The Rowman & Littlefield Handbook of Bioethics 9781538162378, 1538162377

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The Rowman & Littlefield Handbook of Bioethics

The Rowman & Littlefield Handbook Series This contemporary series of academic handbooks provides authoritative guides to relevant and emerging topics across the humanities and social sciences. To encourage greater dialogue across disciplines, this series engages high-quality, original, and multidisciplinary research on topics, themes, and key debates in academia today. • Each handbook draws together newly commissioned work to provide a comprehensive benchmark for a field or subdiscipline • Individual handbooks include an international team of contributors with valuable expertise, knowledge, and perspective in their fields • Handbooks correspond to the latest topics on courses around the world Each handbook is available for purchase in both print and digital formats. For more information, see www.rowman.com. The Rowman & Littlefield Handbook on Aging and Work Edited by Elizabeth Fideler The Rowman & Littlefield Handbook of Contemporary Christianity in the United States Edited by Mark A. Lamport The Rowman & Littlefield Handbook of Philosophy and Religion Edited by Mark A. Lamport The Rowman & Littlefield Handbook of Peace and Conflict Studies: Perspectives from the Global South(s) Edited by Solveig Richter and Siddharth Tripathi The Rowman & Littlefield Handbook of Bioethics Edited by Ezio Di Nucci, Ji-Young Lee, and Isaac A. Wagner

The Rowman & Littlefield Handbook of Bioethics Edited by

EZ IO DI NU CC I, J I - YOU N G LE E , and IS AAC A. WAG N E R

ROWMAN & LITTLEFIELD Lanham • Boulder • New York • London

Published by Rowman & Littlefield An imprint of The Rowman & Littlefield Publishing Group, Inc. 4501 Forbes Boulevard, Suite 200, Lanham, Maryland 20706 www.rowman.com 86-90 Paul Street, London EC2A 4NE, United Kingdom Copyright © 2023 by The Rowman & Littlefield Publishing Group, Inc. All rights reserved. No part of this book may be reproduced in any form or by any electronic or mechanical means, including information storage and retrieval systems, without written permission from the publisher, except by a reviewer who may quote passages in a review. British Library Cataloguing in Publication Information Available Library of Congress Cataloging-in-Publication Data Names: Di Nucci, Ezio, editor. | Lee, Ji-Young (Researcher in Bioethics), editor. | Wagner, Isaac A., editor. Title: The Rowman & Littlefield handbook of bioethics / edited by Ezio Di Nucci, Ji-Young Lee, and Isaac A. Wagner. Description: Lanham : Rowman & Littlefield, [2022] | Series: The Rowman & Littlefield Handbook Series | Includes index. Identifiers: LCCN 2022020059 (print) | LCCN 2022020060 (ebook) | ISBN 9781538162361 (cloth) | ISBN 9781538162378 (ebook) Classification: LCC QH332 .R677 2022 (print) | LCC QH332 (ebook) | DDC 174.2—dc23/eng/20220428 LC record available at https://lccn.loc.gov/2022020059 LC ebook record available at https://lccn.loc.gov/2022020060 The paper used in this publication meets the minimum requirements of American National Standard for Information Sciences—Permanence of Paper for Printed Library Materials, ANSI/NISO Z39.48-1992.

Contents Introduction: Bioethics for the Twenty-Second Century— Isaac A. Wagner, Ji-Young Lee, and Ezio Di Nucci

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PAR T 1—CONCE P TS A ND P R I NCI P L E S SEC TI ON I  • FO U NDAT I O NS A ND M E T H O DS I N B I O E T H I CS  1 Moral Status—Ezio Di Nucci

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 2 Health, Disease, and Well-Being—Søren Harnow Klausen, Regina Christiansen, and Søren Engelsen

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 3 Bioethical Principles—Nana Cecilie Halmsted Kongsholm

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 4 Neurodiversity—Kenneth Shields

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SEC TI ON I I  •  D E CI SI O N- MA K I NG I N H E A LT H C A R E  5 Substituted Decision-Making—Anna-Karin Margareta Andersson

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 6 Autonomy and Responsibility—Lisa Dive

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 7 Paternalism—Jason Hanna

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 8 Conscientious Objection in Health Care—Udo Schuklenk

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SEC TI ON I I I  •  D I SCR I MI NAT I O N I N B I O E T H I C S  9 Epistemic Injustice in Health Care—Ji-Young Lee

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10 Bias in Medicine—Mayli Mertens

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11 Race and Gender in Research—Christopher ChoGlueck and Elisabeth A. Lloyd

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SEC TI ON I V  •  T H E P O L I T I CS O F H E A LT H C A R E 12 Priority Setting in Health Care—Eric Roark

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13 Health Care Rights—Richard Lauer

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14 Vulnerability—Costanza Porro

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15 Nudging in Public Health—Paul Hamilton

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PAR T 2—APP L I C AT I O NS A ND T RE N DS SEC TI ON V  •  ME D I C A L C A SE ST U DI E S 16 Organ Markets—Andreas Albertsen

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17 Physician-Assisted Death—Iain Brassington

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18 Interpretation and Medical Technologies—Jan Kyrre Berg Olsen Friis

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19 Disability—Melinda C. Hall

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SEC TI ON VI  •  E P I D E MI CS A ND PA N DE M I C S 20 Responsible Pain Medicine—Travis N. Rieder, Divya Manoharan, and Vivian V. Altiery De Jesus

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21 Pandemic Ethics—Anne Lykkeskov

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22 Vaccination Ethics—Stephen John

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SEC TI ON VI I  •  R E P R O D U C T I O N 23 The Ethics of Parenthood—Teresa Baron

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24 Reproductive Technologies for Queer and Trans People—Doris Leibetseder

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25 Population Governance—Karin Kuhlemann

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26 The Ethics of Circumcision—Brian D. Earp

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SEC TI ON VI I I  •  B I OT E CH NO LO G Y A N D S O C I E T Y 27 Data Ethics and the Testbed Nation—Aaro Tupasela

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28 AI in Medical Practice—Karin Jongsma and Martin Sand

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29 Performance-Enhancing Drugs—Thomas Søbirk Petersen

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30 Medicine on Russian-Language Social Media—Yulia Karpova and Pavel Vasilyev

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SEC TI ON I X  •  B E YO ND B I O E T H I C S? 31 Neuroethics—Mary Jean Walker

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32 Nursing Ethics—Ann Gallagher

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33 Climate Change—Trevor Hedberg

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34 The Ethics of Animal Experimentation—Adam Shriver

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Index List of Contributors

403 417

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  C ontents

Introduction Bioethics for the Twenty-Second Century Isaac A. Wagner, Ji-Young Lee, and Ezio Di Nucci

What is bioethics? That is a boring question. What should bioethics aim to be? And should it exist at all, an as independent academic discipline? Those are more interesting and exciting questions that an introduction to a bioethics handbook should address. This introductory chapter will thus discuss not merely what bioethics is but also what bioethics ought to be, making the case for the continuing existence of bioethics as a self-contained discipline. Let us begin with names. You might have heard of “bioethics,” but you might have also heard of “biomedical ethics”—for example, a famous textbook uses that denomination, the Principles of Biomedical Ethics: The Principles of Biomedical Ethics by Beauchamp and Childress is a classic in the field of medical ethics. The first edition was published in 1979 and “unleashed” the four principles of respect for autonomy, non-maleficence, beneficence, and justice on the newly emerging field.1 This could strike one as confusing: the Principles of Biomedical Ethics is supposed to be a classic in the

field of medical ethics, yet the principles are quoted in a handbook of bioethics. A suspicious reader might fear that there is something wrong with a field that cannot even agree on its name. It gets worse: there is also clinical ethics, nursing ethics (in fact, one of the most widely read journals in the field carries that particular name), ethics in health care,2 without forgetting public health ethics, which has been all over the news in recent years because of the Covid-19 pandemic. Finally, philosophy of medicine isn’t far off either. However, this proliferation of names need not necessarily signify confusion or disagreement; it could just as well be that there are genuine differences between these denominations, and that is exactly where we are going to start from in this introductory chapter. But before we attempt to defend bioethics as a worthwhile disciplinary category, it is worth taking a step back to ask what the “ethics” component within bioethics means, as the incomplete list of denominations we provided earlier in this chapter could be prolonged with concepts such as applied ethics or practical ethics, which have sometimes been used interchangeably with bioethics, like in Peter Singer’s classic own textbook Practical Ethics.3

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E THICS BE FO R E B I O ET HI C S Outside of philosophy, you could be sometimes forgiven for thinking that ethics is one of two things which it most certainly is not—shouldn’t become, anyway: 1. a branch of the law; or 2. paperwork. In the public sphere—and especially within political circles—ethics basically only comes up when some prominent figure is suspected of a violation bad enough to make the papers but not quite serious enough to land them in court; an ethics committee gets involved, and in the worst-case scenario, the politico in question resigns and comes back two years later or—if they are really unlucky—ends up in the private sector making ten times the dough. To think of ethics as the legal system’s junior leagues couldn’t be further from the truth, for the following reason: ethics provides the normative foundation for our jurisprudence. The other misunderstanding is even worse, because at least the “junior leagues” mistake gets one thing right: sometimes there are good normative or epistemological reasons why an action should be only unethical and not also illegal. But ethics as paperwork—as it is often thought of in the two realms most relevant for bioethics: health care and scientific research—is just sad. Here, ethics is taken to be the process of filling out forms to ensure one has complied with accepted ethical standards. This view embodies a misunderstanding because ethics, properly understood, is critically normative. That is, ethics focuses first and foremost not on the issues of compliance with accepted ethical norms, but on whether those ethical norms ought to be accepted in the first place. Having warned the uninitiated reader against these two common mistakes, what is the difference between ethics and bioethics? And what, further, is the difference—if at all—between bioethics and all these other denominations (biomedical ethics, medical ethics, applied ethics, ethics in health care, etc.)? We will now turn to addressing these questions, 2 

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in a way that attempts to motivate bioethics as a self-standing discipline.

B I O E T H I C S, A LO N E To begin, one view regards bioethics as simply another name for medical ethics. This view finds support from the fact that many of the uncontroversially central topics of bioethics are medical in nature—for example, the ethics of informed consent, of medical research, euthanasia, and so on—as well as that some bioethics textbooks and anthologies deal exclusively with topics in medicine and health care.4 If bioethics were nothing more than this, it obviously could not be defended as a self-contained discipline: it would cover nothing not already covered elsewhere, and would do so rather awkwardly—it would be much clearer to group the relevant medical issues under the heading of medical ethics than of bioethics. We think, however, that assimilating bioethics to medical ethics is a mistake. While bioethics has its roots in medical ethics and bears many marks of its progenitor, it ought to be, and has been, pushed beyond the sphere of the medical. This is partly because many of its main methods find useful application outside the realm of medicine, for example, to animal ethics or environmental ethics. For instance, recall the “four principles” approach to theorizing mentioned earlier, and consider two facts about it. First, these four principles played a central role in the genesis of medical ethics (e.g., see our quote earlier in this chapter about these principles), and second, they are now commonly called the principles of bioethics.5 This switch in categorization from “medical” to “bio” plausibly reflects a recognition that these principles, which began life within medical ethics, can fruitfully be applied beyond the medical, resulting in that method now rightly being associated with a broader field—bioethics. Or consider the method of moral theorizing called ‘reflective equilibrium.’ This method involves playing off intuitions about cases against moral principles, making adjustments to either—rejecting an

  I saac A . W a g ne r , J i - Y o u n g L ee , and E z io D i N u cci

intuition, modifying a principle—to achieve coherence between them. The method was popularized by John Rawls within political philosophy and was first used outside political philosophy by Norman Daniels, who applied it to health care ethics.6 Now, however, it is viewed as a central method, not (only) of health care ethics, but (also) of bioethics.7 Once again, a method initially applied within the medical realm was recognized to have wider application, and is now closely associated with the broader field of bioethics. If bioethics should be broader than medical ethics, how broad should it be? We can ask two questions here. First, why bioethics at all? Why not just ethics? After all, both methods of bioethics just discussed—the four principles approach and reflective equilibrium—have been or could be applied within ethical theory. The reason to hold on to the ‘bio’ in this case concerns not method but subject matter. Bioethics is issue-focused.8 Unlike ethical theory, it is not concerned with theory for its own sake, but rather with concrete ethical issues, ranging from assisted suicide to medical AI. This raises a second question: if bioethics is issue-focused, then what distinguishes it from practical ethics, which is also issue-focused? The answer is that bioethics to some extent is, and (we will argue) ought to be, interdisciplinary, rather than as (a subfield of) philosophy. Its main contributors include not only philosophers but also lawyers, theologians, and practitioners. In contrast, practical ethics is a branch of (applied) philosophy and thus is practiced almost exclusively by philosophers. Why should bioethics be interdisciplinary? First, diversity is epistemically powerful. There is substantial evidence that diverse groups—groups composed of people with different perspectives and ways of thinking—outperform less diverse groups on a wide variety of problem-solving tasks, ranging from the practical to the academic and theoretical.9 Second, diversity has moral benefits in this case. It is morally desirable and perhaps morally imperative that those closely affected by the issues of interest to bioethics be included in the bioethical debates about those issues. This is because bioethical debate about an issue might influence the formation of public policy

on that issue. For instance, debate about euthanasia might result in its legalization. In that way, bioethical debate ends up affecting the practice and experiences of those close to the issue (lawyers, physicians, etc.), and morality arguably requires that people significantly affected by a process have the opportunity to provide input to that process, if feasible. Such debate should, in other words, aspire to be democratic. In sum, we think there is a good case for carving up the disciplinary landscape as follows. Bioethics is a subfield of ethics, with a focus on practical ethical issues. It is distinguished from another subfield of ethics—practical ethics—by virtue of its interdisciplinary nature. Medical ethics, which is also focused on practical ethical issues—within medicine—and is also highly interdisciplinary, is naturally viewed as a subfield of bioethics. Likewise for clinical ethics, nursing ethics, and public health ethics, all of which are issue-focused and interdisciplinary. Finally, bioethics is distinguished from philosophy of medicine by its focus on ethics, as philosophy of medicine is essentially a branch of philosophy of science, not of ethics.10

N OT E S 1. Søren Holm, “Principles of Biomedical Ethics, 5th edn.” Journal of Medical Ethics 28 (2002: 332). 2.  Ezio Di Nucci, Ethics in Health Care (Rowman & Littlefield, 2018). 3.  Peter Singer, Practical Ethics (Cambridge University Press, 1979). 4. For example, Lewis Vaughn, Bioethics: Principles, Issues, and Cases, 4th ed. (Oxford University Press, 2020). 5. James F. Childress, “Methods in Bioethics,” in The Oxford Handbook of Bioethics, ed. Bonnie Steinbock (New York: Oxford University Press Inc., 2009). 6. Norman Daniels, Just Health Care (Cambridge University Press, 1985). 7.  John D. Arras, Methods in Bioethics: The Way We Reason Now (Oxford University Press, 2017). 8.  John McMillan, The Methods of Bioethics: An Essay in Meta-bioethics (Oxford University Press, 2018). 9.  Scott E. Page, The Diversity Bonus (Princeton University Press, 2017). 10.  We would like to thank our assistant editors, Andrea Bidoli and Rikke Friis Bentzon, for their invaluable work on the manuscript. I nt r od u ction 

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PA R T I

CONCEPTS AND PRINCIPLES

SEC TION I

FOUNDATIONS & METHODS IN BIOETHICS

CHAPTER 1

Moral Status Ezio Di Nucci

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hat does the “bio” stand for, in bioethics? You’d think such a fundamental question would have been settled with the establishment of the field—isn’t that what names are for?—but actually, in good old philosophical tradition, that is still one of the most debated questions within bioethics, for the simple reason that the answer would settle the hard question of who—which beings or things—is deserving of moral consideration; and therefore also who isn’t, which is possibly even more controversial. This means, ironically, that the field is still trying to find out what its own name means (or at least what it refers to, which isn’t necessarily the same, if you remember your Frege). Then again, if you are a philosopher, you are used to these wild levels of uncertainty, so no big deal. Wait, you didn’t study ancient Greek in school, you say? Lucky bastard but ok, then I should probably also mention that “bio” is ancient Greek for life, but that doesn’t really help because the real question is not the biological question of what counts as a living being (at least that one question we are happy to leave to the natural sciences) but the normative question of what is worthy of moral consideration. This issue cannot be settled by just assuming that anything that counts as a living being is worthy of moral consideration for the simple reason that, first, we would have reduced ethics to biology—which 8

makes no sense, pace some neo-Aristotelians1—but, second and even more worryingly, we would still need to find out why counting as a living being makes you worthy of moral consideration, which is basically the original question again: so no progress by appealing to biology; can’t escape philosophy I’m afraid, so here we go.

M O R A L CO N S I DE R AT I O N: WH O A N D WHY What things or beings are deserving of moral consideration and why? This is the question that the present chapter will address and try to answer, thereby also—hopefully—helping us make progress on what “bioethics” means, if not what it is (if you haven’t skipped our introduction, you should already know that much; you have? Go back, but do come back afterwards, please). A couple of methodological remarks to try to limit the scope—already very broad—early on: I am sure that when most philosophers (in fact, for a change we could even dare to say most people) think of bioethics, they think of abortion, euthanasia, and other similar classics. But how does that square with the bio-element? Shouldn’t the term’s etymology point beyond human life? What this suggests is that, even though most people associate bioethics with questions about

human life, the field is not necessarily restricted to that—not etymologically anyway, but there are many other more pressing constraints, clearly. This is both helpful and unhelpful: helpful, because we have found out something meaningful about the possible scope of bioethics; unhelpful, because what we have found out doesn’t limit the scope, but rather it widens it beyond humanity. And since the question here is which things deserve “moral status,” it would have been more straightforward if we could have focused already early on just on human life, but we can’t. This means more work for us, but also—hopefully—a more inclusive conception of bioethics and moral status; which is a good thing, right? A second methodological remark is structurally similar: why insist on the disjunctive “things or beings”? After all, “bio” might not necessarily limit our scope to human life, but can’t it at least limit our scope to “beings” rather than “things”? If things have moral status, then why is it bioethics at all? Here the answer is two-fold, but it isn’t too complex: on the one hand, the disjunctive ‘things or beings’ is again meant to clarify that we, as philosophers, are not willing to completely leave the settling of the question “what is a living thing?” to the empirical sciences. That is, the issue of moral status is a normative issue, and it would be a mistake to just assume that whatever the empirical sciences happen to count as ‘beings’ are just those things that are deserving of moral consideration. Second, technological progress might one day lead to things that are not yet beings but still might deserve some form of moral consideration. This is not a question that I will spend too much time on—basically because it is too early in the new millennium and we know too little; but for those very reasons, it would be foolish to rule out something of this magnitude by definition. We have, then, made little progress, and what progress we have made has only upped the stakes. The task is hard, but simple: we need to identify the plausible candidates for moral status and to distinguish them from the implausible candidates; and in the process, we need to also come up with plausible normative criteria for such a distinction. That’s it: no

more, but no less either. One element which is not part of our main task but is still worth discussing is the only other bit of our equation, namely “moral status” itself. What is that? That’s another easy one: having “moral status” just means that its subject is deserving of moral consideration and that what happens to a subject to which we assign moral status is morally relevant. You might think that’s an empty box and all the hard work still needs doing; and you would be right, as “moral status” itself doesn’t settle any of the difficult questions, either about who is deserving of it or about its distribution, for example, whether all beings that have moral status deserve equal consideration. Remember: we are philosophers; the only thing we know is that we don’t know anything. Some big issues I will leave aside: the climate, for example. Is our planet—or, for that matter, any other planet—deserving of moral consideration? Here you will surely think of the so-called Gaia-hypothesis,2 but we have already established that this particular hypothesis (understood as the claim that the planet is itself a biological organism in some relevant sense) doesn’t actually matter. As we are not necessarily limiting the scope of “moral status” to living things, it is neither here nor there whether planet Earth is, in any defensible sense, alive. More interesting would be the question of whether our planet is intrinsically valuable—as in, valuable independently of its value to us or something else. But that question is neither clear nor relevant here—and elsewhere in this handbook we discuss the crucial role that the climate will have to play within bioethics in the years to come, so we’ve got that covered and can talk about other things here, with one caveat: while at the level of generality of “the climate” or “planet Earth” we might be indeed going beyond the scope of bioethics, the same cannot be said of the oak tree at the bottom of my garden. Then there are, inevitably, non-human animals. It is starting to become increasingly clear that we mustn’t confuse the question of “moral status”3 with the independent question of what is—and isn’t—a bioethical question. It would, for example, be methodologically legitimate to simply rule that non-human M o r al S tat u s 

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animals belong in a different field—animal ethics?— and that therefore we are allowed to ignore them within a bioethics handbook. Indeed, you won’t find a chapter about animal ethics in this handbook: what you will find, on the other hand, is a chapter on animal experimentation. And the inclusion of “animal experimentation” together with the exclusion of “animal ethics” proper is relevant here, because it emphasizes how the moral status of animals might be relevant to other questions within the biomedical ethics field broadly construed, such as, for example, “research ethics.” This further reinforces the point we are making in this chapter, namely that the question of moral status is crucial. Still, this move does not settle the question of “moral status,” so that in a chapter on this particular issue, whether non-human animals deserve moral consideration, and if so to what extent—and if not, why not—cannot be side-stepped.4 Implicitly, we already have the beginning of a taxonomy; here are the items that we have already at least mentioned so far: 1. planets; 2. trees; 3. non-human animals; and last but hopefully not least, 4. human beings. Is this at all helpful, I ask you? We haven’t even asked any of the hard questions yet, let alone answered them. But even this simple taxonomy already allows us to make some progress, for example, in terms of the derivatives of the items in the previous list—think especially of corpses and carcasses. While respecting a dead tree borders on the spiritual, most cultures have very strict limits on what can be done with human corpses, just think of the ongoing ethical debate on organ donation.5 Clearly here it is important to distinguish between living donors and dead donors, but there is no need to get into any details, the point is simply that the very existence of the debate points to the fact that many people take seriously the hypothesis that human corpses are deserving of moral consideration—even 10 

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if just in a derivative sense (as in, because human beings are deserving of moral consideration when they express future wishes about what will happen to their corpses). While it is ridiculous to mention dead trees magic in the same sentence as the dead organ donor debate, many people will be familiar with the unease of driving over an animal carcass on the motorway—so that things are, after all, not that straightforward, and our initial taxonomy already needs updating with the dark side of life, death. 1. planets 2. (dead) planets 3. trees 4. (dead) trees 5. non-human animals 6. (dead) animals 7. human beings 8. (dead) “people” You might laugh at how particular philosophers can be—and I might join you. Interlude: the main national newspaper in the country where this chapter is being written does not, normally, waste much of its column and debate pages on ethics, but recently, there was an ethics column by two bioethicists. That— probably much more than an academic handbook—is what shapes what the cultural elites think of a particular field. And do you want to guess what the column was about? No, I don’t think you can guess—despite the previously shown list of enhanced taxonomy; I will have to tell you: it was about the very pressing question of whether people could be buried together with their dead pets. You can stop laughing now. After all, the most prominent national newspaper in the United States of America has its own regular ethics column whose most recent titles were, at the time of writing: “What do I owe my difficult mother-inlaw?” and “Should I tell a Facebook friend that I had an affair with her partner?,” from which you should conclude that ethics is doomed. End of interlude. We can disregard most of our revised taxonomy, including non-human animal corpses. But the question of the dead (humans) is too exciting to be put

aside so quickly, because what these things clearly aren’t (anymore) are living organisms. Why does this matter to our question of moral status? Because we might have found our first non-living thing deserving of moral consideration. And this question is not so easily solved by pointing out that the consideration is to the living being that this corpse once was, for the following two reasons: 1. First, assuming that a living person has the authority to decide what happens to their corpse is question-begging, since the issue is exactly the link between the living person at t1 and “their” corpse at t2; 2. Even if we find a convincing solution to this problem, it is not clear that the issue is settled. Just think of a case in which someone disowns their future corpse and explicitly authorizes us to “play football with my head”; that doesn’t intuitively solve our moral puzzlement at the prospect of playing football with our dead friend’s head—and this cannot necessarily be reduced to less-than-conscious leftovers of some kind of religiously minded spirituality (even though that might ultimately be one of the most plausible contenders). Before moving on, a couple of further remarks on the issue of the moral status of the dead: firstly, there is the well-known problem of the definition of “brain dead,” which is often used in organ donation; while this is not the place to tackle that complex debate,6 the issue of “brain dead” emphasizes the complexities around questions of moral status between life and death, namely that on top of these problems with the status of the dead, we have additional problems identifying who belongs in the “dead” group. The second issue comes from technological innovation: the moral status of so-called digital remains is also a thing.7 Now, if you are as old as me, you might object that everything is “a thing” online, so it doesn’t count. Not so fast, though: because given the problems established here with the moral status of corpses, we cannot dismiss out of hand the moral status of digital remains either, because it won’t help

to point out that they are not living organisms or that they cannot, themselves, be harmed. If someone hacked your recently deceased Black granny’s social media identity to make racist jokes, you should kill them—which is a mild way of saying that your granny’s digital identity deserves moral consideration, in the way we have previously defined it: what happens to it is not morally irrelevant. Moral status can, then, be derivative: namely things can derive their moral status from other things, like your grandmother’s digital identity deriving moral status from your grandmother’s moral status—same with her non-digital remains, like organs, for example. This seems to be a simple idea, but once derivation has been validated—as in, once we accept the principle that one thing can be worthy of moral consideration in virtue of its connections with another thing—then where are we supposed to stop? Being inclusive might get us into trouble, here— for example, there is a whole literature, in jurisprudence, about how far we ought to go in respecting the wishes of the dead, for example, when they link unreasonable conditions to inheritances. Like: you will get your grandpa’s house, but only if you divorce your wife. What is, then, the alternative to generous inclusiveness? Fences, basically.

R E S T R I C T I N G T H E M O R A L DO MA IN Inevitably, the moral domain will have to be ringfenced: there are good arguments for that, including resource scarcity. The big question when it comes to the debate about moral status isn’t which things are in and which ones are out, nor is it whether we need a fence at all: those are the easy questions—the hard question is, no surprise here, the criteria for inclusion in the moral domain. The old classic, here, is the soul (the white male soul, that is to say) of organized religion. This is a serious point: the soul was and is the fencing; that is, having a soul was seen as necessary/sufficient for being deserving of moral consideration. And while you might think it a bit old-fashioned, organized religions recognized the need for inclusion criteria—and M o r al S tat u s 

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then promised to save your soul for money, but that’s another story. Recognizing the need for inclusion criteria is an important step, because it opens the door for the normative game of giving and recognizing reasons. All we need to do then is replace the soul with something more plausible—as in, not based on faith. An important shift, here, happened in the late eighteenth century with Jeremy Bentham, the English philosopher: The question is not, Can they reason?, nor Can they talk? but, Can they suffer? Why should the law refuse its protection to any sensitive being?8 This is a famous quote, reinvigorated by Peter Singer who made it his starting point in Animal Liberation (mind you, famous in philosophy just means that not only philosophers have heard about it, so given how few philosophers are still out there, that’s one tiny threshold). Bentham is making a classic move, away from the soul–mind–brain cognitive fence and toward the pain–suffering affective one. Additionally, as things stood more than 200 years ago, this was an inclusive move, on the assumption that basically all minded beings could also suffer, but not all sensitive beings were minded: non-human animals being the classic example. Was this true back then and, more importantly, is it (still) true today? The 233 years since Bentham’s Principles is not nearly enough time for beings to change via evolution by natural selection, so the question in the previous quote is again not one of biology but one of philosophy. In fact, that question is many questions, so let us spell it out properly: 1. Is an affective demarcation of the moral domain more plausible than a cognitive one? 2. Is an affective demarcation of the cognitive domain more inclusive than a cognitive one? Especially to answer question #2—but also relevant for #1—the following further questions are to be addressed: 12 

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1. Which sensitive beings not “minded”? 2. Which “minded” beings are not sensitive? It is clear that Bentham’s claim makes sense only in the context of assuming that it is not the case that all and only minded beings are sensitive, otherwise the claim would be meaningless. The second question implicit here is whether social and technological change over the last couple of centuries has made any difference to our answers to those questions—which, it turns out, is going to be a big part of what we today understand as the discipline of “bioethics.” Before that, though, we must take a step back and reflect on how modern Bentham’s position is and was, 233 years ago as much as today—for the simple reason that it was not appealing to what Peter Singer would later call—again in Animal Liberation9—a speciest set of criteria. Criteria for inclusion in the domain of moral consideration were not, namely, purely based on the membership of Homo sapiens, humanity (the soul), or—but that’s already a more difficult claim—autonomous agency. The philosophically important point to emphasize here is the idea that criteria were not given—like membership of a particular species, Homo sapiens— but normative, like the difference between being minded and being sensitive. One can disagree on the latter alternative between minded and sensitive, but already moving from the former kind of criterion to the latter is entering the normative game, instead of outsourcing reasons to nature.

M O R A L S TAT U S, FI N A L LY We have so far identified three options for moral status: 1. species membership; 2. cognitive capacities; and 3. affective capacities. Now the question, for bioethics, is what these alternatives mean in practice—and then we will be done already, many thanks for your patience so far.

We will now see that, 233 years after Bentham, bioethics is mostly still stuck debating the possible gaps between option #1 and option #2; and this is not for the simple reason that bioethics doesn’t include animal ethics—as we have already discussed—but, basically, because we aren’t very modern and—which should never be underestimated—the social institution that has over the years shown the most interest in bioethics has always been and still is organized religion, Christianity in particular, and the Catholic Church to be more precise. That is the one thing that bioethicists can boast to philosophers about: someone actually cares, even though that someone is, mostly, old white men on the wrong side of the Tiber. But let us not digress: you will now see that, in fact, sometimes defenders of option #1—species membership—appeal to option #3—affective capacities—in order to come back at supporters of option #2, cognitive capacities. Enter the abortion debate: in fact, nothing much has happened in the abortion debate since, at least, the 1970s;10 but if one thing has happened, it has been fetal pain.11 Here I don’t want to get into this debate but just point to its methodological significance, in the following respect: if fetal pain is taken to be a reason that speaks against abortion, then we have supporters of option #1—the fetus must be protected because it is a member of a group intrinsically worth protecting, humanity—and supporters of option #3—pain and suffering are the relevant criteria for moral status— converging against option #2, where the autonomy of the pregnant woman normally takes precedence. The debate is clearly more complex than my sketch here, but I won’t go into it here, as abortion was just meant to serve as an illustration of the three main positions when it comes to moral status in bioethics (in fact, the careful reader might notice that this handbook does not contain a chapter on abortion, which is almost heresy in bioethics, what is bioethics without the abortion debate? Well, read the whole bloody thing, and you will see that bioethics is alive and well and doesn’t need the abortion debate).12 In our trichotomy, a fetus can be classified as follows: human, check; minded, no; sensitive, maybe. If we go back from fetus to embryo, we probably have:

human, still check; minded, still no, even more so; sensitive, no. So biology does matter, it just isn’t the whole answer to most bioethical questions. Hopefully, this has helped understand our trichotomy of moral status in bioethics, but just in case, here are some more examples. Newborn human baby, human, check (it’s in the name, stupid); minded, probably not, but that’s already more difficult; sensitive, yes, right? And so it goes, you can play this game yourself, with non-human animals, severely disabled humans, terminally ill patients, old people affected by serious neurogenerative diseases such as Alzheimer’s. In fact, what this game contributes to the debate about moral status in bioethics is also the following: one theoretical possibility that we have not considered so far is a form of pluralism in which two or more of the criteria can come together to make a stronger case for the moral consideration of a particular being, like human, minded, and sensitive—then definitely worthy of moral consideration, and maybe in fact a being that checked all three would be worthy of more moral consideration than one that checked only one or two. This is the other important question, which we haven’t touched upon yet: the issue of equality within the moral domain. One thing is to decide who is in and out of the moral domain and what are the relevant moral criteria for inclusion and, thereby, exclusion from moral consideration. That is difficult enough but, possibly, the following is even harder: should those included in the moral domain deserve equal consideration? The question of moral status, you might think, does not settle that, because it only settles in or out. That is, I believe, too quickly: there is an important sense in which the question of moral status—in and beyond bioethics—does settle the question of equal consideration. If the only relevant moral criterion is moral status, then all those included in the moral domain deserve equal consideration. This is, in fact, a necessary consequence of there being a single criterion for moral status. In this particular respect, then, being a pluralist about moral status might make one’s view more nuanced and plausible but might generate problems when it comes to inequality. M o r al S tat u s 

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Summing up, this chapter has offered an overview of the question of moral status in bioethics, explaining the nature of the question of moral status, its importance, and the main alternatives in the literature that try to answer the question. You might find that no practical question has been answered in this chapter, and you might be right: that’s what the rest of the handbook is for.

NOTES 1.  See, for example, R. T. McClelland, “A Plea for Indifference,” The Journal of Mind and Behavior 41 (2020): 211–46. 2.  J. E. Lovelock and L. Margulis, “Atmospheric Homeostasis by and for the Biosphere: The Gaia Hypothesis,” Tellus 26, nos. 1–2 (1974): 2–10; see also, J. W. Kirchner, “The Gaia Hypothesis: Can It Be Tested?,” Reviews of Geophysics 27, no. 2 (1989): 223–35; J. W. Kirchner, “The Gaia Hypothesis: Fact, Theory, and Wishful Thinking,” Climatic Change 52, no. 4 (2002): 391–408; A. Free, and N. H. Barton, “Do Evolution and Ecology Need the Gaia Hypothesis?,” Trends in Ecology & Evolution 22, no. 11 (2007): 611–19; D. E. Moody, “Seven Misconceptions Regarding the Gaia Hypothesis,” Climatic Change 113, no. 2 (2012): 277–84. 3.  M. A. Warren, Moral Status: Obligations to Persons and Other Living Things (Clarendon Press, 1997); L. Gruen, “The Moral Status of Animals,” Stanford Encyclopedia of Philosophy (2003); D. DeGrazia, Taking Animals Seriously: Mental Life and Moral Status (Cambridge University Press, 1996); D. DeGrazia, “Moral Status as a Matter of Degree?” The Southern Journal of Philosophy 46, no. 2 (2008): 181–98; P. Singer, “Speciesism and Moral Status,” Metaphilosophy 40, nos. 3–4 (2009): 567–81; A. Buchanan, “Moral Status and Human Enhancement,” Philosophy & Public Affairs 37, no. 4 (2009): 346–81; S. M. Liao, “The Basis of Human Moral Status,” Journal of Moral Philosophy 7, no. 2 (2010): 159–79; M. Coeckelbergh, Growing Moral Relations: Critique of Moral Status Ascription (Palgrave Macmillan, 2012); Agnieszka Jaworska and Julie Tannenbaum, “The Grounds of Moral Status,” Stanford Encyclopedia of Philosophy (2021). 4.  P. Singer, “Animal Liberation,” in Animal Rights (London: Palgrave Macmillan, 1973), 7–18; P. Singer, “Animal Liberation or Animal Rights?,” The Monist 70, no. 1 (1987): 3–14; T. Regan and P. Singer, Animal Rights and Human Obligations (1989); D. Jamieson, “Animal Liberation Is an Environmental Ethic,” Environmental Values (1998): 41–57; D. Fraser, “Animal Ethics and Animal Welfare Science: Bridging the Two Cultures,” Applied Animal Behaviour Science 65, no. 3 (1999): 171–89; T. Regan, Defending Animal Rights

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(University of Illinois Press, 1999); Regan, T. (2004); The Case for Animal Rights (University of California Press, 2001); R. Garner, Animal Ethics (Polity, 2005); B. E. Rollin, “The Regulation of Animal Research and the Emergence of Animal Ethics: A Conceptual History,” Theoretical Medicine and Bioethics 27, no. 4 (2006): 285–304; C. Palmer, Animal Ethics in Context (Columbia University Press, 2010); T. L. Beauchamp and R. G. Frey, eds., The Oxford Handbook of Animal Ethics (Oxford University Press, 2011); S. J. Armstrong, and R. Botzler, eds., The Animal Ethics Reader (Taylor & Francis, 2016); P. Sandøe, S. Corr, and C. Palmer, Companion Animal Ethics (John Wiley & Sons). 5.  G. R. Dunstan, “The Ethics of Organ Donation,” British Medical Bulletin 53, no. 4 (1997): 921–39; J. S. Cameron and R. Hoffenberg, “The Ethics of Organ Transplantation Reconsidered: Paid Organ Donation and the Use of Executed Prisoners as Donors,” Kidney International 55, no. 2: 724–32; K. D. Phadke and U. Anandh, “Ethics of Paid Organ Donation,” Pediatric Nephrology 17, no. 5 (2002): 309–11; R. D. Truog, “The Ethics of Organ Donation by Living Donors,” The New England Journal of Medicine 353, no. 5 (2005): 444; S. D. Shemie, “Clarifying the Paradigm for the Ethics of Donation and Transplantation: Was ‘Dead’ Really So Clear before Organ Donation?,” Philosophy, Ethics, and Humanities in Medicine 2, no. 1 (2007): 1–5; J. L. Verheijde, M. Y. Rady, and J. McGregor, “Recovery of Transplantable Organs after Cardiac or Circulatory Death: Transforming the Paradigm for the Ethics of Organ Donation,” Philosophy, Ethics, and Humanities in Medicine 2, no. 1 (2007): 1–9; M. Wang and X. Wang, “Organ Donation by Capital Prisoners in China: Reflections in Confucian Ethics,” Journal of Medicine and Philosophy 35, no. 2 (2010): 197–212; T. S. Petersen and K. Lippert-Rasmussen, “Ethics, Organ Donation and Tax: A Proposal,” Journal of Medical Ethics 38, no. 8 (2012): 451–57; J. Coggon, “Elective Ventilation for Organ Donation: Law, Policy and Public Ethics,” Journal of Medical Ethics 39, no. 3 (2013): 130–34. 6. J. Hardwig, “Treating the Brain Dead for the Benefit of the Family,” Journal of Clinical Ethics 2, no. 1: 53–56; J. Spike and J. Greenlaw, “Ethics Consultation: Persistent Brain Death and Religion: Must a Person Believe in Death to Die?,” The Journal of Law, Medicine & Ethics 23, no. 3 (1995): 291–94; B. A. Rix, “Brain Death, Ethics, and Politics in Denmark,” in The Definition of Death: Contemporary Controversies, eds. S. Younger, R. Arnold, and R. Schapiro (Baltimore, MD: The Johns Hopkins University Press, 1999), 227; R. D. Truog and W. M. Robinson, “Role of Brain Death and the Dead-Donor Rule in the Ethics of Organ Transplantation,” Critical Care Medicine 31, no. 9 (2003): 2391–96; R. D. Pentz et al., “Ethics Guidelines for Research with the Recently Dead,” Nature Medicine 11, no. 11 (2005): 1145; L. Whetstine et al., “Pro/con Ethics Debate: When Is Dead Really Dead?,” Critical Care 9, no. 6 (2005): 1–5; L. O. Gostin, “Legal and Ethical

Responsibilities Following Brain Death: The McMath and Muñoz Cases,” JAMA 311, no. 9 (2014): 903–4; D. C. Magnus et al., “Accepting Brain Death,” Replacement Parts: The Ethics of Procuring and Replacing Organs in Humans 49 (2015); A. L. Dalle Ave, D. Gardiner, and D. M. Shaw, “The Ethics of Extracorporeal Membrane Oxygenation in Brain-Dead Potential Organ Donors,” Transplant International 29, no. 5 (2016): 612–18; J. Du Toit, and F. Miller, “The Ethics of Continued Life-Sustaining Treatment for Those Diagnosed as Brain-Dead,” Bioethics 30, no. 3 (2016): 151–58; M. Nair-Collins and F. G. Miller, “Do the ‘Brain Dead’ Merely Appear to Be Alive?,” Journal of Medical Ethics 43, no. 11 (2017): 747–53; D. Lamb, Death, Brain Death and Ethics (Routledge, 2020). 7. See, for example, P. Stokes, “Deletion as Second Death: The Moral Status of Digital Remains,” Ethics and Information Technology 17, no. 4 (2015): 237–48. 8.  Jeremy Bentham, An Introduction to the Principles of Morals and Legislation (1789). 9.  Peter Singer, Animal Liberation (HarperCollins, 1975). 10.  J. J. Thomson, “A Defense of Abortion,” Philosophy & Public Affairs 1, no. 1 (1971): 47–66.

11.  S. J. Lee et al., “Fetal Pain: A Systematic Multidisciplinary Review of the Evidence,” JAMA 294, no. 8 (2005): 947–54; D. J. Mellor et al., “The Importance of “Awareness” for Understanding Fetal Pain,” Brain Research Reviews 49, no. 3 (2005): 455–71; E. C. Brugger, “The Problem of Fetal Pain and Abortion: Toward an Ethical Consensus for Appropriate Behavior,”Kennedy Institute of Ethics Journal 22, no. 3 (2012): 263–87; S. W. Derbyshire and J. C. Bockmann, “Reconsidering Fetal Pain,” Journal of Medical Ethics 46, no. 1 (2020): 3–6. 12.  You can find my own take on it in E. Di Nucci, “Abortion: Strong’s Counterexamples Fail,” Journal of Medical Ethics 35, no. 5 (2009): 304–5; E. Di Nucci, “On How to Interpret the Role of the Future within the Abortion Debate,” Journal of Medical Ethics 35, no. 10 (2009): 651–52; E. Di Nucci, “Embryo Loss and Double Effect,” Journal of Medical Ethics 39, no. 8 (2013): 537–40; E. Di Nucci, “Killing Fetuses and Killing Newborns,” Journal of Medical Ethics 39, no. 5 (2013): e19–e20; E. Di Nucci, Ethics without Intention (London: Bloomsbury, 2014); E. Di Nucci, “Fathers and Abortion,” Journal of Medicine and Philosophy 39, no. 4 (2014): 444–58.

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CHAPTER 2

Health, Disease, and Well-Being Søren Harnow Klausen, Regina Christiansen, and Søren Engelsen

B

eing healthy or ill, and doing well or not doing well, are basic states of humans—and other sentient beings— that have large and obvious normative significance and are therefore centrally important to bioethics. Maintaining and promoting health and avoiding, curing, or mitigating disease and illness are predominant goals of medicine and health care. They are undoubtedly of broad, perhaps almost universal instrumental value, as disease and illness tend to limit an individual’s opportunities in life as well as reduce his or her happiness, in almost all circumstances.1 Health is even widely, albeit more controversially, held to have intrinsic value.2 If there is a still more fundamental goal of health care, then it is arguably to maintain or improve well-being, which is also recognized as a basic value by virtually all views in normative ethics3 and as a basic concern by the most influential conceptions of bioethics.4 Because the notions of health, disease, illness, and well-being are so central but also quite controversial—being associated, rightly or wrongly, with different, more or less humane or practical approaches to health care and conflicting views about the nature of human beings and the obligations of the health professions—it is important to get clear about the different ways in which they are used. Very much in bioethics depends on how they are understood. In this chapter, we try to map the conceptual terrain while 16

also indicating what we consider to be more and less helpful ways of looking at the matter. The central philosophical issues on which we shall concentrate are: What is the nature of health, disease, and illness? How are they related to well-being? What is the value of health and disease? What rights and duties do they ground? What is the nature of well-being, and what role should it play in bioethics? Well-being is the most fundamental and philosophically controversial notion, but we shall begin with the more specific notions of health, disease, and illness, assuming a rough, implicit understanding of well-being until we try to unpack this notion in the second part of this chapter.

H E A LT H, DI S E A S E, A N D I L L N E S S The most straightforward understanding of health is that it is simply the absence of disease. But apart from shifting the burden to the task of clarifying the latter notion, this may seem to many a too minimal, if not, impoverished notion. It is common to think of health as a more positive, qualitative state, which requires more than being free of disease. This has been done in two ways. The classical notion, which goes back to antiquity, takes health to be a state of balance and proportion among the different parts, processes, and functions of an organism. The “humoral

pathology” of the Hippocratic school of medicine is an example of this view, which is also found in Plato.5 Contemporary versions of this view conceive of health as an equilibrium or homeostasis, a notion pioneered by the nineteenth-century French physiologist Claude Bernard and further developed by the American physiologist Walter Cannon.6 On the homeostasis view, health is the organism’s ability to maintain internal stability while adjusting to changing external conditions. While such “balance” or “stability” views conceive of health as a kind of ideal state, and a positive quality, they are still broadly naturalist. They define health in terms of natural processes and functions of the organism and do not make it dependent on human values, norms, institutions, or practices. More emphatically normative or evaluative approaches define health in terms of quality of life. Such views come in different strengths. Moderate versions take health to be a state that allows an individual to cope with all the demands of daily life.7 More demanding views define health in terms of well-being, that is, of what is ultimately good for a person.8 An extreme and famous, but also much criticized, example of the latter is the official WHO definition of health as “a state of complete physical, mental and social well-being.”9 Apart from making health dependent on the value-laden notion of well-being, such a definition makes health into an almost unattainable ideal and seems to imply that hardly anyone is really healthy. For this reason, it has been criticized for leading to “pathologization” and “medicalization” of otherwise normal conditions.10 But since positive notions of health are not defined in contrast to pathological conditions, this is not necessarily so; not being healthy does not entail that one suffers from a disease or needs medical treatment. Common to the normative views is the implication that health is not merely a state of the organism but constituted relationally. It describes how well the organism responds to, and is accommodated by, its environment. Naturalist views are also weakly relational, as they take health to include an ability to adjust to external changes, but here the reference is to a broad natural environment. By contrast, normative

views make health relative to the specific social and cultural environment, for example, whether a condition is treated favorably or unfavorably, what are the relevant tasks of daily life, or the availability of technological or social support that mitigate the negative consequences of physiological or mental conditions. On such views, people with the same bodily and mental abilities may count as healthy and unhealthy, respectively, if they live in different, more or less fortunate circumstances. The health of a person with paraplegia can be improved by providing her with a wheelchair and erecting ramps and lifts in her environment.11 The notion of disease has been subject to similar disagreements between “naturalist” and “normativist” interpretations. A highly influential naturalist view has been developed by Christopher Boorse.12 His analysis aims at capturing the notions of health and disease as these are standardly used by medical professionals and understood by “traditional physiological medicine.” Boorse conceives of health as normal functioning, that is, a typical (statistically normal) level of functional efficiency. This, in turn, is understood in terms of how well the parts and processes of an organism contribute to its overall goals, ultimately to its reproduction and survival. Diseases are defined as functional impairments and “deviations from the species biological design.”13 While Boorse’s analysis does posit a certain norm and makes health and disease dependent on the ability to attain certain goals, he insists that it is nevertheless robustly naturalist and value-free. This is so because the goals of reproduction and survival are posited by evolutionary biology, an assumedly value-free science, and because functional efficiency is determined by biological science and not dependent on specific judgments or interests of groups or individuals. On this account, the connection between disease and well-being is contingent: while diseases are very often harmful to those who have them, making them suffer or unable to do as they want, they may not always have such consequences. Some people with even severe physical impairments may be able to adapt to their condition so that they experience no reduction in well-being. Some deviations from the H ealth , D isease , and W ell - B ein g  

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species’ biological design may even be beneficial to a person (as some persons suffering from polydactylism, i.e., having one or more extra fingers, have been successful guitarists). A further important feature of Boorse’s analysis is that healthy functioning should be defined relatively to a reference class, for example, an age group; an infant does not suffer from a disease because it cannot walk. Normativists point to the historically changing practices of classifying conditions as diseases (with masturbation, hysteria, and homosexuality having been widely regarded as such) and view this as evidence that diseases are socially constructed, in a way that centrally involves value judgments. Rachel Cooper has argued that the ordinary, and most appropriate, understanding of disease is that (i) disease is a bad thing to have, (ii) the afflicted person is considered unlucky, and (iii) the afflicted person can potentially be medically treated.14 Understood this way, disease is primarily a reduction in well-being. But since well-being could also be understood more or less objectively (see below), this does not in itself suffice to make it a “socially constructed” entity. The addition of (ii), however, further requires that the reduction in well-being should be recognized as such in the person’s community. On the other hand, (iii) is added to avoid that all bad and pitiful conditions (e.g., poverty) should count as diseases. It has been criticized for being ad hoc and making the definition circular, however, since “medical treatment” is standardly defined as activities aimed at preventing or combating disease.15 The term illness is often used synonymously with “disease” but also widely used to signify a different or more special condition. Boorse views illness as something that does involve normative aspects and is partially socially constructed, much like normativists would have it with regard to disease—with the important difference that for him, illness must also involve a disease, and so cannot be completely socially constructed. He takes illness to be a disease that is incapacitating and is undesirable for the bearer, and something that entitles to special treatment and can excuse otherwise problematic behavior.16 Both naturalists and normativists thus tend to focus on 18 

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the social practices of classification (though naturalists give specific weight to the scientific practices and their assumedly objective basis). By doing so, they may seem to ignore an important aspect of illness, namely that it is something one feels; that it typically involves (or simply is) a subjective or experiential state. This has been emphasized by an increasingly popular approach, so-called phenomenology of illness.17 Havi Carel defines illness as “the experience of disease, the ‘what it is like’ qualitative dimension as it is experienced and made meaningful by the ill person.”18 This resembles Boorse’s definition in taking disease, understood as a physiological dysfunction, as a necessary component in illness. Apart from stressing experiential quality rather than social conventions, however, Carel’s view stands out because she claims that “illness is the most important element of the disease-illness coupling.”19 While it is certainly correct that we care about dysfunction primarily “when it causes us pain or discomfort,”20 this view may be too narrow. It can be argued that we need to care about dysfunction also as a potential, long-term threat to well-being (and so even when it does not yet cause any actual discomfort) and give emphasis to prevention and lifestyle changes, apart from empathizing with and alleviating felt pains and worries.21 It is also debatable, as we shall see, whether actual well-being or discomfort consists merely in positive and negative experiences.

CO N C E P T UA L C H O I C E S A N D N O R MAT I V E I M P L I C AT I O N S A central motive behind the comprehensive and more or less normative notions of health, like that of the WHO, is to ensure that resources and health care efforts are directed at more than just removing diseases. There is a persistent worry that health care funding or interventions will remain minimalistic and one-sidedly focused on tangibly pathological conditions; that by defining health merely as the absence of disease or viewing disease as a biological dysfunction, policymakers will be tempted to only care for basic medical treatment and make too little of

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prevention, mental health support, and the thriving, well-being, and flourishing of citizens. Similarly, some see it as a virtue of a naturalist understanding of health that it may curb expectations for what public health care services can provide, avoiding an explosion in costs and demands, and help concentrate efforts and resources on the core aims and needs.22 Both attitudes are understandable, because historically, “genuine” health concerns have generated particularly strong rights and obligations, and they continue to attract particular attention, as compared to other factors that can be detrimental to well-being. This is one of the reasons why many people seem to wish for a diagnosis, either for themselves or their relatives; apart from providing explanations and excuses for otherwise problematic behavior, this is often a prerequisite for receiving public help. But while this overall connection between health (and especially disease) and public concern and help is likely to remain, as a matter of fact, it is neither clear nor necessary, and the problems it gives rise to might not be best tackled by defining health broader or narrower. Pregnancy and childbirth are hardly diseases on any reasonable view, but standardly seen as generating a right to medical treatment. If it turns out that there are greater threats to well-being than certain pathological conditions (e.g., loneliness or a lack of cultural stimulation or aesthetic satisfaction) and that they are perhaps no more difficult to mitigate, it should be possible to justify shifting resources from health care to these other threats, without conceptualizing them as health threats. When, and to what extent, this could actually be justified, depends on which normative theory one adopts. While a utilitarian would immediately welcome such redistribution, deontologists may insist that alleviating severe suffering has absolute priority; but again, it should not be taken for granted that a disease always constitutes a more severe kind of suffering than other impairments of well-being. This points to the central importance of assessing the impact on well-being of different conditions adequately, and of understanding well-being itself and its normative significance, something we will consider in the next section.

Naturalism about health and disease is widely thought of as a “reductionist” view that supports a narrow “biomedical” approach to health care and downplays the importance of caring for mental health and general well-being. This is a misperception, however. Naturalists are themselves keen to emphasize that well-being is what is normatively important and that health care and even measurement of health should be guided by a concern for well-being.23 They typically argue that only by conceptually distinguishing health from well-being is it possible to discriminate between those health conditions that require genuine concern from those that do not, and to understand the very many different evaluations and societal and experiential responses that one and the same health condition may prompt in different circumstances. Moreover, it may be argued that the view that health care should focus more on communication, patient experience, and preferences or psychological well-being presupposes an implicit distinction between health in a narrow, biological, and functional sense, and the personal and social “uptake” of and reactions to it (as the very notion of “biomedicine” apparently also does). Boorse’s attempt to give a naturalist analysis of health has been strongly criticized for being less free of values and normative commitments than he himself assumes.24 This is probably correct but of little relevance to applied bioethics. For it is hard to deny that Boorse’s analysis posits a different kind of norms and values from those related with general social practices or well-being. It seems implicitly agreed on all hands that we do distinguish intuitively (albeit not perfectly) between health and disease as understood by medical science (also a social practice, for sure, but a fairly specialized one) and other kinds of conditions and treatments, though the latter may still occupy a central role in health care. Mental health remains a particularly tricky and controversial case, but even it might be understood in terms of functional efficiency.25 Even if one accepts a naturalist view of health and disease, it must be granted that there is a fairly large gray area comprising certain mental, but also so-called (putative) functional disorders, like chronic fatigue syndrome (a condition that falls squarely under the H ealth , D isease , and W ell - B ein g  

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phenomenological notion of an illness, but (still) does not clearly meet either Boorse’s criteria for an illness (as it is debated how far it entitles to medical treatment or should be accepted as an excuse) or Cooper’s normativist criteria for a disease (as it is an open question of how far it can be “medically treated”). While this need not force us to give up the distinctions and analyses that work well in the still much larger field that surrounds the gray area, it points to an important object of future studies, which may profitably aim at understanding the borderline cases more deeply, rather than using them as counterexamples to rival analyses. It also provides further reasons for focusing attention on the borderline—and interaction and interface—between genuine disease or illness and “mere” ill-being or misthriving, as well as on the very notion of well-being itself.

W HAT IS WE L L - B E I NG? Although the relationship between health and well-being is controversial, there is no discussion that well-being is highly relevant to health concerns and central to bioethical perspectives. Traditional philosophical theories of well-being have attempted to answer the question: “What is well-being?” by determining what has ultimate or non-instrumental value for an individual.26 Another complementary way of zooming in on a broad, intuitive notion of wellbeing without yet committing oneself to any substantial view is to understand it as what we care for when caring for someone, for his or her own sake.27 Well-being has been closely related to the concept of happiness, and on some views, happiness and well-being are identical, happiness being the psychological state underlying the normative attribution of well-being to persons. However, if happiness is understood as psychological or subjective well-being, many will find such an understanding too restrictive. A person has well-being to the extent that she is doing well in life. This may be thought to include factors beyond her subjective experiences or judgments of life satisfaction, like how far she actually succeeds in accomplishing something good or worthwhile. 20 

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However, well-being should not be confused with moral value: Normative concerns about well-being pertain to what is good for a person, regardless of its moral relevance. Thus, well-being is the subject of prudential rationality. Well-being and what promotes well-being provide pro tanto reasons for action. It is debatable whether these reasons are agent-relative or agent-neutral,28 but regardless of this, almost all moral theories, including bioethical theories, regard the promotion of well-being in general as essential. This may be most vivid in the case of consequentialist theories like utilitarianism, but even contemporary deontological theories will typically emphasize the duty to promote well-being, for example, in the form of a principle of beneficence.29 Well-being is thus morally relevant, but not itself a moral value—at least not as such, or necessarily. As just noted, it is widely considered an object of moral concern, and so often assigned the role of a moral value. But since it is fundamentally a prudential value, and self-interest may conflict with one’s moral obligations (which may include the obligation to impartially promote well-being), it can play other normative roles as well; and different theories of normative ethics may assign different moral significance to well-being. Nor should well-being be confused with a comprehensive notion of a good life. But as we have seen, opinions differ as to whether it is subjective or objective. While objectivists also take subjective experiences to be important ingredients in well-being, they insist that more is needed, and that things like social relationships, a healthy and humane lifestyle, or recognition by others are good for a person regardless of whether she experiences or values it as such.30 This has profound implications for bioethics. First, if health is itself an element in well-being as such, and not just a causal factor that often, but not always, contributes significantly to well-being, this gives it a more fundamental normative significance. Second, according to an objectivist view, well-being will likely be assessed in terms of functional capacity, ability to meet social norms and expectations, and so on. Although it must be taken into account that self-reports and other measures of subjective well-being are far from completely reliable (and objectivist

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views might also accommodate a concern for experiences as one of several well-being–constitutive elements), a subjective view will give greater emphasis to patient experience. It can take more seriously the judgments of disabled or chronically ill people insisting that they are doing quite well.31 And while both subjective and objective understandings of well-being are compatible with some kind of paternalism,32 the objective view tends to support more external, expertise-based and less subject-sensitive evaluations and recommendations. But which view is right? On the one hand, strong intuitions pull in the direction of subjectivism. It can be hard to make sense of objective value—value that does not depend on subjective experiences or judgments— within a contemporary worldview. On the other hand, it seems possible to be wrong about one’s well-being, and we are prone to correct others when they value or desire things that do not seem their well-being. It is common to distinguish three general types of theories of well-being: hedonism, desire-satisfaction theories, and so-called objective list theories.33 In short, hedonistic theories claim that well-being consists in a significant predominance of pleasure over pain.34 A more inclusive, contemporary notion is that of mentalist or experientialist theories of well-being.35 Experientialist theories do not necessarily reduce well-being to pleasure but argue that the well-being-constitutive goods must at least be experienced by the person to influence his or her well-being. Desire-satisfaction theorists and objectivists would typically object to hedonism that certain goods are of value, even if they are not pleasurable. For example, unpleasant knowledge about a person’s life can be argued to sometimes have value, e.g., by virtue of the person wanting such knowledge (as argued by desire-satisfaction theory), or because such knowledge objectively makes the person’s life better (as argued by objective list theories). It seems to follow from hedonism that it would be better for you to remain happily unaware that you are terminally ill than to know this unpleasant truth.36 Many would object that such knowledge might enable you to focus on accomplishing things that are important to you and so give your life a proper ending.

Another popular objection is that hedonism seems to imply that the optimal life could consist of purely virtually created pleasures, e.g., in a machine that would artificially create optimally pleasurable experiences.37 Such a life seems to be at odds with our intuitive concept of being well: we do not just want a life of experienced pleasure, but a real and authentic life. This again is not just relevant for deciding between subjective or objective theories of well-being, but for bioethics as well. How, for example, should we view the use of virtual reality or robot baby seals to comfort dementia patients? Desire-satisfaction theories claim that the satisfaction of subjective desires is constitutive of well-being,38 and this could include desires the fulfillment of which is not necessarily experienced by the desiring person. It can be argued, for example, that my life will be better if my desire for my child to be healthy is satisfied—even in circumstances where I cannot know or experience that this is actually so. But the fact one can form desires the fulfillment of which does not seem to improve, but rather detract from one’s overall well-being (like an addict’s desire for heroin) seems to tell strongly against the desiresatisfaction view. Its proponents often respond to this by demanding that desires must be sufficiently rational and informed for them to count. Though hedonists and objectivists may doubt that this solves the problem or see it as a de facto concession to their own view, the underlying thought is reflected in much medical ethics and practice. Informed consent and respect for patients’ autonomous decisions regarding their care, even when they go against clinicians’ recommendations, are emphasized widely and strongly.39 While this might also express moral concerns that are not based on a concern for well-being, it does seem to be commonly assumed that it is best for a patient to have her own wish respected. The different theories do tend to support different attitudes, actions and policies; this is part of what makes the discussion of them relevant to bioethics (arguably, different views of well-being may be just as important, or more, than different views of the normative principles). But it is also important to notice that in practice, the theories agree to a large extent on H ealth , D isease , and W ell - B ein g  

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what is important for promoting well-being, and so support many if not most of the same recommendations. Hedonists might argue that close relationships, relevant knowledge, achievement and good health are all generally excellent means for obtaining pleasant experiences, while desire-satisfaction theorists might point out that these things are, in fact, desired by almost anyone. The current field of well-being theories is by no means exhausted by hedonism, desire-satisfaction and objective list theories. For one thing, the notion of life satisfaction usually employed in empirical well-being research40 may resemble both hedonism and desire-satisfaction theories—it refers to a subjective and mental state and is often classified as a “hedonic” notion—but actually differs from them. For people’s life satisfaction judgments may not adequately reflect the quality of their experiences or the extent to which their desires are actually fulfilled. While this notion may not be adequate, anyhow, at least from a philosophical point of view,41 but merely serve as a fairly good proxy for actual well-being in empirical studies, the idea that well-being should be understood more holistically has more to be said for it.42 Holism about well-being breaks with the tendency to see well-being as merely an aggregate of positive experiences, satisfactions of desire or abstract goods. The narrative structure of a life can be seen as crucial to a person’s well-being.43 This has implications for bioethics, as the goodness or badness of an experience, health intervention or life change may depend on the overall life context—how well does it fit into a person’s general life trajectory? Even painful experiences may take on a different prudential value if they are part of a generally positive event or experience (an admittedly controversial example is pain suffered during childbirth; a probably less controversial example is pain endured as part of health-improving physical exercise). Hence while acknowledging that subjective experiences play a significant role in a person’s well-being (as even objectivists tend to acknowledge), or that instances of friendship, knowledge or achievement do, we may also have to acknowledge that it is the whole, i.e., the specific combination and structure, of 22 

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such elements that is (co-)constitutive of well-being, not merely the sum of the isolated parts. Holism about well-being also fits well with proceduralist approaches that emphasize the temporal process of achieving and maintaining well-being.44 Such a view supports an approach to health care (assuming that the promotion of well-being is a central goal of health care) that does not focus on meeting a number of antecedently identified patient interests and needs, but rather on acting on the contextualized values, interests and needs that seem to matter most in the particular situation, and is sensitive to their mutual and ongoing interaction. On this procedural approach, the care professional is seen not just as someone who “provides care,” but as a co-creator of opportunities for well-being that may not have existed or been adequately perceived beforehand.45 This may involve, for example, dealing with changing life circumstances, actual and possible experiences, intertwined emotional reactions, changing preferences, and apparent dilemmas. Such a process requires a wide variety of relevant skills—much more than making normatively correct judgments, which is often the primary focus of ethics. A general “wellbeing competence” is pertinent to health care.46 It may be assumed to include more specific competencies and processes, such as metacognition, emotion regulation, the ability to recontextualize values, norms, and life concerns in general, discover new life options, develop new interests, adapt to new circumstances, and have a flexible perspective on life in general. By highlighting the continual adjustment to external conditions of living, such a procedural approach also seems to match the classical understandings of health, with their emphasis on balance, proportion, and ongoing adjustment to circumstances.

H E A LT H, WE L L -B E I N G, A N D H E A LT H A S S E S S M E N T On all accounts, health and well-being are closely connected. The WHO has defined health in terms of nothing less than perfect well-being. Less controversially, the terms “health” and “well-being” are used

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in overlapping ways, and the corresponding notions are seldom distinguished clearly in practice. For instance, “exercise is good for people” can mean that exercise is healthy in a biologically functional sense and in the sense that it promotes well-being. Regardless of whether it is possible to account for health in terms of well-being, or whether a purely descriptive concept of health is ultimately defensible, we must consider the value of health—and then well-being takes a central place (although it remains debatable whether it is merely central or simply the only fundamental concern). How health supports well-being is highly relevant for health promotion initiatives, both at the policy level, the civil society level, and the personal level. Well-being plays a dominant, but also controversial role in the attempts to measure health and compare the severity of health conditions. So-called generic health measures aim to quantify aspects of health status and quality of life.47 Among the most widely used instruments are the EQ-5D, the Health Utilities Index (HUI), the quality of well-being scale (QWB), and the Global Burden of Disease (GBD).48 The underlying assumption of such health measurement tools is that health should be valued insofar as it constitutes or causes well-being. Values are assigned to different health states based on eliciting preferences among health states (by means of preference surveys). For example, the value 1 designates complete or perfect health, and 0 is assigned to death. In between these two extremes, health states are assigned with different “quality weights.” The QWB uses three scales representing three areas of daily functioning: mobility, physical activity, and social activity. The information provided by the measures indicates an average overall health condition or value, that is, how good or bad a person’s health is overall, with respect to its impact on the person’s well-being. This approach has been criticized for relying uncritically on the judgments of respondents, who are likely to be insufficiently informed, as people usually know very little of how it is to suffer from a certain disease (that is, how far it reduces well-being) they have not had themselves. The judgments may also reflect self-interests and so not be about the public,

but only the private value of health states.49 Instruments like the EQ-5D can thus be said to give disproportionate value to physical over mental health (even though the latter is known to be crucial to well-being) and ignore the (otherwise well-documented) ability of people to adapt to diseases and disabilities.50 Health measurement tools are used for a variety of purposes and applied very differently by clinicians, epidemiologists, or people concerned with allocating resources (health economists or policymakers). Though they are perceived by clinicians and health professionals working with screening of vulnerable and elderly people as being rather crude and imprecise tools, because they ignore factors important to well-being in individual cases,51 their shortcomings may be less significant in these contexts than when used for ration of health resources, because the measurements can be given an individual interpretation and supplemented with more intuitive assessments. In any case, the generic health measures are by themselves not sufficiently detailed or sensitive to suggest a specific treatment, nor are they reliable guides for health policymaking. But like the life satisfaction scores used for empirical research on well-being, the measures may still function as sufficiently good proxies for the real value of health states, especially when it comes to comparing the effects of medicine or interventions. New measures that promise to represent the actual impact on the well-being of different health states more accurately, and so should provide a better foundation for general health policymaking, are currently being developed (they are known as WALY’s or WELBY’S [“Well-being Adjusted Life Years”]).52 They do not rely on subjective estimates of the goodness or badness of specific health states and consider well-being not in terms of such health states, but in terms of overall subjective well-being. This will likely give more emphasis to mental and social well-being. Mental and social challenges are known to be highly detrimental to subjective well-being, even though mental disorders are estimated to be less severe than physical impairments, and the social consequences of health states play at best a marginal role in the traditional measurement approaches. However, even the H ealth , D isease , and W ell - B ein g  

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new and presumably more accurate measures still rely on subjective “life evaluations” (akin to the life satisfaction notion of well-being mentioned earlier) that may themselves be subject to biases like the ones that cast doubt on the judgments underlying the traditional measurement tools. Here, again, the choice of methodological approach depends very much on the fundamental understanding of well-being. Proponents of the new approaches argue that the value of health states must, eventually, be measured in terms of their impact on a person’s overall quality of life.53 But whether this impact is accurately reflected in the person’s judgments and experiences is a further, and still open, question, as we have pointed out above. Maybe the search for a single generic health-related well-being measure should be abandoned in favor of a combination of measures of functional impairment, estimates of the severity and impact of various diseases and disabilities obtained also by qualitative interviews with people with firsthand experience, and data on their wider social implications. Integrating such diverse information and making it useful for actual health care and policy decisions is, of course, a difficult task, and proposals for how to do it cannot themselves be normatively neutral. On the other hand, such complex assessments are performed regularly in medical practice, for example, by general practitioners routinely doing general medical estimates. It may also seem to match the holistic and process-oriented view of well-being mentioned earlier, as it is open to the possibility that the contribution to well-being of different factors or elements may differ depending on the context. It should also be noted that the assumption that the value of health must be understood in terms of its impact on well-being, while widespread and seemingly natural, is not itself uncontroversial. Health may impact other normatively significant factors than well-being, as a disease or disability state can, for example, reduce a person’s autonomy or possibilities for political participation or acquisition of knowledge. It may be said that if these things are also intrinsically valuable, then they should be considered elements in a comprehensive notion of well-being (as we would argue). But it is possible to see them as 24 

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different and possibly competing values.54 And when the goal is to measure public and not merely private health, one should take into account health impact factors that go beyond personal well-being, like productivity, social stability, sustainability, etc. It may be argued, in our opinion persuasively, that such factors ultimately derive their value from their contributions to well-being, which is a state of individuals, and so in the end, the value of health just is its impact on— aggregated or total—personal well-being. However, this view requires independent justification. And in practice, we have to look at how health contributes to a wide variety of factors that are considered roughly beneficial or detrimental to human needs, without considering their actual or more precise consequences for personal well-being.

CO N C LU S I O N The nature and bioethical significance of health, disease and well-being are subject to very different views. This is hardly surprising. But it should also be noticed that there is in fact widespread agreement on a number of issues: That disease typically involves dysfunction; that health and disease are centrally important to well-being, and that this accounts for at least a large part of their normative significance; that the impact on well-being of a specific dysfunction depends on the context, and that dysfunction itself can thus not be used to straightforwardly explain or justify medical practices or policies, which requires further normative considerations and knowledge of the context; and also that mental health and well-being tend to be insufficiently captured by existing approaches to health measurement. The most pervasive disagreement concerns the extent to which we should keep separate our notions and practices or put them together into a single approach. Should we assess dysfunction independently of its consequences for well-being, or should we look to well-being always and from the very start? Should we distinguish health care from a caring attitude or policy in general? Similarly, should we measure the consequences of health in terms of

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impact on physical discomforts and activity limitations, or should we aim at measuring its wider impact on personal or even total well-being? This may sound like an instance of the perennial conflict between “analytic” and “holistic” approaches to health care, but it need not be so. One can favor a generally holistic approach but maintain that it must be internally structured in order to be accurate and effective. As we have noted, even normativists tend to implicitly distinguish narrow “biomedical” health concerns from broader ones. Yet there is also a concern for what might be called conceptual or communicative ethics. One of us (Engelsen) worries that adopting a naturalist view of disease may in practice lead to an overly narrow, physiology-oriented approach to health care, while two of us (Christiansen and Klausen) worry, conversely, that substituting the aim of promoting well-being in general for more specific goals and focuses might muddle up things and place unrealistic burdens on health professionals. In any case, we have seen that the specific understanding of well-being has large biomedical importance. This means that by gaining a better understanding of well-being—not necessarily on the most general philosophical and conceptual level, but an understanding of what matters for well-being in more specific contexts—one may be able to handle normative problems that otherwise seem intractable. For example, apparent dilemmas as to how both to ensure well-being and respect a patient’s autonomy may dissolve, or at least become mitigated, if one is able to acquire a comprehensive and nuanced understanding of what is good for the person in question. Finally, it should be noted that while basic disagreements are likely to persist, recognizing the strengths and limitations of different conceptions is often sufficient for making competent assessments or contributing to debates on more specific bioethical questions. Since bioethics is becoming increasingly interdisciplinary and empirical, it is possible to see the contrasting views not as conflicts awaiting philosophical resolutions, but rather as reflecting different understandings of actors in the field, and to treat the different notions as part of a toolkit for describing and working with them in practice.

N OT E S 1. Norman Daniels, Just Health Care (Cambridge University Press 1985), 32ff. 2. See, for example, Richard Kraut, What Is Good and Why: The Ethics of Well-Being (Harvard University Press, 2007); for a critical discussion, see Peter Duncan, “Health, Health Care and the Problem of Intrinsic Value,” Journal of Evaluation in Clinical Practice 16, no. 2 (2010): 318–22, DOI:10.1111/j.1365-2753.2010.01392.x. 3.  Shelly Kagan, Normative Ethics (Westview, 2016). 4.  Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 8th ed. (Oxford University Press, 2019); Tom L. Beauchamp, “The Principle of Beneficence in Applied Ethics,” in The Stanford Encyclopedia of Philosophy, ed. Edward N. Zalta, Spring 2019 Edition, https://plato.stanford.edu /archives/spr2019/entries/principle-beneficence/. 5. Plato, Republic, 444d. 6.  Claude Bernard, Introduction à l’étude de la Médecine Expérimentale (J. B. Baillière et Fils, 1865). English Translation by H. C. Greene (Dover, 1949); Walter B. Cannon, The Wisdom of the Body (London: Kegan Paul Trench, Trubner & Co., 1932). 7.  Norman Sartorius, “The Meanings of Health and Its Promotion,” Croatian Medical Journal 47, no. 4 (2006): 662–64. 8. Roger Crisp, “Well-Being,” The Stanford Encyclopedia of Philosophy (Fall 2017 Edition), Edward N. Zalta (ed.), https://plato.stanford.edu/archives/fall2017/entries /well-being/. 9. World Health Organization, Basic Documents, 47. Ed., 1 https://apps.who.int/iris/bitstream/handle/10665 /44192/9789241650472_eng.pdf. 10.  D. Daniel Callahan, “The WHO Definition of Health,” The Hastings Center Studies 1, no. 3 (1973):77–87. 11.  Daniel M. Hausman, Valuing Health (Oxford University Press, 2015), 18. 12. Christopher Boorse, “On the Distinction between Disease and Illness,” Philosophy of Public Affairs 5 (1975): 49–68; “Health as a Theoretical Concept,” Philosophy of Science 44 (1977): 542–73. 13.  Boorse, “Health as a Theoretical Concept,” 543. 14.  V. Rachel and R. V. Cooper, “Disease,” Studies in History and Philosophy of Biological and Biomedical Sciences 33, no. 2, 263–82. 15.  Elselijn Kingma, “Contemporary Accounts of Health,” in Health: A History, ed. Peter Adamson (Oxford University Press, 2019), 304. 16.  Boorse, “On the Distinction between Disease and Illness.” 17. Fredrik Svenaeus, “The Body Uncanny—Further Steps towards a Phenomenology of Illness,” Medicine, Health Care and Philosophy 3, 125–37 (2000), https://doi .org/10.1023/A:1009920011164; Kevin Aho, A Phenomenology of Sickness, Disease and Illness (Lexington, 2009); Havi Carel, Phenomenology of Illness (Oxford, 2016). H ealth , D isease , and W ell - B ein g  

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18. Carel, Phenomenology of Illness, 17. 19.  Loc cit. 20.  Loc cit. 21.  Søren Harnow Klausen, “Phenomenology of Illness and the Need for a More Comprehensive Approach,” Journal of Medicine and Philosophy 46, no. 5 (2021): 630–43, DOI: 10.1093/jmp/jhab019. 22. Thomas Schramme, Theories of Health Justice: Just Enough Health (Rowman & Littlefield, 2017). 23.  Boorse, “On the Distinction between Disease and Illness”; Hausman, Valuing Health. 24.  Elselijn Kingma, “What Is It to Be Healthy?” Analysis 67, no. 294 (2007): 128–33. 25.  Thomas Schramme, “On the Autonomy of the Concept of Disease in Psychiatry,” Frontiers in Psychology 4 (2013): n. pag., https://doi.org/10.3389/fpsyg.2013.00457. 26.  Crisp, “Well-Being.” 27. Stephen Darwall, “Welfare and Rational Care,” in Welfare and Rational Care (Princeton University Press, 2019), https://doi.org/10.1215/00318108-113-4-577. 28.  Raffaele Rodogno, “Prudential Value or Well-Being,” in Handbook of Value: Perspectives from Economics, Neuroscience, Philosophy, Psychology and Sociology, eds. Th. Brosch and E. Sander (Oxford University Press, 2019), https://doi .org/10.1093/acprof:oso/9780198716600.001.0001. 29.  See Beauchamp and Childress, Principles. 30.  Christopher M. Rice, “Defending the Objective List Theory of Well-Being,” Ratio 26, no. 2 (2013): 196–211, https://doi.org/10.1111/rati.12007. 31.  Gary L. Albrecht and Patrick J. Devlieger, “The Disability Paradox: High Quality of Life against All Odds,” Social Science and Medicine 48, no. 8 (1999): 977–88, doi: 10.1016/s0277-9536(98)00411-0. 32. See, for example, chapter 7 on paternalism in this volume. 33.  Derek Parfit, Reasons and Persons (Clarendon Press, 1984). 34. Roger Crisp, “Hedonism Reconsidered,” Philosophy and Phenomenological Research 73, no. 3: 619–45. 35.  W. van der Deijl, “The Sentience Argument for Experientialism about Welfare,” Philosophical Studies 178, no. 1: 187–208, https://doi.org/10.1007/s11098-020-01427-w. 36. Kagan, Normative Ethics, 35. 37. R. Robert Nozick, Anarchy, State, and Utopia (Basil Blackwell, 1974). 38.  Mark C. Murphy, “The Simple Desire-Fulfillment Theory,” Noûs 33, no. 2 (1999): 247–72.

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39.  Rebecca Roache, “Why Is Informed Consent Important?,” Journal of Medical Ethics 40 (2014): 43536. 40.  Ed Diener, “Subjective Well-Being,” Psychological Bulletin 95, no. 3 (1984): 542–75. 41. Daniel M. Haybron, The Pursuit of Unhappiness (Oxford University Press, 2008). 42.  Søren Harnow Klausen, “Dealing with Happiness: In Search of a Personal Happiness Policy,” in Happiness and Friendship, eds. T. Delaney and T. Madigan (Vernon Press, 2018), 91–99. 43.  David Velleman, “Wellbeing and Time,” Pacific Philosophical Quarterly 12 (1991): 48–77; Søren Harnow Klausen, “Ethics, Knowledge, and a Procedural Approach to Wellbeing,” Inquiry (2018), DOI: 10.1080/0020174X.2018.1529619. 44. Klausen, “Ethics, Knowledge, and a Procedural Approach”; Valerie Tiberius, The Reflective Life: Living Wisely within Our Limits (Oxford University Press, 2019), https:// doi.org/10.1093/acprof:oso/9780199202867.001.0001. 45. Klausen, S. H., Christiansen, R., Emiliussen, J., & Engelsen, S. (2021). Emotions and Values in Practice: The Case of Elderly Care, Danish Yearbook of Philosophy (published online ahead of print 2021). doi: https://doi.org/10.1163 /24689300-bja10020 46.  Engelsen,S. 2022. “Wellbeing Competence” Philosophies 7, no. 2: 42. https://doi.org/10.3390/philosophies 7020042. 47.  David L. Streiner, Geoffrey R. Norman, and John Kearney, Health Measurement Scales: A Practical Guide to Their Development and Use (Oxford University Press, 2014). 48.  Jeffrey R. J. Richardson et al. “Multiattribute Utility Instruments and Their Use,” in Encylopedia of Health Economics, ed. A. J. Culyer, vol. 2 (Elsevier, 2014), 341–57. 49. Hausman, Valuing Health, Ch. 8. 50. Happiness Research Institute and Leaps by Bayer, Wellbeing Adjusted Life Years (Leaps by Bayer, 2020). 51.  Thor Hennelund Nielsen, Lasse Nielsen, and Søren Harnow Klausen, “Functions and Assumptions of Health Assessment Tools” (forthcoming). 52. Happiness Research Institute and Leaps by Bayer, Wellbeing Adjusted Life Years. 53.  Ibid.; and John Broome, “Measuring the Burden of Disease by Aggregating Well-Being,” in Summary Measures of Population Health: Concepts, Ethics, Measurement and Applications, eds. C. J. Murray et al. (World Health Organization, 2002), 91–113. 54. Hausman, Valuing Health, 60.

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CHAPTER 3

Bioethical Principles Nana Cecilie Halmsted Kongsholm

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ioethics, as the discipline concerning the ethics surrounding biomedical technologies and practices, finds itself at a crossroad between abstract philosophical theory and hands-on real-world experience. This has led numerous scholars to argue over the proper role and extent that theory should be granted within bioethics, and even though the debate has been going on since the emergence of bioethics in the 1970s, it is far from settled. One thing that complicates the picture is that bioethics as a discipline is not clearly delineated from other fields. At the most basic level, bioethics concerns itself with advances and practices in biology and medicine—the values and principles of which often overlap with other scholarly and professional fields; such as medicine, theology, politics, and law. This can be seen in the case of abortion: in arguing whether or not abortion should be allowed, bioethicists draw on knowledge about fetal development (medicine), values concerning human intervention in nature (theology), and reproductive rights (law). Additionally, bioethics is practiced in several different arenas, and accordingly takes different shapes. As a purely academic discipline (e.g., in philosophy classrooms) bioethics has no constraints with regard to time and practicalities, and the bioethicist can take as long as she wants to attempt to reach a conclusion on a topic; moreover—and

importantly—there is no external demand that this conclusion be reached at all. This luxury exists to a lesser extent in policy-oriented bioethics, where bioethicists assist in developing policies affecting larger numbers of people (e.g., policies regarding organ transplantation)—here the bioethicist may provide her input from whichever moral theory or philosophical standpoint she subscribes to and may take her time in weighing different positions against each other, but at some point a solution needs to be reached. Lastly, when bioethics is practiced in the clinic— that is, clinical ethics—and concerns, for example, forming policies and guidelines for hospital wards and emergency rooms, the pressure to reach a decision is even greater, and decisions need to be made— it may literally be a question of life or death. This illustrates the breadth of scenarios in which we may properly say that bioethical inquiry and reasoning have a major role—but it is also fairly easy to see why the different circumstances surrounding each make for different takes on which role theory should play. Bioethics as a discipline encompasses all these scenarios and is not reducible to one—hence there is something to be said for considering the role of theory across its applications. In this chapter I survey the different theoretical approaches bioethicists have taken, with consideration 27

to their strengths and shortcomings, and discuss alternative approaches not focused on theory.

F OUN DATIONA L T H E O R I E S ( OR “HIGH THE O RY”) Bioethics as a discipline emerged in the early 1970s. Moral philosophers were called on to provide their theoretical expertise in settling the ethical questions that arose alongside the surge in medical advances— for example, should abortion be allowed, and if so, up to what point? Is cloning ethically problematic, and why? And so on. An intuitive approach for a moral philosopher working in bioethics may be to adopt a standard moral theory and apply it to the problem at hand. This was the avenue first taken by early bioethicists. Moral philosophers by training, they employed one (or more) of what can be termed foundational theories: consequentialism (or utilitarianism), deontology (or Kantianism), and virtue ethics, and engaged in topdown reasoning about the issue in question.

Consequentialism Consequentialism holds that the right moral action is the one that results in the best consequences. As such, the paramount feature in determining whether an action is morally right is the consequences it produces, not the action itself. Hence, consequentialism would find that the sacrifice of one person’s life is morally defensible if it saves five other people, all other consequences equal. A variant of this theory is utilitarianism (most prominently attributed to Jeremy Bentham and John Stuart Mill), which demands the production of maximal balance of good consequences over bad consequences—or, the greatest number of good consequences for the greatest number of people. What distinguishes utilitarianism from generic consequentialism is its theory of value, namely happiness or pleasure, and absence of pain. In determining what counts as good or bad consequences, utilitarianism thus has a narrow focus on these factors, whereas consequentialism takes a wider approach. 28 

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Within utilitarianism, we may distinguish between act utilitarianism and rule utilitarianism. Act utilitarianism focuses on each particular action and its consequences, whereas rule utilitarianism views a particular action as part of a bigger picture: does allowing the execution of this action in general produce better consequences than not allowing? Returning to the case of abortion, the consequentialist would frame all questions of its legitimacy in terms of its consequences. Employing the distinction between act and rule utilitarianism, the act utilitarian would focus on whether allowing a particular abortion would produce a better outcome that prohibiting it (e.g., if the parents are ill-fit to properly nurture the child), while the rule utilitarian would look at the wider consequences: for example, does allowing abortion produce a society in which teens are less than careful in terms of contraception?

Deontology Some scholars, however, are not convinced that consequences are the prime moral factor in evaluating an act or practice. These scholars, called deontologists, hold that there are actions that are simply morally prohibited, even if performing them would have the best overall consequences. They thus place weight not exclusively on the consequences of the act but rather on the nature of the act. Finding its etymological roots in the Greek word deon, meaning duty or obligation, deontology as a moral theory states that the right- or wrongness of an action depends on whether it follows a set of duties/ obligations that we as humans owe to each other qua our being human. The most well-known deontologist is arguably Immanuel Kant, who expresses this deontological idea in his ultimate principle of morality, the categorical imperative: “Act only according to that maxim whereby you can, at the same time, will that it should become a universal law.”1 The gist of this principle is that there are certain things that we are obligated to do or refrain from doing, irrespective of their consequences—because our failure in doing so is inconsistent with how we rationally desire the world to be. Take lying, for example: it may be convenient

from time to time to tell a lie, but we cannot consistently will that it be allowed to lie whenever convenient, as our notion of truth and our trust in other people would crumble, resulting in our inability to successfully lie at all. Kant also formulates the categorical imperative in a different way, “Treat every person as an end and never solely as a means.”2 This means that we may never use another person solely for our own goals but also have to recognize that they are autonomous individuals with goals of their own that require respect (Kant derives this second formulation from the first: we cannot meaningfully and consistently will the claim that a person is merely a means to an end to be a universal law). Taking a deontological approach in bioethics means embracing the view that certain things are not allowed and certain things need to be adhered to, even if doing so would not produce the best overall consequences. In the case of abortion, the deontologist is free to argue that terminating the development of the fetus qualifies as the killing of another human being; one thing that we are bound by our humanity not to do—and on this ground should be considered immoral and prohibited. We also find the deontological spirit in other areas of bioethics. Research using human subjects— which in its nature uses persons to meet other people’s ends—must properly protect and compensate participants as a way of recognizing their moral status. And patient–doctor confidentiality can also be said to be deontological in nature: the doctor is obligated to keep a patient’s secrets, even if divulging those secrets would produce the best consequences.

Vir tue Ethics In contrast to deontology and consequentialism, which both highlight the act, virtue ethics focuses on the agent and his or her moral disposition—stating that the right thing to do in a given situation is to do what a virtuous person would do. This in turn, of course, raises the question of what it means to be a virtuous person. In virtue ethics literature, there is no unanimous agreement on this, but virtues often

listed are kindness, honesty, and generosity. A virtuous human being is one that acts in accordance with such values, and the right moral action is thus the one that a virtuous person would take or endorse. According to classical virtue ethicists, such as Aristotle, our motivation to be virtuous beings is that it is in this manner we can achieve a state of eudaemonia— the highest state of human thriving or flourishing. Compared to consequentialism and deontology, virtue ethics has proven more difficult to apply directly in coming to moral conclusions about specific technologies and practices,3 as it does not provide direct guidance for actions—a factor which, as mentioned, is appreciated when bioethics operates anywhere outside the classrooms and thus does not enjoy the luxury of no time constraints. On the other hand, a virtue ethics approach may be well-aligned with the values that (many believe) ought to govern the ideal daily conduct of a nurse or doctor—for example, vigilance and compassion.

P R O B L E M S WI T H H I G H T H E O RY IN BIOETHICS It is not difficult to understand why early bioethicists took a high theory approach. At this time all three theories held a lot of merit in the scholarly landscape, and at this time it seemed obvious that this would also be the case with respect to bioethical matters (furthermore, this also meant that they did not have to invent a whole new theoretical apparatus). The theories previously outlined are still standing strong in much ethical theory and scholarship—however, with time they have proven difficult to apply in bioethics. There are several reasons for this. First, in order to employ a foundational moral theory as a guideline for decision-making, we initially need to agree on which is the correct one. One need only to attend an ethics seminar to realize that this matter is, even after centuries, far from settled—there is still no unanimous agreement as to who wins in a battle between deontology, consequentialism, and virtue ethics. Additionally, there are substantial disagreements among proponents of the same general B ioethical P r inciples 

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moral theory—consider, for example, act versus rule utilitarianism, as accounted for earlier. Second, appealing to high theory fails to recognize that many situations and practices that fall under the bioethical umbrella are very often under the constraints of real life. For example, high theory is nearly impossible to employ as a guiding tool for clinicians, if they do not have proper philosophical training. And the challenges encountered in the setting of the clinic or policy-making are often of a nature where there is no time to engage in theoretical debate and reflection about which moral theory we should follow. Should we, to accommodate this challenge, agree on one moral theory, we end up with the same problem as shown earlier; who is to say which is the correct moral theory? And more importantly, how are we to defend this particular theory to the often large numbers of individuals who are affected by the decisions based upon it?

M ID-LE VE L PR I NCI P L E S AND THE COM MO N MO R A L I T Y The challenges faced by high theory ushered in a new approach to bioethics: mid-level theorizing. This approach was most prominently brought forward by Tom Beauchamp and James Childress’s 1979 book Principles of Biomedical Ethics. In the book, Beauchamp and Childress establish four moral norms to guide right action, set forth in four principles:4 1. Autonomy (self-direction of one’s life) 2. Beneficence (enhancing welfare for others) 3. Nonmaleficence (avoiding imposing harm on others) 4. Justice (according to each person her due) Since the third edition of their book, Beauchamp and Childress take the foundation of the four principles to be what they term common morality: a universal morality, to which all morally serious persons can subscribe. This approach rejects the preoccupation with finding one moral theory to guide bioethical decisions: given that the common morality is one all 30 

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persons, irrespective of their moral or even religious inclinations, can subscribe to, we have a model for reasoning that requires no underlying metaphysical or theoretical commitments. As Beauchamp and Childress state, “Common morality is found in all cultures, whereas particular moralities are found only in one or more cultures forming a subset of all cultures.”5 They furthermore highlight the historicist nature of the four principles: that they are the ones that over time and the history of mankind have proven to be conducive to human flourishing. The principled approach focuses on to which extent a given practice pays respect to the four principles. To base bioethical reasoning on the common morality and the four principles, then, offers a framework in which all persons’ conceptions of the good may be embraced.

Critiques of Principlism Beauchamp and Childress’ seminal work still stands as one of the most influential in modern bioethical theory, and their approach to medical ethics is taught far and wide, across countries and fields. It is, however, not without its critics. One line of criticism holds that Beauchamp and Childress offer no guidance as to how the principles are to be ranked—in a situation where two or more principles conflict (e.g., autonomy and beneficence), which should hold priority? This problem is serious enough in a theoretical setting but can be fatal in a setting with time constraints—here we need clear-cut rules for guidance on how to weigh different moral considerations. Another line of criticism questions the commonality of the common morality: they hold that the four principles as a model for bioethical inquiry are highly influenced by Western individualist ethics and are as such incommensurable with the moral codes found in other cultures, which emphasize and embrace more collective values. As Subrata Chattopadhyay and Raymond De Vries write, While the “principles” are often framed as meta-cultural, they derive from Western sec-

ular belief-systems that are not responsive to either the cultural ethos and moral sensibilities of ethnic minorities of the West or the emotional needs and religious/spiritual world­ views of people in the non-Western world.6 For example, the concept of individual autonomy, arguably one of the most foundational principles in modern medical ethics, can, when imported into a collectivistic culture, at best be difficult to make sense of, at worst be directly harmful. Many cultures in non-Western societies view not the individual, but the family, clan, or village, as the most important ethical unit. They place great emphasis on interconnectedness and the duties and responsibilities inherent in this unit, giving rise to a relational ethic in which the collective takes primacy over its individual members. This is a recurring issue among researchers attempting to collect informed consent from members of such societies.7 The standard procedure insists on formal consent from each individual, but the relational ethic in such societies demands that the elder or clan leader make decisions on behalf of his collective. Insisting on individual informed consent in such a context may have harmful consequences by (1) violating the ethical codes held by collective members; (2) in turn creating distrust and anxiety among collective members and researchers; and (3) consequently making collective members refuse to give consent and/or withdraw from research, effectively undermining the procurement of data needed for research. In order to be applicable in a globalized world with differing moral and ethical codes, bioethical scholars must take such issues seriously. The first step is acknowledging the limitations of traditional moral reasoning when it comes to engaging with real-world issues in a context with differing values and perspectives, something that principlism may struggle to do.

ALT E RNATIVE A P P R OACH E S Modern bioethics increasingly recognizes the challenges with theoretical or principle-based approaches,

and accordingly scholars have suggested and defended alternative approaches for appropriately engaging with issues and cases within the realm of bioethics. In the following I shall survey two such approaches: casuistry and feminist bioethics.

Casuistr y Taking a lesson from the problems encountered with top-down reasoning (or high theory), some scholars advocate casuistry, or case-based reasoning, as a method for bioethics. They hold that we can only make reliable moral judgments about a case when we have an intimate understanding of the case and its features, and also take previous and relevantly similar cases into account. As formulated by David Degrazia and Tom Beauchamp, Ethics develops from a social consensus formed around cases, which can then be extended to new cases without loss of the accumulated moral wisdom.8 In contrast to taking moral theories and values as the starting point when evaluating cases—as had been the case in previous theorizing—the casuist proceeds in a bottom-up fashion; moving from the specifics of a particular case to moral theories and principles. As such, the casuist would hold that moral principles are not abstract and independent phenomena, but in fact emerge from our consideration of cases.9 So what might casuist reasoning look like? In the most general terms, when the casuist encounters a case, he or she looks to the past for a similar case, recalls what is assumed to be the proper response to this particular case, and applies this reasoning to the case at hand. However, the case at hand might have features that are not properly captured or accommodated by the previous reasoning, and the casuist takes a lesson from this and amends the reasoning currently being employed—to be used in a future case similar to the current one. It is through this method that our moral principles are developed and refined. It should be noted here that some casuists take a less radical tack, holding that the method of B ioethical P r inciples 

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case-based reasoning should be viewed as a complement to approaches to bioethics that take moral principles to be morally binding, and that their normative force and the moral knowledge represented by them is not reducible to our responses to cases.10 It may be contended, however, that this version of casuistry is hard to distinguish from standard top-down application of principles. Be that as it may, what the casuist at minimum brings to the table is a heightened focus on the specifics of each case and the attitude that one needs to fully engage with the case to morally evaluate it. As such it distances itself from armchair philosophy and from conducting bioethics without engaging with the specifics of the practice or situation the inquiry concerns. As a method in bioethics, casuistry offers several advantages. First, it offers the promise of reaching agreement about cases among those with different theoretical commitments, making it suitable for decision-making in a pluralistic society.11 This offers solutions to the problem of applying “Western” bioethics in non-Western context (as it may be easier to reach agreement on cases than on theories or moral frameworks); and furthermore, it offers the Western bioethics a method of considering the specifics of a case that would remain hidden taking a predefined moral stance. Second, as a method for decision-making, casuistry is far more suited for the actual world of medicine than high-flying theories. Casuistry does not demand mastery of grand theories but requires us to only look to the details of the case for guidance— which has its obvious advantages in a context marked by constraints on time and resources. Third, as case-based reasoning involves looking closely at all features of a specific case that may be morally relevant, this method might turn our attention to important aspects of a case that would have stayed obscured, had we approached the case from a predefined moral outlook. These advantages also, however, represent the weaknesses of casuistry. To start, the radical version of casuistry, rejecting predefined moral theories and principles, would seem to need at least some 32 

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independent principles to give it direction—otherwise it is difficult to see why we should trust its outcomes, if we are not sure whether it resonates with principles that we recognize and approve of. To escape this criticism, the casuist would need to shift into a more moderate territory—with the pitfall of approaching standard top-down reasoning. Furthermore, radical casuistry, placing the weight of moral evaluation on cases previous to the one at hand— thus being inherently backward-looking—runs the risk of being morally conservative. And if moral evaluation is derived solely from how we reasoned in a previous case, radical casuistry is ill-equipped to deal with social critique coming from principle- or theory-based approaches.12

Feminist Bioethics In recent times, mainstream bioethics—be it topdown or bottom-up—has been the subject of criticism from the growing fields of feminist philosophy and feminist social theory. This development should be viewed in relation to how modern bioethics increasingly does not limit itself to the clinic or to biotechnology but also extends its interest in fields that are not solely medical but also have a social component—for example, public health and reproduction. It is when venturing into these fields that the inadequacy of the traditional bioethical outlook becomes most apparent. The critique raised by feminists toward traditional bioethics is two-layered: on one level, they state that traditional bioethics has not engaged properly or satisfyingly in the biomedical issues that disproportionately affect women—for example, pregnancy, and in particular, abortion should be conceptualized and articulated as something that happens to a woman and her body, and not as a matter of abstract theorizing about fetal moral status. On another level, they criticize the morality of much modern bioethics as masculine, privileged, and abstract, and thus out of touch with the moral realities of those concretely affected by bioethical reasoning and whom policies actually affect. To a large extent, what has historically been considered good moral reasoning and practice has been viewed in

terms associated with the masculine: reason over emotion, objectivity over subjectivity, the public over the private. This is in contrast to the lived experience of not just women but also of societies and cultures that place great ethical value on relational ties (as such, this claim is similar to the recent critique leveled against bioethics as Western-centric, as accounted for in relation to principlism discussed earlier). This line of critique engages with the traditional ideal of the individual and individual autonomy, as one that is free from ties, and may illustratively be exemplified using the common metaphor “every man is an island.” According to feminist scholars, this model is inadequate, as it gives no attention to the contextual factors and details of personal experience that, often to a great extent, in fact, influence autonomous decision-making. We see this (flawed) mode of reasoning in the practice of informed consent: in both literature and guidelines, morally adequate informed consent—understood as consent that is sufficiently informed and fully autonomous—is made up of the consentee’s reading, understanding, and signing a sheet of information. This conception completely ignores all other factors that patients and research subjects, in virtue of their humanity and situatedness, in fact bring to the consent situation—particular power dynamics, trust relations, obligations and responsibilities toward family members, just to name a few candidates—factors which have been demonstrated to play a much bigger role in consenting than the information provided on the consent form.13 Not directing adequate attention to the actual lived experience of its subjects renders bioethics not only theoretically inadequate, but it may also be downright harmful. This is especially pertinent when bioethics ventures outside the classroom and influences real world policies to be employed in, for example, medical care. To take one example, in late 2018 a particular policy was implemented in maternity wards in the capital region of Copenhagen, Denmark: women giving birth were to leave the hospital four hours after delivery, if there were no complications. This policy, introduced as part of the capital region’s budget plan, effectively sends brand-new mothers out of the hospital left to their

own devices and thus overlooks the physical, social, and emotional needs of the woman after giving birth (especially for first-time mothers)—in spite of these needs being extensively documented and appreciated not only in Western societies but across cultures, and additionally in spite of evidence that these needs not being met results in a much higher risk of complications such as post-partum depression and difficulty in establishing breastfeeding, with possibly detrimental and long-lasting effects on the mother, the baby, and their immediate family. This policy was later withdrawn, but it can be speculated that if policymakers had paid proper attention to the reality and lived experience of the individuals it would affect—in this case, the birthing women—such a policy may have never seen the light of day.

CO N C LU S I O N Since its inception in the early 1970s, bioethics has come a long way and undergone several shapeshifts. The first “waves” of theorizing, taking the guise of either high theory or principlism, meant that bioethics was initially practiced as a form of applied ethics, working in a top-down fashion: moving from pre-existing general moral values and concepts, and applying them, in their existing form, to particular cases. Several scholars eventually took issue with such a unilateral approach, giving rise and space to more reality-sensitive, bottom-up approaches such as casuistry and feminist bioethics. This development is not, however, solely of theoretical interest but also of practical and political importance. As we have seen, the unilateral direction from theory to practice may prevent actual emerging issues in the medical realm from having influence on the moral framework that guides this particular field. This may serve to separate our moral concepts from reality. This creates a problem for philosophical quality. Moreover, it may also create a problem for practice: to the extent that bioethics is a discipline that seeks to exert influence on issues outside the classroom (e.g., in clinics and policy-making), the upshot may be decisions, guidelines, and policies that at best B ioethical P r inciples 

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ignore the real needs of those affected and at worse harm them. The cases of insisting on individual informed consent in collectivistic societies, and the four-hour-stay policy for women giving birth, particularly, perfectly illustrate this point. To accommodate this serious challenge, bioethical inquiry is required to pay qualified attention to the social, cultural, religious, and political realities surrounding the issues it engages with—as formulated by feminist theorists, the lived experience of those involved and affected. Philosophers cannot heed this challenge alone, but should welcome the perspectives and skills of sociologists, anthropologists, theologists, and the like. This is also a call for widening the horizon for what should be considered methods in bioethics: theoretical discussion and conceptual analysis could advantageously be supplemented with, for example, fieldwork and qualitative studies addressing the issue and individuals the inquiry concerns. What this may mean for the field of bioethics is that to be truly relevant for the real world, it should not solely be theoretically grouped with philosophy—and accordingly, that bioethicists need not be philosophers.

N OTE S 1.  Immanuel Kant, Groundwork for the Metaphysics of Morals, trans. J. W. Ellington (Indianapolis: Hackett, 1993), 421. 2.  Ibid., 429.

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3. For one well-known attempt, see Rosalind Hursthouse, “Virtue Ethics and Abortion” (1991). 4.  John D. Arras, Methods in Bioethics: The Way We Reason Now, eds. James Childress and Matthew Adams (New York: Oxford University Press, 2017), 5. 5.  Tom Beauchamp and James Childress, Principles of Biomedical Ethics (New York: Oxford University Press, 2009), 4. 6. Subrata Chattopadhyay and Raymond de Vries, “Bioethical Concerns Are Global, Bioethics Is Western,” Eubios Journal of Asian and International Bioethics 18, no. 2 (2008): 106–9, p. 3. 7.  See, for example, Nana C. H. Kongsholm, Jesper Lassen, and Peter Sandøe, “‘I Didn’t Have Anything to Decide, I Wanted to Help My Kids’—An Interview-Based Study of Consent Procedures for Sampling Human Biological Material for Genetic Research in Rural Pakistan,” AJOB Bioethics 9, no. 3 (2018): 113–27. 8. David Degrazia and Tom Beauchamp, “Philosophy: Ethical Principles and Common Morality,” in Methods in Medical Ethics, eds. Jeremy Sugarman and Daniel P. Sulmasy (Washington, DC: Georgetown University Press, 2010), 37–53, esp. 45. 9.  See, for example, Stephen Toulmin, “The Tyranny of Principles,” The Hastings Center Report 11, no. 6 (1981): 31–39. 10.  See, for example, Albert Jonsen, “Casuistry: An Alternative or Complement to Principles?,” Kennedy Institute of Ethics Journal 5, no. 3 (1995): 237–51. 11. Ibid. 12. Arras, Methods in Bioethics. 13.  Helene Nobile et al., “Participants’ Account on Their Decision to Join a Cohort Study with an Attached Biobank: A Qualitative Content Analysis Study within Two German Studies,” Journal of Empirical Research on Human Research Ethics 11, no. 3 (2016): 237–49; Sarah Wadmann, “Informeret samtykke i kliniske forsøg: teknikaliteter, tillid og tætte relationer,” Nordic Journal of Applied Ethics 7, no. 2 (2013): 31–46.

CHAPTER 4

Neurodiversity Kenneth Shields

S

uppose you awoke one morning to find that only one in seventy people requires eight hours of sleep, such that most people thrive on just a quarter of that sleep time (perhaps even managing for short periods on only one hour).1 Career opportunities and meetings may be scheduled around this two-hour sleep schedule, as would social gatherings. You may then find yourself struggling to maintain employment or sustain meaningful relationships with friends and family. And your overall physical and mental health would likely deteriorate as you attempt to align your life with this “normal” sleep schedule.2 In effect, you may struggle to function in this new society. It may then appear that your “sleep-atypical” condition is dysfunctional, disordered, or disabling (“atypical” and “typical” in this context refers to statistical prevalence across the human population). You could be viewed as unhealthy, and thus clinicians might offer therapies, prescriptions, or even surgeries to help alleviate your dysfunction. Once widely available and affordable, there could be considerable social pressure to pursue some of these treatments. Moralizing your condition in this way could lead to further stigma and prejudice (compare addiction/rehabilitation and obesity/“lifestyle”). But isn’t the amount of sleep we expect people to get just a matter of convention? Is the individual who needs eight hours of sleep obviously living a less valuable life than those who only require two

hours (societal pressures notwithstanding)? Besides, if there are no other associated health risks with needing more sleep than others (e.g., shortened lifespan), and if this does concern one in seventy people, then is it even accurate to call it a disordered condition? Suppose then you begin to advocate for a kind of sleep/ wake diversity: differences in the amount, or even the timing, of sleep required between humans shouldn’t be pathologized.3 Maybe you’d join a new political movement to defend the rights and interests of sleep/ wake-divergent individuals (i.e., individuals whose sleep/wake cycles diverge from the norm)—to raise awareness of “sleep/wake-typical” prejudice and bias, and to remove barriers to—and design accommodations for—complete societal inclusion. Neurodiversity is the notion that some neurological conditions presently viewed as disordered or dysfunctional should instead be viewed as mere variations across a vast spectrum of human brain architecture. Just as in our sleep scenario, defenders of a neurodiversity approach to such conditions hold that these differences shouldn’t be pathologized. A new political movement, born of the autism rights movement, has arisen to defend the rights and interests of neurodivergent individuals (i.e., individuals whose neurology diverges from the norm)4—to raise awareness of neurotypical prejudice and bias and to remove barriers to—and design accommodations for—complete societal inclusion. 35

After a very brief overview of the origins of the neurodiversity movement and the concept of neurodiversity itself, this chapter will focus primarily on two different ways neurodiversity has been framed and defended by its proponents: I will call these the biodiversity framework and the identity framework. The biodiversity framework treats neurodiversity as an evolutionarily important component to the flourishing of our species, akin to the role biodiversity plays in an ecosystem. According to this framework, classifications of neurodivergent conditions as unhealthy or disordered simply miss their role in this larger evolutionary drama. The identity framework, alternatively, treats neurodiversity as a mere human variation akin to race, sex, or gender. On this framework, neurodivergent conditions mark either an essential feature of the neurodivergent individual’s identity or a mere difference from one’s neurotypical peers with respect to overall flourishing. The final section will explore the limits of neurodiversity as it pertains to certain open questions and challenges concerning its meaning and plausibility. In particular, I will examine the ways in which some neurodivergent conditions elicit (justifiably) paternalistic attitudes and how this arguably limits the scope of neurodiversity.

TH E AUTISM R I G H TS M OVEME NT A ND T H E OR IGIN OF “NE U R O D I V E R SI T Y” According to the most recent edition of the Diagnostic and Statistical Manual of Mental Disorders, the DSMV, autism spectrum disorder is characterized by the presence of difficulties with social communication/ reasoning and repetitive, stereotyped behaviors arising early in development. There is wide variation in levels of functioning across the spectrum, ranging from the inability to handle any aspects of self-care to individuals with complete functional independence. In some cases, intelligence testing has demonstrated intellectual advantages relative to more neurotypical scoring. However, the impairments in social communication/reasoning and repetitive behavior can remain a challenge across the autism spectrum.5 36 

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The concept of neurodiversity originated within the autism rights movement of the 1990s. At this time, the growing popularity of the Internet made it possible for autistic individuals from across the world to come together in what appeared to be virtual communities built around their members’ shared experience as atypical individuals in a neurotypical world.6 The advocacy movement that grew out of these communities initially focused on requesting greater attention be paid to the quality of life of autistic individuals (e.g., employment assistance, accommodations for greater independence) over the more traditional focus on cures or preventative/prenatal interventions.7 It’s perhaps now canon to trace the neurodiversity movement back to a speech given at one of the self-advocacy autism conferences, in Toronto in 1993: the self-advocate Jim Sinclair’s “Don’t Mourn for Us.”8 In this speech, Sinclair lays out a stark dichotomy between the way he feels parents view their children’s autism and the way that self-advocates like Sinclair himself view their condition. For Sinclair, autism isn’t something one has—it’s “a way of being.”9 In 1998, Judy Singer coined the term “neurodiversity” in her sociology research on the rise of online communities formed by high-functioning autistic individuals.10 Singer envisioned neurodiversity as capturing a new political identity. “I was dreaming of a grand new social movement for neurological marginalized groups,” Singer writes, “along the lines of the feminist, gay liberation or disability movements.”11 Partly thanks to Singer’s work, a primary aim of the neurodiversity movement is to advocate for the rights and interests of neurodivergent individuals as members of an oft-oppressed minority group.12 In addition to this political framework, defenders of neurodiversity also aim to de-pathologize autism, as well as many other neurological conditions presently classified as disorders, including dyslexia, attention deficit hyperactivity disorder, bipolar disorder, and schizophrenia.13 As will be discussed in the following, neurodiversity proponents are skeptical of functional accounts of health and disease that typically classify these conditions as inherently dysfunctional.

Instead, proponents favor accounts that view the disabling features of these conditions as due primarily to social causes (e.g., ableism, neurotypical prejudice, unnecessary barriers to access, lack of appropriate accommodations). The remainder of this chapter will focus on philosophical and conceptual issues concerning neurodiversity, specifically as it concerns its de-pathologizing aim. The arguments in this chapter should have no bearing at all on the merits of the political advocacy aim (or if they do, it’s not obvious, nor is it intended or desired). As far as this author is concerned, most arguments for why we should protect the interests of neurodivergent individuals can be sound even if some neurodivergent conditions are better framed in disorder language (at least for some individuals).

TH E CON CEPT O F NE U R O D I V E R S I T Y Despite the historical coinage of the concept, as well as the original intent of Singer herself, there is some dispute over what neurodiversity means or ought to mean.14 Many proponents have chosen to follow self-advocate Nick Walker on this, who distinguishes neurodiversity from what he calls the “neurodiversity paradigm.”15 On Walker’s rendition, the twopronged political/de-pathologizing view discussed earlier would be captured by his “neurodiversity paradigm” label. Walker offers this label to denote the idea that some neurodivergent conditions should not be viewed as unhealthy, dysfunctional, or in any important way disordered. But the term “neurodiversity” itself, according to Walker, should be reserved for the mere fact of naturally occurring variation in human neurological makeup (i.e., that no two brains are exactly alike). More simply: on Walker’s approach, “neurodiversity” refers to the existence of natural neurological variance, whereas “neurodiversity paradigm” refers to the claim that such differences are not bad, flawed, or broken. Walker’s definition of “neurodiversity” arguably involves some ambiguity over the term “natural”—a notoriously messy concept.16 Sometimes “natural” just means whatever isn’t man-made, or caused by

man, or otherwise artificial in some way. But this meaning is much too thin to capture variations relevant to neurodiversity. Since no one disputes the presence of some variation among all aspects of biological organisms more generally, the term “neurodiversity” must arguably denote something beyond this evolutionarily guaranteed variance. Another popular sense of “natural” is as a synonym for “good” or “pure,” or in some sense, morally or normatively neutral. But this connotation would clearly slip into Walker’s “neurodiversity paradigm” notion, presumably removing the need for a distinction in the first place. It may also beg the very question at issue: namely, whether neurological conditions like autism or dyslexia should be viewed as normatively neutral within psychiatry and the medical sciences more generally. Robert Chapman expresses skepticism about whether there can be a “final definition” of the concept of neurodiversity. On the one hand, Chapman concedes that neurodiversity is at least a challenge of sorts to the idea that typical human functioning should partly define what health is. On the other hand, Chapman worries that too rigid a definition might not be inclusive enough (e.g., Chapman is skeptical about the plausibility of Walker’s insistence that neurodiversity marks a natural variation. I will address this concern in the next section). Thus, Chapman thinks we should consider the concept of neurodiversity as a “moving target”; otherwise, we might risk harming others by a too restrictive (and thus unjustifiably exclusionary) account.17 I think this “moving target” suggestion is unhelpful. Presumably, part of why the topic of neurodiversity is receiving a chapter in the present bioethics handbook is precisely because of its rather radical challenge to traditional conceptions of health and mental functioning. At a minimum, neurodiversity must then be meaningfully distinguished from the more traditional approaches to neurodivergent conditions, which view such conditions as dysfunctional or in some other sense unhealthy. Neurodiversity (or Walker’s “neurodiversity paradigm”) should arguably express the view that at least some significant neurological differences are consistent with being physically and psychologically healthy. N e u r odive r sity 

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This commitment still leaves room for open discussion about which conditions fall within, or outside, the scope of neurodiversity. After all, neurodiversity proponents seem to agree that at least some neurological differences should remain pathologized (e.g., anencephaly).18 And while autism tends to be the paradigmatic case of neurodivergence within the literature, many proponents defend a neurodiversity reframing for arguably more controversial conditions like bipolar disorder and schizophrenia.19 Finally, as to Chapman’s concern about the possible negative sociological effects of pinning neurodiversity down, I think concerns about harm likely cut both ways. Classifying and diagnosing disorders arguably play a morally important role in the protection of some neurodivergent individuals (as will be discussed in the final section). Thus, for the remainder of this chapter, I will take neurodiversity to express the notion that some neurodivergent conditions can plausibly be framed as physically and psychologically healthy. In the next two sections, I will critically examine two different frameworks which proponents have traditionally employed in defense of neurodiversity: what I’m calling the biodiversity framework and the identity framework. But before moving on to this more critical examination, it’s worth emphasizing the seriousness of our topic. What positions we hold in this area of philosophy could have real-world effects on the lives of millions of individuals. And we have ample inductive evidence of our proneness to error: within the history of psychiatry, there are unfortunately numerous cautionary tales concerning the treatment of individuals deemed abnormal, disordered, or “insane.” We should thus tread carefully and always err on the side of the least harm to, and greatest respect for, everyone involved.

TH E BIODIVE R SI T Y F R AME WO R K The “neuro” in “neurodiversity” suggests the neuron, the object of study for neurologists or neuroscience. The image we get is of the building blocks of biological brains—neurons firing electric signals to each other in complex patterns, acting and reacting, and serving as 38 

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the chemical foundation of both our physiological processes (e.g., heart, lungs, bodily movements) and our cognitive processes (e.g., thoughts and experiences). Conceived of as a neurological condition, autism has been viewed in terms of how one’s brain is wired.20 In fact, some consider autism to be a paradigm case of a brain disorder.21 The idea then is that autism and other neurodivergent conditions are a product of one’s hardware (to employ the hardware/software analogy frequently raised in discussions about mental disorders versus brain disorders). So, on this line of thinking, when dealing with autism, you aren’t dealing with any mere behavior problems, mood disorders, or other less permanent, or presumably more malleable, states of mental health. Instead, you are faced with the biological essence of the individual: their neurology. The notion that neurodivergent conditions have deep, neurological underpinnings is what most clearly sets the neurodiversity movement apart from other anti-psychiatry movements. For instance, one of the primary motivations for Szaz’s skepticism about the existence of mental disorders was that such conditions do not appear to have any deep grounding in neurology or brain structure.22 For that reason, he argued that such conditions were better thought of as reflecting “problems of living”—nothing different in kind (even if in degree) from the problems that all people face. But if biological markers were present, such as some kind of tissue damage to the brain itself, Szaz argued that such conditions would then be better candidates for genuine mental disorders.23 Neurodiversity marks a different kind of anti-psychiatric movement by comparison, in that the reality of neurological differences is not being questioned. Instead, the challenge is to the normative status assigned to such differences: why label them disordered, diseased, unhealthy, or dysfunctional? In his article “The Myth of the Normal Brain: Embracing Neurodiversity,” Thomas Armstrong argues that the human brain has no prototypical standard by which all real human brains must be measured.24 Armstrong claims that, unlike the kilogram, where an actual piece of metal (stored to this day in France) serves as the worldwide reference for kilogram measurements, there’s no one brain to fix

the reference for “normal.” Without such a reference, Armstrong is skeptical that we can meaningfully classify neurological conditions as either “normal” or “pathological.” What sense would it make to say that this brain is properly ordered, but that one isn’t, if there’s no consensus on the ideal brain? At this point, one might point out that conditions like autism, attention-deficit disorder, and dyslexia all involve impairments in function or neurological deficits (i.e., deficiency in cognitive ability or functioning relative to the statistical norm). Neurotypical structures, on the other hand, lack those impairments and deficits. Isn’t this enough to mark neurotypical brains as ordered, normal, or healthy (and, by comparison, the impaired brains as disordered)? Proponents of neurodiversity don’t think so. Part of what’s motivating proponents like Armstrong here is that some neurological differences appear to bring with them strengths as well as weaknesses. Armstrong cites some of these strengths at length, including greater systemizing abilities among autistics, greater cohesion of disparate spatial information among dyslexics, and greater dispositions toward creativity among bipolar or ADHD individuals.25 So defining such conditions primarily in terms of their deficits or impairments, proponents argue, fails to give due consideration to these relative strengths. Moreover, proponents charge that giving priority to the strengths of neurotypical brains over these others reflects an unjustified bias toward the neurotypical brain structure.26 And here is where the biodiversity framework steps in. From this higher vantage point of the good of the species, Armstrong argues that traditional attempts to define the normal brain look obviously myopic; any traditional definition risks overlooking the role neurodivergence plays in the grand scheme of biological life: Embracing the concept of neurodiversity would bring the study of mental health disorders in line with movements that have already taken place over the past 50 years around biodiversity and cultural diversity. As Harvey Blume noted, “Neurodiversity may be every bit as crucial for the human

race as biodiversity is for life in general. Who can say what form of wiring will prove best at any given moment?” How absurd it would be to label a calla lily as having “petal deficit disorder” or to diagnose a person from Holland as suffering from “altitude deprivation syndrome.” There is no normal flower or culture. Similarly, we ought to accept the fact that there is no normal brain or mind.27 To critically evaluate Armstrong’s argument, as well as the biodiversity framework it assumes, I think it will be helpful to first set up his reasoning more formally: P1: A diversity of neurological conditions is beneficial to the flourishing of the human species (just as diversity in organisms is beneficial to an ecosystem as a whole). P2: If P1 is true, then the notion of a normal brain is absurd on its face—it can’t make any sense. C: Therefore, the notion of a normal brain is absurd—it can’t make any sense. Suppose P1 is true for the moment (I will come back to it later). P2 seems dubious, or at the very least, it seems to assume that the only relevant context for determining normal brain functioning must be from this higher vantage point. But it’s not obvious that this vantage point ought to be privileged in the context of psychological health. After all, we can conceive of possible neurological conditions that seem clearly pathological despite making some meaningful contribution to the collective. For instance, if a variation of obsessive-compulsive disorder (OCD) were to compel individuals to clean strangers’ houses for free, this obvious benefit to the rest of us needn’t be relevant to determining OCD’s disorder status. The worry then is that P2 may be a non-sequitur—it seems there can be meaningful ways of fixing “pathological” without ever needing to take on this vantage point of the species. Let’s now consider P1—is it true that neurological diversity is overall a benefit to humanity? Armstrong N e u r odive r sity 

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references the oft-cited quote from the self-advocate Temple Grandin: “Some guy with high-functioning Asperger’s developed the first stone spear; it wasn’t developed by the social ones yakking around the campfire.”28 The implication is pretty clear: humans wouldn’t likely have made such amazing technological advances—from the Stone Age all the way to the digital computer—if it weren’t for the presence of diverse brain structures (so thank goodness there were some autistic individuals who naturally found themselves more interested in systems and objects than social gatherings and relationships!). The suggestion that our circumstances would be different had we not had numerous autistic individuals sprinkled into the general population seems true enough. But one of the notorious problems with consequentialist rationales like this is that the justification turns entirely on how things actually turn out in the end. If instead it turns out that we end up eradicating all life on this planet through a Dr. Strangelove–style nuclear war, then perhaps some of our final thoughts might be to look back with nostalgia at those “social ones yakking around the campfire.” The point here is simply that defending the value of anything by way of its actual consequences can be a tricky business.29 Nevertheless, as we discovered with P2, the larger concern for this argument is that taking on this “for the greater good” perspective just changes the subject. Instead of discussing how best to frame individual mental health and illness, we’ve moved to discussing group survival and the role behavior affects the group or species. Part of the slippage here may be in the biodiversity analogy itself. When we think about the importance of biodiversity to an ecosystem, we don’t typically think about the well-being of any individual in that ecosystem. Instead, the focus is on how diverse strategies and processes can help sustain life in general in the face of unpredictability. And there’s typically nothing untoward about this when discussing trees or bees or fleas. But for humans, the health of the individual matters regardless of what role that individual’s behavior plays (or could play) in the overall health or resilience of some larger system. At the very least, there are reasons to retain what we’re calling the disorder role even if everything proponents like Armstrong say 40 

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about this higher vantage point is correct. Thus, this move to the biodiversity framework won’t be enough to eliminate the need for the disorder role. Moreover, as some proponents have noted, focusing on the societal contributions of neurodivergent individuals can border on being antithetical to the movement when it inadvertently draws attention away from viewing such conditions as having value in themselves.30 But this raises a more general question about the concept of neurodiversity: is it meant to be capturing our folk concepts of mental health and disorder, or is it meant to be offering a revision to those concepts? The former project is sometimes called conservative, in that it tries to conserve our basic conceptions when working out the nature of health and disorder. The latter project is called revisionist, in that its aim is to offer new conceptions of health and disorder beyond our previous conceptions of those states.31 On the biodiversity framework, neurodiversity seems to contain strands of both conservativism and revisionism. The conservative side lies in its embracing the notion of natural function; the revisionist side lies in its defining such function with respect to the overall flourishing of the species in place of individual lives themselves. Along revisionist lines, proponents of this biodiversity framework might simply insist that notions of function/dysfunction or cognitive pathology be tied to certain evolutionarily informed evaluations of a condition’s role in this larger species-level drama. But determining whether it’s better to frame health in species-level terms, as opposed to at the level of the individual, will likely involve evaluating trade-offs of each option. One clear benefit of the biodiversity framework may be to remove stigma regarding some neurological differences, assuming such conditions can plausibly be framed as naturally functional from a species-level vantage point. But as we’ve already seen, a clear cost of this move would be to lose the sense in which concerns about health are tied to an individual’s body and mind. In particular, individual-level health assessments arguably play an important role in how we think we should treat each other (I will explore this worry in more detail in the final section of the chapter).

Finally, it’s worth taking some time to evaluate a deeper assumption at the heart of the biodiversity framework: the notion that it’s simply human hubris or nonsense to think that any natural variation could be disordered, unhealthy, or in some way bad. The contention seems to be this: if autism, for example, is a naturally occurring condition, as opposed to being due to environmental toxins, genetic diseases, prenatal trauma, or any other non-natural interference with human neurodevelopment, we should not view autism as a disorder. As of this writing, there is no consensus on the underlying cause(s) of autism.32 While there is some clear evidence of a role for genetics in a significant portion of this population, there remains open empirical questions about what other factors may be in play.33 There is, however, a clear consensus among scientists and medical professionals over what does not cause autism (e.g., vaccines don’t cause autism).34 At any rate, there remains a split within the broader community of autism advocates and parents of autistic children over the exact origins of autism. Yet it’s worth pausing here for a moment and asking: what difference would it make to autism’s disorder status whether the condition reflected natural variation or not? At least since Darwin, we’ve known that natural variation in any individual’s physical and mental design is not only to be expected—it’s predicted by our best account of our origins.35 But that hasn’t undermined our intuition that some of these variations amount to physical or mobility impairments—so why need it undermine similar intuitions regarding variations concerning our mental functioning? And even some autistic self-advocates argue that the discovery of non-natural causes of autism shouldn’t undermine one’s neurodiversity status.36 Thus, determining whether a condition should count as healthy or unhealthy doesn’t likely turn on whether the condition’s cause is natural or unnatural.

TH E IDEN TIT Y F R AME WO R K Another way of framing neurodiversity is through the lens of identity. Autism self-advocates will sometimes

describe themselves as being “wired this way” or “born this way.”37 On this approach, diversity with respect to brain function should be treated no differently than diversity concerning biological sex, race, or gender. And just as it would be morally dubious to search for a cure for “having whiteness” or “suffering from homosexuality,” so too have neurodiversity proponents argued against cures and some forms of therapies for neurodivergent conditions. One version of this identity framework is expressed in the metaphysical assertion that neurodivergent conditions are essential properties of the bearers of those conditions, such that to remove or alter the condition would in effect destroy the original person. Jim Sinclair lays out this framework quite starkly in the now canonical 1993 speech, “Don’t Mourn for Us”: Autism isn’t something a person has, or a “shell” that a person is trapped inside. There’s no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person—and if it were possible, the person you’d have left would not be the same person you started with.38 Sinclair appears to be expressing the view that autism serves as an essential property of the autistic person. In “A Dash of Autism,” the philosopher Jami Anderson seems to defend at least some qualified form of this essentialist view: The first foundational claim is that autism is an essential feature of the person, not a contingent feature. Moreover, essential features should be respected much in the way we treat other essential features of persons, like their race identity or sex or sexual identity: with respect. Having a disease such as multiple sclerosis or a condition such as asthma would be, according to Sinclair, a contingent, N e u r odive r sity 

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nonessential feature of a person. Therefore, were a person to be cured of multiple sclerosis or asthma, their essential nature, that is who they are as a person, would not be changed. However, unlike asthma or multiple sclerosis, autism is an identity and thus to cure autism (were that even remotely possible) would be to alter the identity of the person.39 Despite the insistence of proponents like Sinclair and Anderson, the move from neurological condition to neurodivergent identity seems metaphysically suspect. William Simkulet sums up the fatal flaw quite clearly: The primary problem with Sinclair’s position is that it rests upon the assumption that we are who we are because of our composite neurology—rob us of a piece of what makes us tick, and you have a different watch. But this is a mistake—our commonsense intuition is that we were the same people we were as kids, even though we have grown up, changed our priorities and adopted both radically different beliefs and radically different ways of viewing the world than we had as children.40 As Simkulet points out, our neurology is constantly changing, presumably with every new thing we learn and new experience we have. Yet we intuitively remain the same individual after such experiences as we were before them. So, one’s identity cannot be simply read off one’s neurology, nor does one’s existence get erased merely due to change in that neurology.41 However, perhaps the identity framework could still be maintained insofar as we have most reason to treat neurodivergent conditions in the same manner as we treat one’s sex, race, or gender. And proponents of neurodiversity have defended just such an approach by way of an analogy to homosexuality’s evolving status within the history of psychiatry. In the first edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM), homosexuality was 42 

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initially classified in pathological terms as a kind of sexual deviation, along with “transvestism, pedophilia, fetishism, and sexual sadism.”42 By the second edition, the diagnosis was changed to “sexual orientation disturbance” or SOD, where homosexuality (and heterosexuality!) was considered an illness only when the individual in question found their sexual orientation distressing.43 The third edition replaced SOD with “ego-dynastic homosexuality” or EDH, but by the fourth edition, the term “homosexuality” was dropped entirely from the manual.44 Part of the explanation for why homosexuality was eventually removed from the DSM was the growing recognition that any disabling feature of homosexuality was primarily due to prejudice and bias, as opposed to anything inherently dysfunctional, distressful, or otherwise pathological about the disposition or condition itself.45 Once one controlled for these external factors, it became clear that homosexual individuals could flourish to no lesser degree than their heterosexual counterparts. The evolution of homosexuality’s status across the history of the DSM has inspired an argument by analogy within the neurodiversity movement. Just as homosexual individuals can struggle to function in societies where heterosexual biases and prejudices pervade their social world, neurodivergent individuals also face a similar struggle in societies where neurotypical expectations are the norm. And if what’s disabling about neurodivergent conditions is primarily the surrounding neurotypical environment (i.e., social expectations, lack of accommodations, and other neurotypical biases and prejudices), then proponents argue that the same rationale for de-pathologizing homosexuality should also apply to neurodivergent conditions, like autism.46 At this point though, a reader might insist that there is a glaring disanalogy between homosexuality, on the one hand, and conditions like autism and schizophrenia on the other: the latter conditions are inherently disabling, whereas the former is not (for the purposes of this chapter, I will be treating “disabling,” “disability,” and “disorder” as synonymous). But what does it mean to claim that a condition is “inherently disabling”?

One way to define “inherently disabling” is through what’s been dubbed the medical approach to health and disorder: something has gone wrong with some internal state of the individual. Once we figure out the proper function of that state, we can then identify the dysfunction. For instance, Christopher Boorse defines health in terms of being “free from disease,” where “disease” is defined in terms of “an internal state” that depresses “functional ability below species-typical levels.”47 Jerome Wakefield offers another functional account, which he calls the harmful dysfunction analysis, where dysfunction is defined relative to some evolutionarily designed purpose, but the dysfunction must also be judged as harmful within the wider social context.48 Neurodiversity proponents charge that any appeal to “natural function” will likely be question-begging in the context of evaluating neurodivergent conditions. As we’ve already seen, the dispute isn’t over whether autism really exists (à la Szaz-style skepticism), nor is it over whether autism is or isn’t a naturally occurring condition (as with debates over whether there are environmental or otherwise epigenetic causal factors of autism). Neurodiversity is essentially a challenge to traditional ways of determining neurological dysfunction. Proponents of neurodiversity are skeptical that medical model defenders can provide independent, non-question-begging reasons for their accounts of proper functioning. As Chapman writes, “It is not clear whether we can have an objective, value-free account of dysfunction as applied to the mind that is not at risk of undue pathologisation of minority.”49 Whether this skepticism is warranted, however, will not be addressed in this chapter.50 In place of this medical approach, neurodiversity proponents typically defend some form of what’s called the social model of disability, where the focus of discussion is moved away from questions about proper functioning and toward questions about the social factors contributing to (or constitutive of) the harmfulness of such impairments. On this approach, what makes a condition or impairment disabling is not something intrinsic or internal to the condition itself, but rather the presence of certain external factors, like ableist barriers, prejudice, biases, and lack of meaningful

accommodations. Consider the following mobility impairment: the inability to walk up and down stairs. If the individual’s surrounding environment lacks stair-alternatives, then this condition would indeed be disabling. But if the environment is one where stair-alternatives are ubiquitous (e.g., ramps, elevators, escalators), then according to a simple version of the social model, the mobility impairment is no longer disabling. And so too for any impairment: the contention is that what makes an impairment disabling for the individual is just these social factors—not something inherent or intrinsic to the condition itself. While many neurodiversity proponents adopt some version of the social model of disability, some have recently begun to question its helpfulness to the movement. Chapman claims that social models implicitly assume some version of the medical approach whenever they admit the existence of “impairments”—a term he says is presumably synonymous with dysfunction.51 But the talk of natural impairments seems inconsistent with neurodiversity, Chapman argues, since neurodiversity concerns establishing this broader neurological spectrum as the new standard of health and function—the new normal. Finding little or complicated support from both the medical and social approaches to disability, some neurodiversity proponents have recently looked to a relatively new approach called the “mere-difference” model or “value-neutral” approach.52 The “meredifference” account draws on Elizabeth Barnes’ research concerning physical or otherwise noncognitive disabilities.53 As a variation of the social model, the “mere-difference” approach sets questions of natural function or impairments to one side, opting instead to evaluate the individual’s wellbeing overall. Instead of denying that such conditions can be disabling in some contexts, Barnes suggests that we simply average the disvalue of disabling contexts with the value of non-disabling (and enabling) ones. When we do this, Barnes argues, we should find that, for many common disabilities, the impairment in question makes no significant difference to one’s well-being overall. So (Barnes argues), disability can be a mere difference, along the same lines as sex, race, or gender differences.54 N e u r odive r sity 

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Setting aside questions about the plausibility of the mere-difference model,55 Barnes herself raises caveats about applying it directly to cognitive and psychological conditions. While she thinks her account can be successfully applied to conditions like autism and Down syndrome, she cautions that certain differences between physical disabilities, on the one hand, versus psychological and cognitive disabilities, on the other, will prevent any straightforward application of her mere-difference approach.56 Barnes explains that her primary motivation for the mere-difference account of physical disabilities relies heavily on first-person testimony regarding one’s own well-being and flourishing. But for some psychological disabilities, this approach is complicated in part by “the way in which many psychological disabilities are intimately connected to understanding, interpretation, and rationality.”57 As an illustration of this point, Barnes goes on to offer the case of self-affirmational attitudes toward one’s own eating disorder: It’s not uncommon for people with eating disorders such as anorexia to deny that there is anything pathological or harmful about their behavior, and to insist that their behavior is healthy and promotes good quality of life. Again, we don’t—and shouldn’t—take these reports at face value, precisely because of the ways in which an eating disorder can distort thought patterns.58 It is this concern about a condition’s thought-affecting properties that seems to be grounding Barnes’ hesitance here. But this property seems to arise for some neurodiversity candidates, one of which Barnes also discusses: Similarly, people who experience paranoid delusions as a result of schizophrenia are often very reluctant to accept treatment, in part because they believe that such delusions are valuable, giving them insight into the real truth that others (doctors, friends, etc.) are trying to obscure. And again, this belief 44 

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is part of the condition itself—it’s part of the way in which paranoia manifests.59 Schizophrenia and anorexia nervosa notwithstanding, Barnes herself doesn’t raise this thought-affecting concern for other neurological conditions. Furthermore, she explicitly states that she thinks her account can be more straightforwardly applied to individuals on the autism spectrum and to individuals with Down syndrome. Even so, I suspect that this “thought-affecting” feature reveals a deeper problem for the neurodiversity approach, a worry which will be examined in more depth in the next section.

T H E L I M I TS O F N E U R O DI V E R S I T Y Criticism of neurodiversity generally takes the form of trying to show how the neurodiversity approach problematically ignores the existence of real suffering and hardships inherent to the conditions in question (i.e., suffering and hardships that would survive any feasible alterations to our social world). For instance, Pier Jaarsma and Stellan Welin argue that a neurodiversity approach to autism, while arguably defensible for higher-functioning autistic individuals, couldn’t plausibly hold for those inhabiting the lower-functioning part of the spectrum.60 Deborah Barnbaum argues that autism’s impairments in social reasoning must inevitably impact the degree to which autistic individuals can meaningfully relate to others (including oneself), thus affecting their capacity for genuinely reciprocal relationships.61 Jonathan Hughes argues that the heterogeneity of the autism spectrum, in both its likely multi-faceted neurological causes and its behavioral manifestations, undermines the claim that autism isn’t intrinsically disabling.62 Ryan Nelson argues that the political aims of the neurodiversity movement shouldn’t turn on whether or not certain neurodivergent conditions are better understood as disorders, particularly if the most popular defenses of this de-pathologizing goal are likely unsound (and he argues that they are).63 In response, some neurodiversity proponents charge that such criticisms are essentially question-

begging, insofar as neurodiversity is meant to challenge neurotypical conceptions of functioning, the good life, and flourishing. Broadly speaking, the dialectic between neurodiversity proponents and critics has been something like the following. Critics charge that some neurodivergent conditions are intrinsically harmful or dysfunctional, and then proponents reply that such charges stem from one or more of the following: (a) ableist or neurotypical prejudice/bias, or (b) a mere desire that neurodivergent individuals conform to what’s “normal,” or (c) a failure to imagine a more universal design of our social structures, which would effectively remove the disabling or otherwise harmful features, or (d) a failure to appreciate what it’s like to be a neurodivergent individual,64 or (e) mistaking the harm or dysfunction of a co-morbidity for the neurodivergent condition in question.65 And perhaps not coincidently, an identical kind of exchange seems to occur between defenders and critics of the mere-difference approach to physical, non-cognitive disability.66 However, as we saw in the previous section, Barnes herself is hesitant to apply her mere-difference approach to all cognitive and psychological disabilities (including some conditions alleged to be within neurodiversity’s purview). Examining Barnes’ reasons for her hesitancy reveals a difficulty for neurodiversity more broadly, one that arguably sidesteps the standard dialectic in debates over the merits and scope of neurodiversity. To recall: Barnes thinks it’s a mistake to simply extend her mere-difference view to anorexics and schizophrenics because these conditions—unlike non-cognitive impairments—are known to distort thinking. Such thought distortions undermine the person’s first-person testimony regarding the value of their own condition. But it’s worth pausing here to ask: why couldn’t neurodiversity proponents simply reply with one of the question-begging concerns (a)– (e) previously listed? Couldn’t a proponent claim that Barnes’ notion of distorted thinking is itself riddled with neurotypical bias? For instance, is it possible

that at least some anorexics sincerely endorse a thinner body, come what may?67 Now to be absolutely clear: this previous question should not be read as suggesting (or even remotely implying) that any reallife people who have anorexia nervosa actually do place the goal of an increasingly thinner body above anything else in their life (including the duration of life itself).68 The challenge here is purely conceptual: can conditions like anorexia and schizophrenia fall outside neurodiversity’s scope without running afoul of the question-begging pitfalls outlined previously in (a)–(e)? I offer the following way: taking a more paternalistic attitude toward the anorexic and schizophrenic is simply the safer moral choice. If we have reasonable evidence that the individual’s thinking and preferences have been problematically influenced by their mental condition, then our moral obligation in such a case seems to switch from respecting their autonomy to protecting their interests given the distorting influence of their condition. When faced with cases like this, morality seems to require that we navigate a difficult passage between two shores of moral error. On one side is the error of paternalistic overreach, where we are not sufficiently respecting the individual’s autonomy. But on the other side is the error of reckless deference, where deferring to autonomy would unjustifiably place the individual’s interests at unnecessary risk. Consider the anorexic again: when confronted with an individual who espouses a kind of “anorexic pride,” we first find ourselves facing a difficult epistemic choice: do we have most reason to think that this self-affirmation stems from distorted thinking brought on by the eating disorder itself? To reiterate my caveat from this discussion, we absolutely do have most reason to think this for any real-life sufferers of this disorder. But for the sake of conceptual clarity, if we supposed that our evidence was inconclusive on this point, we may then be faced with a more difficult moral choice: should we steer closer to the paternalistic overreach shore or to the reckless deference shore? In line with Barnes’ concern here, I think we should risk paternalistic overreach by discounting the anorexic’s stated preferences concerning anorexia; the current evidence about the disorder N e u r odive r sity 

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and its effects on the anorexic’s thought process makes this the safer moral choice. But how might this raise a problem for neurodiversity? After all, most neurodiversity proponents don’t call for anorexia nervosa to be de-pathologized. However, some proponents do consider schizophrenia to be a mere neurodivergent condition, functionally analogous to sex, race, and gender (even if only in an ideal, pro-neurodivergent world).69 Yet if we should sometimes take a more paternalistic attitude toward schizophrenics given the distorting influence of their condition on their thinking, then it arguably follows that proponents cannot in good faith treat schizophrenia as a mere difference—at least not for the individual in question. Note that what’s doing the work here isn’t the mere presence of the thought-distorting feature. The problem for the neurodiversity approach arises out of our having to take this paternalistic attitude toward the individual. When we do this, we are essentially giving priority to their condition’s influence on their speech and behavior over and above the individual’s own reasoning and self-determination. For any other identity-marker, like race or sex, such paternalism would be obviously immoral: so the fact that morality seems to require paternalism in these cases puts pressure on the notion that such conditions are better understood as mere identities. And even if non-Western conceptualizations of some neurodivergent experiences might remove some of the hardships associated with the condition (as some proponents argue concerning schizophrenia),70 it arguably wouldn’t remove the moral necessity of having to take this paternalistic attitude in some contexts. Now if this issue could be isolated to just schizophrenia and anorexia, then perhaps it wouldn’t be too threatening to the neurodiversity project. After all, isn’t autism the paradigmatic case of neurodivergence? Yet, as of the time of this writing, our best evidence suggests that this issue arises for at least some individuals on the autism spectrum too.71 Perhaps the clearest evidence that autism isn’t free of such a worry is its role in mitigating legal responsibility for criminal behavior.72 While autistics are not known to commit crimes at a higher rate than 46 

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the general population, there is some evidence that certain kinds of criminal activity are significantly correlated with an autism diagnosis.73 To be sure, much of this can be explained by the inevitable misunderstandings that arise when individuals with social reasoning impairments attempt to innocently navigate a social world awash with subtle and, in many cases, non-verbal cues.74 In such cases, the best explanation for the criminal behavior is arguably that the autistic individual simply missed some important social cues related to the unlawful act. In effect, such behavior would be no more difficult to explain than a blind person inadvertently trespassing because they didn’t see the “no trespassing” sign.75 But there are also cases of unlawful behavior from autistic individuals that seem more difficult to explain. To take only one example, consider the case we can call Arson:76 Arson: KA is preoccupied with a single radio station which he listens to every day. But when his family moves to a new place, his favorite radio station doesn’t come in as clearly. KA creates a way to better focus the radio station’s signal from his new place, allowing him once again to listen to this station. A year later, a religious radio station in the area begins broadcasting on a frequency close to his station’s, causing interference with its signal between 7pm and 10pm each day. KA writes multiple letters to this religious station requesting that they stop interfering with the broadcast of his favorite station, only to receive “blessings and Christian tracks in response.” Faced with their refusal to stop broadcasting, KA walks to the station with gasoline and ultimately burns their radio transmitter to the ground. KA was charged and convicted of arson, but he was not sentenced to imprisonment.77 KA was spared a prison sentence because of his autism diagnosis (his diagnosis was Asperger’s Syndrome, but this case occurred prior to the DSM-V collapsing AS into the current ASD classification—if

diagnosed today, his diagnosis would likely be level 1 ASD). Part of the rationale for this legal mitigation was KA’s apparent inability to recognize that his behavior was in any meaningful way inappropriate. KA “proudly informed his mother the next morning that he was responsible for the destroyed radio transmitter,” also claiming that he “had no regrets for his actions” and “was puzzled what all the fuss was about.”78 It’s important to note that KA’s assessment of his own behavior appears to be quite common among other autistic defendants. As the researchers Nachum Katz and Zvi Zemishlany explain: When people with AS are charged with offenses they are quick to confess since they do not feel any guilt and are convinced that their actions were suitable to the situation. In addition they are very honest and true people and they are not aware of the social and legal implications of their confession.79 It’s difficult to see how an impairment in reading social cues on its own could satisfactorily explain KA’s burning down a radio transmitter. Moreover, it’s unclear how such an impairment could explain this general autistic tendency toward quick confessions and being “convinced that their actions were suitable to the situation.” The earlier analogy to a blind person missing a “no trespassing” sign doesn’t seem to capture these features. Also note that the controversy over high/low-functioning labels plays no role here—KA would likely be viewed as a high-functioning autistic individual today.80 Of course, a neurodiversity proponent might argue that the courts simply got it wrong: KA’s autism diagnosis should not have played a mitigating factor in his legal responsibility or sentencing. One might insist that KA actually deserves a prison sentence, no less than what his neurotypical counterpart would have received. While I admit that this move is likely necessary to fend off my worries about the appropriateness of the paternalistic attitude in KA’s case, I’m afraid this isn’t a good enough reason to adopt it. Given the current evidence, it seems morally risky to treat individuals

like KA as we would any other neurotypical offender. This moral reservation arguably applies to other cases that share enough similarities with Arson: we would be taking a serious moral risk in choosing to treat these individuals as we would neurotypicals, given their unique circumstances and, most importantly, what our current evidence can support about what best explains their illicit behavior. So, I think the most plausible thing to say here is that KA’s autism did indeed influence his thought process in a way that better explains his behavior (both the criminal act and his unrepentance) than any other explanation that doesn’t cite his autism. Thus, given the evidence available about KA’s situation and our current understanding of autism, the safest choice here is to risk erring on the paternalistic side of our moral obligations. Now to be absolutely clear: I am not saying that autism always excuses any immoral or illegal behavior! I’m not even saying that autism usually, or even in a sizable minority of cases, should underwrite the mitigation of either moral or legal responsibility. Each case is different. What I am saying is that the need to take a paternalistic stance toward an individual like KA undermines that individual’s claim to mere-difference/identity status for their autism. And while it’s arguably morally necessary, it also is inherently exclusionary, separating this person’s condition from other mere-difference identities. Neither one’s sex, race, gender, nor even physical (non-cognitive) impairment could ever (justifiably) play this exceptional role. It is also this exceptional role that complicates the popular argument by analogy to homosexuality for removing autism from official classifications of disorders. Homosexuality cannot ground any degree of mitigation of responsibility for illegal or otherwise illicit behavior—the fact that autism can, then, is arguably a relevant, non-question-begging difference between the two conditions. This would also mark a clear difference from our hypothetical sleep/wake-divergent condition described at the beginning of this chapter. We have now reached at least one limit to neurodiversity’s scope: to be treated exactly as we would treat other mere-difference identities, a neurological N e u r odive r sity 

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condition cannot morally require paternalistic behavior toward the neurodivergent individual in question. In this way, neurodiversity may share the same general challenge raised for all constructivist positions concerning health and disease—the challenge of how to make a principled distinction between medical and non-medical ways of disvaluing. As the philosopher Dominic Murphy explains: The chief problem for constructivism is that we routinely make a distinction between the sick and the deviant, or between pathological conditions and those that we just disapprove of. Our disease concepts cannot just be a matter of disvaluing certain people or their properties. It must involve a reason for disvaluing them in a medical way rather than some other way.81 While neurodiversity aims to critique traditional ways of distinguishing pathology from mere disapproval, this doesn’t mean that it can remove this distinction entirely. Moreover, perhaps the preoccupation with questioning the merits of any thoroughly normative-free accounts of health and disorder may have caused neurodiversity proponents to overlook the possibility that normative-laden accounts might provide plausible grounds for classifying some neurological conditions as disordered. For instance, the philosopher Craig Edwards argues that the social function of labeling someone as having a mental illness just is to express something like the paternalistic attitude I’ve been examining: To diagnose someone as mentally ill is to declare that the person is entitled to adopt the sick role and that we should respond as though the person is a passive victim of the condition.82 In this light, one could argue that simply removing some neurodivergent conditions from the DSM may not necessarily alter their “sick role” status within society. If the “sick role” must remain out of moral necessity, then the condition in question will 48 

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presumably continue to play the disorder role as well—at least for those individuals—regardless of what label we give it. But as I cautioned at the beginning of this chapter, the political interests of such individuals should be unaltered by any of these considerations. Their interests in living more accepting, more fulfilling, less stigmatizing lives ought to be guaranteed by the same reasons anyone else’s interests are so guaranteed: we are all moral patients, and we all have an interest in living more accepting, more fulfilling, less stigmatizing lives.

CO N C LU S I O N In this chapter, we’ve examined the beginning of the neurodiversity movement, the concept of neurodiversity itself, and two popular ways of framing the neurodiversity approach to neurodivergent conditions (the biodiversity framework and the identity framework). Finally, we’ve examined some possible limits to the scope and plausibility of the neurodiversity approach. Specifically, we’ve considered how a condition’s eliciting a morally justified, paternalistic attitude may complicate the neurodiversity approach for some neurodivergent individuals.

N OT E S 1. As it turns out, some individuals can indeed thrive on just five hours of sleep! Francie Diep, “Can Genetics Explain Why Some People Thrive on Less Sleep?,” The New York Times, September 9, 2019, https://www.nytimes. com/2019/08/30/science/sleep-gene.html. 2. Sleep deprivation can have some serious consequences. “The Effects of Sleep Deprivation,” Johns Hopkins Medicine, accessed October 11, 2021, https://www.hopkinsmedicine.org/health/wellness-and-prevention/theeffects-of-sleep-deprivation. 3. There is already a diversity movement concerning the time of day one sleeps called chronotype diversity. Alex Williams, “Maybe Your Sleep Problem Isn’t a Problem,” August 25, 2018, https://www.nytimes.com/2018/08/25/ style/sleep-problem-late-night.html. 4.  In this chapter, I will follow the requests of self-advocates to use condition-first language (e.g., autistic, dyslexic,

schizophrenic), but I do not intended this language to be hurtful or harmful to those readers who prefer person-first language. 5.  American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders, 5th ed. (2013), https:// doi.org/10.1176/appi.books.9780890425596. 6.  See S. Silberman, Neurotribes: The Legacy of Autism and the Future of Neurodiversity (New York: Penguin Random House, 2015); J. Singer, Neurodiversity: The Birth of an Idea (Amazon Digital: Judy Singer, 2016); D. Blume, “Neurodiversity,” The Atlantic, September 30, 1998, https://www .theatlantic.com/magazine/archive/1998/09/neurodiver sity/305909/. 7.  J. Donvan and C. Zucker, In a Different Key: The Story of Autism (New York: Crown Publishers, 2016). 8.  J. Sinclair, “Don’t Mourn for Us,” Our Voice—Autism Network International Newsletter, 1993. 9. Ibid. 10. Singer, Neurodiversity. The term was then popularized that same year in Blume, “Neurodiversity.” 11. Ibid. 12.  Donvan and Zucker, In a Different Key; Silberman, Neurotribes. The goal is to restructure society in ways that will help these individuals live meaningful, flourishing lives as equally valuable members of society. In the case of autism, proponents have criticized the myopic focus on finding treatments or genetic markers for autism, instead arguing that more research and funding should go to helping address the daily and lifelong challenges faced by autistic individuals. Proponents also argue that more should be done to address the needs of autistic adults, like helping them find and sustain meaningful employment. For instance, Romoser explains that one of the biggest barriers is the traditional interview process, given its primary focus on the kinds of social skills that many autistic individuals lack—see Romoser, M. “Malemployment in Autism,” Focus on Autism and Other Developmental Disabilities 15 (2000): 246–47. 13. A. Fenton and T. Krahn, “Autism, Neurodiversity and Equality beyond the ‘Normal,’” Journal of Ethics in Mental Health 2 (2007): 1–6; P. Jaarsma and S. Welin, “Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement,” Health Care Analysis 20 (2012): 20–30; Jonathan A. Hughes, “Does the Heterogeneity of Autism Undermine the Neurodiversity Paradigm?” Bioethics 35, no. 1 (January 2021): 47–60, DOI.org (Crossref), https://doi.org/10.1111/bioe.12780; Simon Baron-Cohen, “Editorial Perspective: Neurodiversity—A Revolutionary Concept for Autism and Psychiatry,” Journal of Child Psychology and Psychiatry 58, no. 6 (June 2017): 744–47, DOI.org (Crossref), https://doi.org/10.1111/jcpp.12703; Chong-Ming Lim, “Accommodating Autistics and Treating Autism: Can We Have Both?,” Bioethics—Wiley Online Library, February 7, 2015, https://onlinelibrary.wiley.com /doi/epdf/10.1111/bioe.12154; T. Armstrong, “The Myth

of the Normal Brain: Embracing Neurodiversity,” AMA Journal of Ethics 17 (2015): 348–52. 14.  Robert Chapman, “Defining Neurodiversity for Research and Practice,” in Neurodiversity Studies: A New Critical Paradigm, 218–20; Jonathan A. Hughes, “Does the Heterogeneity of Autism Undermine the Neurodiversity Paradigm?,” Bioethics 35, no. 1 (January 2021): 47–60, DOI. org (Crossref), https://doi.org/10.1111/bioe.12780. 15. N. Walker, “Neurodiversity: Some Basic Terms & Definitions,” Neurocosmopolitanism, http://neurocosmopol itanism.com/neurodiversity-some-basic-terms-definitions/. 16. See Hughes, “Does the Heterogeneity of Autism Undermine the Neurodiversity Paradigm?,” 51–52, for a discussion on this point as it relates to neurodiversity. 17.  Chapman, “Defining Neurodiversity.” 18.  See pp. 376–77 in Robert Chapman, “Neurodiversity Theory and Its Discontents: Autism, Schizophrenia, and the Social Model of Disability,” in The Bloomsbury Companion to Philosophy of Psychiatry (2019), 371–89. 19.  Ibid., 379. 20.  Harvey Blume, “‘Autism & the Internet’ or ‘It’s the Wiring, Stupid,’” MIT Communications Forum (1997), http:// web.mit.edu/comm-forum/legacy/papers/blume.html. 21.  George Graham, The Disordered Mind, 3rd ed. (New York: Routledge, 2021), 58. 22.  Dominic Murphy, “Concepts of Disease and Health,” The Stanford Encyclopedia of Philosophy, ed. Edward N. Zalta (Spring 2021 Edition), https://plato.stanford.edu /archives/spr2021/entries/health-disease/. 23. Ibid. 24.  Armstrong, “The Myth of the Normal Brain.” 25.  Ibid., 348–49. 26.  It’s not clear whether a condition must have some relative strengths in some domains for the condition to be understood in neurodiverse terms, but the presence of such strengths appears to be at least part of the initial motivations for developing and defending the view. For examples of proponents offering or defending this biodiversity framework, see Armstrong, “The Myth of the Normal Brain”; Silberman, Neurotribes; Walker, “Neurodiversity”; Chapman, “Neurodiversity Theory,” J. L. Anderson, “A Dash of Autism,” in The Philosophy of Autism, eds. J. Anderson and S. Cushing (Lanham: Rowman & Littlefield Publishers), 109–42. 27.  Armstrong, “The Myth of the Normal Brain,” 349–50. 28.  Quoted in Armstrong, “The Myth of the Normal Brain,” 349. 29.  Hughes, “Does the Heterogeneity of Autism Undermine the Neurodiversity Paradigm?,” 51, raises a further problem with the arguably fallacious move from (a) admitting that some degree of diversity is necessary for a system’s flourishing to (b) all instances of diversity are so necessary, or even to (c) the increase in diversity is clearly better than not. 30.  Chapman, “Neurodiversity Theory.” N e u r odive r sity 

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31.  Murphy, “Concepts of Disease.” 32.  NIH, “What Causes Autism?,” https://www.nichd .nih.gov/health/topics/autism/conditioninfo/causes. 33. Ibid. 34.  NIH, “Other Autism FAQS,” https://www.nichd.nih .gov/health/topics/autism/more_information/other-faqs. 35.  Hughes, “Does the Heterogeneity of Autism Undermine the Neurodiversity Paradigm?,” 52. 36.  Robert Chapman, “The Unselected,” https://critical neurodiversity.com/2021/07/22/the-unselected/. 37.  Sinclair, “Don’t Mourn for Us”; Anderson, “A Dash of Autism”; Donvan and Zucker, In a Different Key; Silberman, Neurotribes. 38.  Sinclair, “Don’t Mourn for Us.” 39.  Anderson, “A Dash of Autism,” 122. 40. William Simkulet, “Neurodiversity and Personhood,” in Ethics & Neurodiversity, eds. C. D. Herrera and Alexandra Perry (Newcastle upon Tyne, UK: Cambridge Scholars Publishing, 2013), 215. 41.  Also see Hughes, “Does the Heterogeneity of Autism Undermine the Neurodiversity Paradigm?,” 58–59, for this concern and other concerns about this move to make neurodivergent conditions an essential property of their bearers. 42.  DSM-1. 43. Jack Drescher, “Out of DSM: Depathologizing Homosexuality,” Behavioral Sciences 5, no. 4 (2015): 565–75, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC46957 79/, accessed October 12, 2021. 44.  DSM-3; DSM-4. 45.  Drescher, “Out of DSM.” 46.  Andrew Solomon, “The Autism Rights Movement,” New York Magazine, 2008, https://nymag.com/news/fea tures/47225/; Jaarsma and Welin, “Autism as a Natural Human Variation”; Nick Walker, “The Neurodiversity Paradigm and the Path of Self-Liberation,” Conference presentation at the California Institute of Integral Studies, 2015. 47.  C. Boorse, “Health as a Theoretical Concept,” Philosophy of Science 44 (1977): 542–73. 48.  Jerome C. Wakefield, “The Concept of Mental Disorder: Diagnostic Implications of the Harmful Dysfunction Analysis,” World Psychiatry 6, no. 3 (2007): 149–56. 49.  Chapman, “Neurodiversity Theory,” 61. 50.  See Murphy, “Concepts of Disease,” for a survey of the broader dispute between naturalists and constructivists concerning health and disease. For an often-cited critique of functionalist accounts, see R. Amundson, “Against Normal Function,” Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences 31 (2000): 33–53. 51.  Chapman, “Neurodiversity Theory,” 63, and also see the footnote on that page. 52. Ibid. 53. Elizabeth Barnes, “Valuing Disability, Causing Disability,” Ethics 125, no. 1 (October 2014): 88–113, DOI .org (Crossref), https://doi.org/10.1086/677021. See also 50 

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Elizabeth Barnes, The Minority Body: A Theory of Disability (New York: Oxford University Press, 2016). 54. Another approach to disability is simply to view all of us (able-bodied and neurotypical included) as having limitations and weaknesses in at least some areas of life, such that the healthy/unhealthy or ordered/disordered approach seems too simplistic on its face. See Tom Shakespeare and Nicholas Watson, “The Social Model of Disablity: An Outdated Ideology?,” in Exploring Theories and Expanding Methodologies: Where We Are and Where We Need to Go, eds. Sharon Barnartt and Barbara Altman (UK: Emerald Publishing Limited, 2001), 9–28. This notion of universal impairment is perhaps better framed as a kind of mere-difference model: all ways of being come with some impairments in some contexts; what then matters is not the freedom from impairments, but whether the average value across all contexts reduces such local impairments to “mere-difference” status. 55.  For a criticism of Barnes’s approach, see Guy Kahane and Julian Savulescu, “Disability and Mere Difference,” Ethics 126, no. 3 (April 2016): 774–88, DOI.org (Crossref), https://doi.org/10.1086/684709. See also David DeVidi and Catherine Klausen, “No Mere Difference,” Dialogue 56, no. 2 (June 2017): 357–79, DOI.org (Crossref), https://doi .org/10.1017/S0012217317000397. 56. Elizabeth Barnes, “Replies to Commentaries,” Philosophy and Phenomenological Research 100, no. 1 (January 2020): 232–43, DOI.org (Crossref), https://doi.org/10.1111 /phpr.12668. 57.  Ibid., 238. 58. Ibid. 59. Ibid. 60. Jaarsma and Welin, “Autism as a Natural Human Variation.” 61.  D. Barnbaum, The Ethics of Autism: Among Them but Not of Them (Bloomington: Indiana University Press, 2008). 62.  Hughes, “Does the Heterogeneity of Autism Undermine the Neurodiversity Paradigm?” 63.  Ryan H. Nelson, “A Critique of the Neurodiversity View,” Journal of Applied Philosophy 38, no. 2 (May 2021): 335–47, EBSCOhost, https://doi.org/10.1111/japp.12470. 64.  It’s worth taking a moment to do a quick public service announcement regarding some debunked methods of communicating with some neurodivergent individuals who lack any spoken, or signed, or written, or typed language: facilitated communication (FC) and the rapid prompting method (RPM) have both been discredited for some time now. Unfortunately, this is not yet common knowledge among all researchers and voices within the neurodiversity literature. The American Speech-Language-Hearing Association has compiled numerous position statements from a wide variety of credible organizations pointing to the overwhelming evidence against the credibility of these methods of communication: https://www.asha.org/slp/cautions -against-use-of-fc-and-rpm-widely-shared/.

65. Each of these concerns are raised, in one form or another, in the following anthology: Hanna Bertilsdotter Rosqvist, Nick Chown, and Anna Stenning, eds., Neurodiversity Studies: A New Critical Paradigm (Routledge, 2020). 66.  For one example of such an exchange, see Guy Kahane and Julian Savulescu, “Disability and Mere Difference,” Ethics 126, no. 3 (April 2016): 774–88, DOI.org (Crossref), https://doi.org/10.1086/684709. And then see Barnes’ reply in Elizabeth Barnes, “Reply to Guy Kahane and Julian Savulescu,” Res Philosophica 93, no. 1 (2016): 295–309, DOI.org (Crossref), https://doi.org/10.11612/ resphil.2016.93.1.15. 67.  The alleged coherence, or incoherence, of such individuals has played an important role in some metaethical disputes. For a critical discussion of such cases and their role in philosophy, see Sharon Street, “In Defense of Future Tuesday Indifference: Ideally Coherent Eccentrics and the Contingency of What Matters,” Philosophical Issues 19, no. 1 (October 2009): 273–98, DOI.org (Crossref), https://doi. org/10.1111/j.1533-6077.2009.00170.x. Street’s discussion of an ideally coherent anorexic scenario begins in section 2, 276–81. 68. Having such caveats distinguishing real-life people from philosophically relevant hypotheticals is one of the “lessons” Street defends concerning such scenarios in Street, “In Defense of Future Tuesday Indifference.” 69.  Chapman, “Neurodiversity Theory.” 70. Ibid. 71.  Hens, Robeyns, and Schaubroeck raise this concern as an open question at the end of their article: Kristien Hens et al., “The Ethics of Autism,” Philosophy Compass 14, no. 1 (January 2019): e12559, DOI.org (Crossref), https://doi .org/10.1111/phc3.12559. See also the following for a similar concern explored in more depth as it relates to moral responsibility and the autism spectrum: Christian Perring and Adam Kohler, “Are People with Autism Morally

Responsible for Their Harmful Actions?,” in Ethics and Neurodiversity (2013): 260–75. 72.  K. Shields and D. Beversdorf, A Dilemma for Neurodiversity,” Neuroethics 14, no. 2 (2021): 125–41, https://doi .org/10.1007/s12152-020-09431-x. 73. A. Creaby-Attwood and C. S. Allely, “A Psycholegal Perspective on Sexual Offending in Individuals with Autism Spectrum Disorder,” International Journal of Law and Psychiatry 55 (2017): 72–80. 74.  For instance, concerning the clash of Title IX expectations with the social reasoning impairments of autistic college students, Lee Burdette Williams describes her work with autistic students as “about 75 percent translation services.” Lee Burdette Williams, “The Nexus of Autism and Title IX,” Inside Higher Ed, February 2018, https://www.inside highered.com/views/2018/02/08/colleges-should-under stand-special-issues-related-autism-and-title-ix-opinion. 75. Ibid. 76. What follows comes from Shields and Beversdorf, “A Dilemma for Neurodiversity.” 77. This is a paraphrasing of a real case, taken from J. Barry-Walsh and P. Mullen, “Forensic Aspects of Asperger’s Syndrome,” The Journal of Forensic Psychiatry and Psychology 15 (2004): 96–107. 78. Ibid. 79.  N. Katz and Z. Zemishlany, “Criminal Responsibility in Asperger’s Syndrome,” The Israel Journal of Psychiatry and Related Sciences 43 (2006): 166–73. 80.  Many neurodiversity proponents argue against the use or meaningfulness of such labels (e.g., Ari Ne’eman); I’m simply noting here that the difficulty we are examining here doesn’t turn on this distinction. 81.  Murphy, “Concepts of Disease.” 82.  Craig Edwards, “Ethical Decisions in the Classification of Mental Conditions as Mental Illness,” Philosophy, Psychiatry, & Psychology 16, no. 1 (March 2009): 73–90, esp. 81.

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SEC TION II

DECISION-MAKING IN HEALTH CARE

CHAPTER 5

Substituted Decision-Making Anna-Karin Margareta Andersson

A

core principle of medical ethics states that patients should be allowed to determine whether they wish to accept or refuse treatment, if they possess the relevant decision-making capacity at the time treatment decisions need to be made. In cases where patients lack the capacity to make decisions regarding their own treatment, substitute decision-makers must make such decisions for them. This chapter begins with the explication of criteria for decision-making capacity and decision-making incapacity. It then outlines the main standards of substituted decision-making in the legal context: the Substituted Judgment Standard and the Best Interests Standard. It then discusses the moral groundings of these standards. The moral groundings are commonly understood to be the two cornerstones of medical ethics: the principle of respect for patients’ autonomy and the principle of beneficence. It then discusses how these standards apply to the formerly capacitated patient and the never-capacitated patient. It finally discusses conceptual, metaphysical, and moral challenges of substituted decision-making. The chapter concludes with a summary of the most pressing issues of the contemporary debate on substitute decision-making and suggestions for fruitful future research focus.

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DE C I S I O N -MA K I N G C A PAC I T Y A ND DE C I S I O N -MA K I N G I N C A PAC I T Y The understanding of the contemporary debate on substituted decision-making requires the understanding of the core concepts “decision-making capacity” and “decision-making incapacity.” What sense of “decision-making incapacity” motivates the replacement of the patient’s decision with the decision of a substitute decision-maker? In England and Wales, the Mental Capacity Act of 2005 serves as the guiding legal document for the assessment of mental capacity. I will first outline the criteria for decision-making capacity in British legislation on substituted decision-making because the British legislation is one (although not the only) representative example of a legislation that implements what could defensibly be regarded as an interpretation of the most influential standards of decision-making capacity. These standards, and their similarities with the Mental Capacity Act, are explicated in the following. We will focus on the sections of the Mental Capacity Act that cover the capacity to consent to medical treatment. According to the Mental Capacity Act sections 2(1) and 3(1), an individual is incapacitated if he or she fails to satisfy any of its criteria for

mental capacity. The Mental Capacity Act’s criteria for mental capacity are capacity to: (1) understand the information provided, (2) retain the information provided, (3) use the information provided, and (4) weigh and communicate the information provided.1 Another major collection of guidelines for the assessment of decision-making capacity is the MacCAT-T standard.2 The MacCAT-T standard is based on the most influential theory of decision-making capacity to date, introduced by Grisso and Appelbaum.3 There is a rough agreement that a sound theory of decision-making capacity should include certain elements, which are interpreted in the MacCAT-T standard as follows: (1) Choice: this criterion refers to the capacity to “express” or “communicate” a choice. Capacity to express or communicate one’s choice is necessary because if a subject cannot express his or her preferences, it is not possible to know his or her decision.4 (2) Understanding: In order to be capable of giving consent to treatment, an individual must understand the relevant facts related to the intervention. According to Grisso and Appelbaums’ interpretation, “comprehension” and “knowledge” of relevant facts are minimal requirements for understanding.5 However, the requirement of “understanding” can be very complex depending on how it is being interpreted.6 (3) Appreciation: The requirement of appreciation means that the patient must also have some appreciation of the decision’s significance for the patient.7 The facts and their implications for the individual must mean something to him or her. A minimal interpretation of this requirement states that the patient not only comprehends the information but also believes that the information applies to him or her.8 If a patient suffering from dementia is able to grasp that her doctors wish to amputate her feet because she faces a significant risk of dying otherwise, yet talks about what she will do once her feet are healed, she does not have “insight” in the required sense.9

(4) Reasoning: Ability to reason is necessary in order for the individual to understand and appreciate in the aforementioned senses.10 Theorists disagree regarding the extent of overlap between the Mental Capacity Act and The MacCAT-T. Some hold that the two models are, in practice, the same. They consider “using” to be similar to “appreciation” because one does not use information without fully accepting it. “Weighing” has been considered similar to “reasoning” (this is commonly understood as the capacity to “weigh and compare options”). However, there is no consensus to date.11 Let us assess the five commonly accepted requirements of a sound account of decision-making capacity. Inclusivity requires that most “ordinary” adults are considered as having decision-making capacity.12 Lack of inclusiveness is commonly regarded as a feature that should lead us to reject an account of decision-making capacity.13 Decision relativity requires that the relevant incapacity is incapacity regarding the specific treatment decision at hand. Incapacities that do not affect the patient’s capacity to make decisions regarding the treatment are not relevant when the need for substituted decision-making is being considered. Allen Buchanan and Dan Brock hold that “competence is competence for some task, competence to do something.”14 They then specify their own focus, which is “competence to make a decision.”15 All-or-nothing assessment requires that the patient be judged to either have decision-making capacity or not. Although capacity can occur in degrees, for practical purposes, we must be able to determine whether she is capable to decide or not. Value neutrality requires that patients should not be judged incompetent simply because they make unorthodox or controversial choices.16 Independence from diagnosis requires that the patient should not be regarded as incapacitated simply because he or she has received a certain diagnosis. Finally, some theorists have advanced an additional requirement, which is not as commonly accepted as the previous five. Theorists have argued that there might be an asymmetry

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between capacity to consent to treatment and capacity to refuse treatment. This could be considered as a sixth, although more controversial, desideratum. We might want to apply more demanding criteria of decision-making capacity for refusal of treatment because the consequences of refusal are potentially more grave for the patient. Although virtually all theorists agree that something like the features discussed before in relation to the Mental Capacity Act and the Mac-CAT-T are necessary for the possession of decision-making capacity, there is an ongoing debate regarding whether these features are also sufficient. Theorists have argued that the criteria for decision-making capacity fail to acknowledge how emotions, for example, those associated with depression, affect decision-making capacity. Others criticize the criteria for failing to distinguish between those of the patient’s values that are sound and those that are arguably not. Examples of values that arguably are unsound is the extreme value anorexics put on being thin. Patients diagnosed with anorexia have been deemed as possessing decision capacity in the light of the criteria of the MacCAT-T standard.17 Hawkins and Charland explain how the standards of decision-making capacity of the Mental Capacity Act and Mac-CAT-T are supposed to relate to the desiderata just discussed. We noted that the standards of the Mental Capacity Act and Mac-CAT-T are based on the desiderata, and that the desiderata are based on the 1998 theory of Grisso and Appelbaum. The adequacy of any set of standards for assessing decision-making capacity and decision-making incapacity and the theory these standards rely on depend on whether the standards and the theory capture the paradigmatic examples of decision-making capacity and incapacity. “Thus, in the initial instance, a theory is built around a selection of paradigm examples of what capacity and incapacity should be taken to be.”18 Many people would regard the desire for extreme thin-ness to be a paradigmatic example of a desire that should lead us to regard the anorectic as lacking decision-making capacity. Still, the anorectics in the aforementioned study did satisfy the standard criteria for decision-making capacity. This is an example of possible 56 

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discrepancy between the standards for decision-making capacity and what could be regarded as a paradigmatic example of decision-making incapacity. Suppose we have agreed regarding the criteria for decision-making incapacity. Once we have identified a case where substituted decision is needed, we must sort out what standards should guide the substituted decision-makers.

T H E S U B S T I T U T E D J U DG M E N T S TA N DA R D A N D T H E B E S T I N T E R E S TS S TA N DA R D In the legal setting, two general standards are regarded as the main approaches for determining how some instance of substitute decision-making ought to be conducted. The Substituted Judgment Standard states that the substitute decision-maker should strive to reconstruct the decisions the patient himself or herself would have made in the present circumstances had he or she been capable of deciding. Let us explore the moral origins of the Substituted Judgment Standard. It is common to hold that substituted judgment is justified as a means of respecting the patient’s autonomy. If health care professionals are required to respect patients’ (sufficiently) autonomous, informed decisions, it might be defensible to suggest that they should aim at showing implicit respect for incapacitated patients’ autonomy by trying to reconstruct the choices of patients who are disabled by, for example, dementia, severe mental disorders, or neonatal conditions. What sense of “autonomy” do defenders of the principle of respect for autonomy refer to? According to one interpretation, autonomy should be understood as a second-order capacity. This interpretation of the concept of autonomy requires the understanding of the relation between “first-order” and “second-order” preferences. Autonomy understood as a second-order capacity is the capacity to reflect over one’s “first-order” preferences and the capacity to make reflective choices between the courses of action available.19 An example of a “first-order” preference might be a preference to

smoke. A “second-order” preference might be a preference not to smoke, all things considered. Autonomy understood as a second-order capacity is a capacity to reflect over whether the first-order preference should guide the agent’s choice whether or not to perform a certain act, for instance, smoke. This understanding of personal autonomy is subject to the challenge of regression: theorists have pointed out that even the second or third order of a preference could require further critical scrutiny. How do we know when we have exposed our preferences to a sufficient amount of critical scrutiny? Another challenge to this interpretation of “autonomy” is that the reflection on our first-order preferences might distort our preferences rather than reveal our most “authentic” preferences. Explaining to one’s partner that one has scrutinized one’s commitment to the relationship might damage the relationship, even in cases where the examination reveals a deeper commitment than previously assumed by the person who scrutinized it.20 Another interpretation holds that an agent is acting autonomously when his or her current or longterm views about which actions are worth performing guide his or her actions.21 Other interpretations claim that in order for the agent to be acting autonomously, there must, in addition, be harmony between the agent’s actions and the agent’s long-term plans.22 Yet others refer to a stable set of emotional states,23 or to the agent’s character traits24 or to his or her most thoroughly integrated states.25 All these accounts of personal autonomy agree that an action cannot be “attributed to” the agent if she “distances” herself from the action while she performs it. More precisely, according to Buss and Westlund, accounts of personal autonomy that hold autonomous agents to be “constrained by plans,” or “by well-integrated emotions,” or “traits of character” assert that an agent’s “point of view” is not “a function of whatever mental state(s) she happens to be in at some point in time.” Hence, “it is reasonable to think that her stance toward her motives is determined by her long-term values and/or her relatively stable commitments and cares.”26 The second main legal standard for substituted decision-making is the Best Interests Standard,

according to which the substitute decision-makers should ground their decision on a prognosis of what treatment would best accommodate the patient’s interests, broadly conceived. The Best Interests Standard can be morally justified by reference to The Principle of Beneficence, discussed by Beauchamp and Childress in their classic work Principles of Biomedical Ethics. Philosophers have developed numerous accounts of what “benefiting” someone amounts to. The legal standard of best interests presumes a generic conception of interests, focusing on what a “reasonable” person would prefer under these specific circumstances. Such preferences include freedom from pain, being comfortable, and having one’s capacities restored. The Best Interests Standard has mostly been used when very limited or no information about the patient’s idiosyncratic values and preferences are available. However, as Jaworska has pointed out, “There is no reason why, in principle, the Best Interests judgment could not be as nuanced and individual as the best theory of well-being dictates.”27 According to Jaworska, retreating to considering only the “generic” interests is necessary when the patient has never been capacitated. In such cases, there is no information available that could guide the substituted decision-makers toward a more idiosyncratic understanding of the patient’s best interests.28 The claim that even unconscious individuals can have interests while they are unconscious, so that it makes sense to talk about what treatment would be in their best interests, has commonly been regarded as uncontroversial. However, recent contributions problematize this claim on the grounds that there remains unclarity regarding what it actually means for an unconscious person to have interests while she is unconscious. Following Hawkins,29 they argue that the most convincing interpretation of the claim is that an individual can have interests while she is temporarily unconscious if she would have certain actual interests if she were conscious, or will have certain interests once she regains consciousness. Notably, even individuals who have never been conscious satisfy these criteria, if they will be conscious in the future.30 S u bstit u ted D ecision - M akin g  

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The requirement to obtain a capacitated patient’s informed consent to treatment has commonly been regarded as supported by the principle of respect for autonomy. We saw that substituted decision-making has been regarded as a way of indirectly respecting the incapacitated patient’s autonomy. It is, however, important to note that recent contributions to the legal and philosophical literature on substituted decision-making argue that the standards of decision-making capacity and the standards of autonomy have been run together in the Mental Capacity Act and that these standards should be regarded as separate. Obtaining the patient’s informed and un-coerced consent does not in itself guarantee that the patient has reflected on the decision at hand. English and Welsh law include requirements that could partly avoid this problem: they require that the capacitated patient not only give her un-coerced consent after receiving the relevant medical information but that she has also understood and reflected on the information. Lewis31 argues that an individual may possess mental capacity, which is necessary but insufficient to possess autonomy, and possess full medical information while being un-coerced by medical staff. Nevertheless, she might be vulnerable due to coercion or dependency for care from individuals other than medical staff. She is then capable of making decisions regarding her treatment, yet she is not autonomous. These individuals have been classified as capacitated vulnerable patients. In such cases, courts have authorized substitute decision-makers to make decisions on these individuals’ behalf, attempting to eliminate the vulnerability. According to Lewis, the current use of substituted decision-making to alleviate the vulnerability of such patients is objectionable because depriving a capacitated yet vulnerable patient of decision-making authority arguably conflicts with the requirement to respect her freedom to exercise her capacity for autonomous choice. To avoid such conflicts, Lewis recommends that the capacitated vulnerable patient be given decision-making authority, with support, whenever possible: “Clinicians offering treatment options and describing probable benefits and potential harms. On the other hand,

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patients are required to communicate their values and preferences.”32 Having a clear map of the available standards that might guide substituted decision-making, we are equipped to discuss what method of substituted decision-making is most suitable for different categories of patients.

TO WH O M DO T H E S TA N DA R DS A P P LY? Substituted decision-making applies to formerly capacitated patients and never-capacitated patients. Formerly capacitated patients are patients who were previously capacitated but have lost their relevant decision-making capacities. Examples include patients suffering from dementia and patients who have suffered serious strokes. The substituted judgment standard is commonly regarded as suitable for this category of patients. Formerly capacitated patients may have formulated explicit, written preferences regarding their treatment in the event they become incapacitated. Written instructions regarding the patient’s treatment preferences in case of future incapacitation are called advance directives. Never-capacitated patients are patients who have never possessed the relevant decision-making capacity. Examples include infants and patients who are born with severe cognitive disability. As these patients have never expressed any preferences regarding their treatment, the best interest standard is commonly regarded as the only option for this category of patients. However, if we accept the previously mentioned suggestion that temporarily unconscious patients can have interests in the sense that they would have some actual interests if they would be conscious, we are equally entitled to say that they would be capable of making certain choices if they were capacitated. If this claim is accurate, unconscious patients could be viewed as possessing “dispositional” capacity for making choices. The substituted judgment standard could then be applied even to patients who have never been

conscious: the substituted decision-maker could attempt to reconstruct what choices the patient would make if she were capacitated. The challenges of this view are epistemological challenges, but the view is coherent.33 The Substituted Judgment Standard and the Best Interests Standard, as well as the moral groundings of these standards, support a major account of how these standards apply to the previously capacitated patient and the never-capacitated patient. The “orthodox view,” defended by Brock34 states: 1. Respect a written instruction (“advance directive”) regarding the patient’s preferences regarding her treatment, should she become incapacitated, whenever a directive is available. 2. If the patient never wrote an advance directive, apply the Substituted Judgment Standard, relying on available information about the patient’s past decisions and expressed values. 3. If medical staff are unable to apply the Substituted Judgment Standard because the patient has never been capacitated or because information about the patient’s former decisions and values is unavailable, they should use the Best Interests Standard. While the “orthodox view” appears to picture the patient and the medical staff as the only parties involved in the substituted decision, recent contributions to the literature emphasize the importance of acknowledging the views of other individuals affected by the decision. Feminist critiques of the standard conceptions of autonomy also emphasize the importance of sound relations to maintain a capacity for autonomy. “Relational” conceptions of autonomy analyze how “internalized oppression” and “oppressive social conditions” adversely affect autonomy.35 The claim to the effect that the standard of substituted judgment is preferable whenever a patient previously expressed views regarding her treatment in case she becomes incapacitated is challengeable in numerous ways.

CHALLENGING THE “O R T H O DOX” V I E W The view that advance directives and the Substituted Judgment Standard should be applied whenever the patient has previously been capacitated does not take into consideration that the “earlier capacitated self’s” interests and “the current incapacitated self’s” interests might conflict. A patient’s loss of decision-making capacity can be permanent but less radical, and “the current incapacitated patient” might now have new interests that differ from the interests she had while she possessed decision-making capacity. While capacitated, she might have valued her intellect highly and expressed wishes not to be treated for life-threatening conditions should she become cognitively disabled. However, once her cognitive impairment progresses, new interests emerge. For example, she now clearly enjoys gardening and music and clearly expresses a will to live. How ought the interests of the earlier and current self be balanced in substituted decision-making? According to one interpretation of this conflict, “The conflict is between the autonomy of the earlier self and the well-being of the current self.” Alternatively, “the interests of the earlier self are well-being interests.” The conflict, then, is between the well-being of the earlier self and the well-being of the current self. The following discussion applies to any of these interpretations.36 We could defend prioritizing the views of “the former self” by pointing to some kind of authority that the former self might have over “the current self.” The reasons for this authority are spelled out differently by different theoretical accounts. The basic idea is that the “former self’s” superior abilities give her authority to control “the current self.” Once “the current self” drops below a certain threshold of capacity, her interests are so marginal that the “former self’s” interests should be given priority.37 The most imposing challenge to this view is that the surrogate must make the best decision for the patient as the patient currently is about how to manage the patient’s life from now on. How are the patient’s

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previous interests relevant for the current decision regarding her treatment?38 A defender of the aforementioned “threshold view” would respond as follows: First, one can satisfy past interests in the present. Ronald Dworkin makes a distinction between “experiential” and “critical” interests.39 Experiential interests are interests in the experiences of enjoyment and interests in avoiding undesired experiences such as irritation. Such interests are clearly grounded in the present. Critical interests do not depend on the experience of their satisfaction. Critical interests are interests in having what one values or cares about being realized. According to Dworkin, it is justified to satisfy a previously capacitated individual’s critical interests. Second, the past critical interests are still her interests in the present, even if she can no longer take an interest in them. Dworkin offers a convincing argument to the effect that satisfying “past” interests can still matter in the present. Other challenges to the “orthodox view” refer to assumptions about the criteria for personal identity. Drastic alterations of one’s psychology due to, for instance, Alzheimer’s disease implies that the individual does not survive. Hence, any interests “one’s predecessor in one’s body” might have had are not a proper ground for decisions on behalf of “the new individual” who subsequently emerged.40 The lack of identity between “the earlier and current self” undermines the authority of the earlier self. Other objections to the orthodox view refer to the criteria for prudential concern for one’s future self. One can claim that because the psychological connections between “the two selves” is so weak, this fact undercuts any authority the former self might have over the current self. We can accept this while also accepting that the changes occur in one individual who persists over time: the former and present selves are not numerically different.41 Jaworska,42 referring to McMahan,43 points out that we 60 

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are still able to challenge “the continuity of interest between the earlier and current self” by scrutinizing the “concern the earlier and current self would appropriately have for one another.”

CO N C LU S I O N This chapter outlined the major themes and issues in the contemporary debate on substituted decision-making. The most influential demarcation of subjects deemed “incapacitated” in legal terms is subject to challenge. The assumption that informed consent should be justified by reference to the principle of respect for autonomy is a major topic of debate. Relatedly, patients who are capacitated according to the legal standards yet vulnerable to coercion and manipulation may be subject to either excessive coercion or left unsupported by the current legal framework. A growing body of literature, inspired by so-called relational conceptions of autonomy, emphasizes the importance of relations for the maintenance of the capacity for autonomy. Arguably, these are the issues that scholars have identified as the core areas of focus within the interdisciplinary field of research on substituted decisionmaking.

N OT E S 1.  Mental Capacity Act 2005, https://www.legislation .gov.uk/ukpga/2005/9/contents. 2.  Thomas Grisso, Paul S. Appelbaum, and Carolyn Hill-Fotouhi, “The MacCAT-T: A Clinical Tool to Assess Patients’ Capacities to Make Treatment Decisions,” Psychiatric Services 48, no. 11 (1997): 1415–19, doi:10.1176/ps .48.11.1415. 3.  Thomas Grisso and Paul S. Appelbaum, The Assessment of Decision-Making Capacity: A Guide for Physicians and Other Health Professionals (Oxford: Oxford University Press, 1998). 4.  Grisso and Appelbaum, The Assessment of DecisionMaking Capacity, 34–37. 5.  Grisso and Appelbaum, The Assessment of DecisionMaking Capacity, 37–42. 6. James F. Drane, “The Many Faces of Competency,” The Hastings Center Report 15, no. 2 (1985): 17, doi:10 .2307/3560639.

7.  Grisso and Appelbaum, The Assessment of DecisionMaking Capacity, 42–52. 8.  Kathleen Cranley Glass, “Refining Definitions and Devising Instruments: Two Decades of Assessing Mental Competence,” International Journal of Law and Psychiatry 20, no. 1 (1997): 5–33, doi:10.1016/S0160-2527(96)00020-9. 9. Virginia Abernethy, “Compassion, Control, and Decisions about Competency,” American Journal of Psychiatry 141, no. 1 (1984): 53–58, doi:10.1176/ajp.141.1.53. 10. Allen E. Buchanan and Dan W. Brock, Deciding for Others: The Ethics of Surrogate Decision-Making (Cambridge: Cambridge University Press, 1989), 24–25, doi:10.1017 /CBO9781139171946; Grisso and Appelbaum, The Assessment of Decision-Making Capacity, 52–58. 11. Hawkins and Charland, “Decision-Making Capacity,” in The Stanford Encyclopedia of Philosophy, ed. Edward N. Zalta (Fall 2020 Edition), https://plato.stanford.edu /archives/fall2020/entries/decision-capacity/. 12. Buchanan and Brock, Deciding for Others, 21; Grisso and Appelbaum, The Assessment of Decision-Making Capacity. 13.  Hawkins and Charland, “Decision-Making Capacity.” 14.  Buchanan and Brock, Deciding for Others, 84. 15.  Buchanan and Brock, Deciding for Others, 84. 16. Jillian Craigie, “Introduction: Mental Capacity and Value Neutrality,” International Journal of Law in Context [Special Issue on Value Neutrality] 9, no. 1 (2013): 1–3. 17.  Jacinta O. A. Tan et al., “Competence to Make Treatment Decisions in Anorexia Nervosa: Thinking Processes and Values,” Philosophy, Psychiatry, & Psychology 13, no. 4 (2006): 267–82, doi:10.1353/ppp.2007.0032: 270; Louis C. Charland et al., “Anorexia Nervosa as a Passion,” Philosophy, Psychiatry, & Psychology 20, no. 4 (2013): 353–65; Louis C. Charland, “Passion and Decision-Making Capacity in Anorexia Nervosa,” AJOB Neuroscience 6, no. 4 (2015): 66–68, doi:10.1080/21507740.2015.1105879. 18.  Hawkins and Charland, “Decision-Making Capacity.” 19. Harry Frankfurt, The Importance of What We Care About (Cambridge: Cambridge University Press, 1988). 20.  Sarah Buss and Andrea Westlund, “Personal Autonomy,” in The Stanford Encyclopedia of Philosophy, ed. Edward N. Zalta (Spring 2018 Edition), https://plato.stanford.edu /archives/spr2018/entries/personal-autonomy/. 21.  Gary Watson, “Free Agency,” Journal of Philosophy 72 (1975): 205–20, reprinted in Watson, 1982, 96–110, and in Watson, 2004, 13–32. 22. Michael Bratman, “Practical Reasoning and Weakness of the Will,” Noûs 13 (1979): 131–51; Michael Bratman, Structures of Agency: Essays (Oxford: Oxford University Press, 2007). 23. Harry Frankfurt, The Importance of What We Care About (Cambridge: Cambridge University Press, 1988); Harry Frankfurt, Necessity, Volition and Love (Cambridge: Cambridge University Press, 1999); Agnieszka Jaworska,

“Advance Directives and Substitute Decision-Making,” The Stanford Encyclopedia of Philosophy, ed. Edward N. Zalta (Summer 2017 Edition), https://plato.stanford.edu /archives/sum2017/enties/advance-directives/; David Shoemaker, “Caring, Identification, and Agency,” Ethics 114, no. 1 (2003): 88–118. 24. Ronald Dworkin, Life’s Dominion (New York: Random House, Inc., 1993). 25.  Nomy Arpaly and Timothy Schroeder, “Praise, Blame, and the Whole Self,” Philosophical Studies 93 (1999): 161–88. 26.  Buss and Westlund, “Personal Autonomy.” 27. Jaworska, “Advance Directives and Substitute Decision-Making.” 28. Ibid. 29. Jennifer Hawkins, “Well-Being, Time, and Dementia,” Ethics 124, no. 3 (2014): 507–42, doi:10.1086/675365. 30.  Anna-Karin Andersson and Kjell Arne Johansson, “Substituted Decision-Making and the Dispositional Choice Account,” The Journal of Medical Ethics 4, no. 10 (2018): 7039. 31. Jonathan Lewis, “Capturing and Promoting the Autonomy of Capacitous Vulnerable Adults,” Journal of Medical Ethics 47, no. 12 (2020), doi:10.1136/medethics -2020-106835. 32. Ibid. 33. Andersson and Johansson, “Substituted DecisionMaking,” 703–9. 34.  Dan Brock, “Death and Dying: Euthanasia and Sustaining Life: Ethical Issues,” in Encyclopedia of Bioethics (Volume 1), ed. W. Reich, 2nd ed. (New York: Simon and Schuster, 1995), 563–72. 35.  Catriona Mackenzie and Stoljar Natalie (eds.), Relational Autonomy Feminist Perspectives on Autonomy, Agency and the Social Self (New York: Oxford University Press, 2000). 36. Jaworska, “Advance Directives and Substitute Decision-Making.” 37. Ronald Dworkin, Life’s Dominion (New York: Random House, Inc., 1993). 38. Jaworska, “Advance Directives and Substitute Decision-Making.” 39. Dworkin, Life’s Dominion, 201–8. 40. Rebecca Dresser, “Life, Death, and Incompetent Patients: Conceptual Infirmities and Hidden Values in the Law,” Arizona Law Review 28, no. 3 (1986): 373–405. 41.  Agnieszka Jaworska. 42. Agnieszka Jaworska, “Caring, Minimal Autonomy, and the Limits of Liberalism,” in Naturalized Bioethics: Toward Responsible Knowing and Practice, eds. H. Lindemann, M. Verkerk, and M. Walker (Cambridge: Cambridge University Press, 2009), 80–105. 43.  Jeff McMahan, The Ethics of Killing: Problems at the Margins of Life (Oxford: Oxford University Press, 2002).

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CHAPTER 6

Autonomy and Responsibility Lisa Dive

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he concept of autonomy is central in bioethics. The notion that individuals have the capacity to direct and determine their own lives by making choices that align with their goals and preferences is a fundamental tenet of contemporary medicine and health care. Fostering patients’ autonomy is seen as a central obligation of health care professionals. Furthermore, autonomy requires us to take responsibility for the consequences of our actions. This chapter traces the historical development of autonomy, particularly as relevant to how the concept has come to be understood in contemporary bioethics. Differences between the more prominent ways of conceptualizing autonomy are outlined, and connections are drawn between personal autonomy and responsibility, particularly in relation to health.

CO N CEPTS O F AU TO NO MY Autonomy is a prominent concept in bioethics and is frequently appealed to as the primary moral justification for an action, decision, or policy in the context of health care and medical decision-making. How autonomy is understood has significant implications for bioethical deliberations and has the capacity to influence clinical care and other aspects of health care practice and policy-making. Dominant 62

ways of conceptualizing autonomy in bioethics include choice-focused accounts of autonomy, procedural theories, Kantian approaches, and relational autonomy. An important distinction with respect to autonomy, to which I will return throughout, is that it can be considered either a property of choices (or decisions) or of people. It also becomes important to deliberate over how autonomy interacts with other relevant values or concepts in bioethics. In the later decades of the twentieth century, the notion of autonomy and the rights of individuals in the context of medical research and health care became increasingly prominent. A series of atrocities and medical crises that came to light during the years following World War II drew attention to the need for medical ethics. Around this time the World Medical Association codified the ethical obligations of doctors in the first Declaration of Geneva (1948) and the International Code of Medical Ethics (1949). While these documents did not focus on autonomy, they were part of a general movement toward recognizing the rights of individuals and the obligations that medical practitioners and researchers have toward their patients and research participants. Meanwhile, in the United States there was a parallel movement that responded to the increasing concern about the welfare of medical research subjects based on the exposure of the Tuskegee syphilis study, among other scandals. A National Commission

responding to these concerns produced a report—the Belmont Report—which articulated, among other considerations, the principle of “respect for persons,”1 in which the origins of the modern bioethical concept of autonomy can be found. The Belmont Report stated that “respect for persons”—one of the three core principles—requires “that individuals should be treated as autonomous agents,” although the notion of an autonomous agent was not elaborated further. Most understandings of autonomy in bioethics build on Kant’s conception, which emerged in the 1780s, and Mill’s notion of liberty from the 1850s. The modern idea of autonomy is often thought to have originated with Kant.2 Schneewind explains that for centuries prior to Kant (although not as far back as the Greek philosophers) morality was understood in terms of obedience, largely based in religious doctrine. A striking feature of this view is that people generally are considered to be ill-equipped to think through morality for ourselves. We are thought to require both the guidance and the threat of punishment from an external authority in order to act morally.3 Kant was part of a movement among eighteenth-century philosophers to rethink morality as a form of self-governance. Such an approach was driven by the claim that we should recognize the fundamental dignity and worth of each individual human, and push back against the assumption that we are incapable of being morally self-guiding. The notion of affording each individual human being equal respect remains central to most contemporary conceptions of autonomy. Kant understands autonomy as a form of self-legislation. It is based around the power that we have to exercise our will or choice, by forming a maxim or a “determination of the will.”4 O’Neill considers that the distinction between autonomous and heteronomous choosing can provide insight into understanding Kantian autonomy. Heteronomously chosen maxims are justified by some external authority, such as the will of the majority, or a religious doctrine. By contrast, a maxim that is chosen autonomously does not require external justification. An autonomously chosen principle is self-justifying and is based in self-legislation. By defining autonomy in this way,

Kant locates morality within human rationality, rather than depending on an external authority. In Kant’s conception of autonomy we can find early connections between autonomy and responsibility. He understood autonomy as self-legislation, but O’Neill suggests that this is best understood as “legislation by coordinated individual selves”5 rather than as individuals who are making their own choices independently. The coordination between individuals is, for Kant, crucial for justifying the morality of autonomously chosen maxims. His categorical imperative requires that autonomously chosen maxims be universalizable, which means they should be acceptable to all people (not only those who subscribe to the same external authority). By acting on such maxims we honor our moral responsibilities to each other. This notion of autonomy is reflected to some extent in contemporary relational accounts of autonomy.6 Mill was also interested in conceptualizing morality as a form of self-governance rather than obedience to an external authority. He prioritized individual liberty, and explored the extent to which society and government would be justified in impinging upon the freedom of individuals to direct their own lives. While he did not specifically refer to the concept of “autonomy,” Mill thought that an individual’s liberty to express their individuality was a fundamental element of well-being.7 He argued that as a general rule individuals should have the freedom to make their own choices even if those choices are not in their own best interests, as long as those choices do not adversely impact others. Mill’s emphasis on individuality and restrictions on any actions that curtail individual liberty was picked up in the late twentieth century in the emerging discipline of bioethics and has been more influential in bioethics than Kant’s understanding of autonomy as self-legislation that incorporates responsibilities to others. Both Kant’s conception of autonomy and Mill’s ideas about individual liberty informed how autonomy came to be understood in bioethics. Following the Belmont Report, Beauchamp and Childress published the first edition of their influential Principles of Biomedical Ethics in 1979. Their concept of A u tonomy and Responsibility 

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autonomy, as set out in the various editions of this text, is arguably one of the most prominent in bioethics. It is strongly influenced by Mill’s concept of liberty, with its emphasis on individuals’ freedom from interference. Autonomy—and, later, the principle of respect for autonomy—specifies that people should be free to act autonomously without interference from others, especially when those autonomous actions are self-regarding, as many medical decisions are assumed to be (although this assumption could be contested).8 Beauchamp and Childress also draw on Kant’s notion of self-legislation to emphasize that a person must act on their own reasons in order to be autonomous, but they make a distinction between being autonomous and respecting another person’s autonomy. The principle of autonomy as they originally describe it involves respecting another person’s autonomously derived actions. The emphasis is on respect for the autonomous actions of others—as opposed to respecting others as autonomous moral agents—and this approach lays the groundwork for discussions of autonomy in medical decision-making to focus on choices and informed consent. A notable feature of the modern bioethical discussion of autonomy is that autonomy is variously thought to be a property either of persons or of choices. Autonomy as a property of persons aligns with the notion of self-governance and reflects Kantian autonomy and even Mill’s notion of liberty. In a simple form, it can be thought of as a capacity to direct the course of one’s own life. Autonomy is a scalar, rather than a binary, property of people: our capacity to be autonomous varies over the course of our lifetime, and in different contexts; it is not a property that we either have or do not have. However in recent decades, and particularly in the context of clinical ethics and medical decision-making, autonomy is often described as a property of choices, rather than of people. While some consider the notion of an “autonomous choice” as a form of shorthand for “a choice that was made by an autonomous person,” some accounts of autonomy focus so much on the features or requirements for autonomous decision-making that there is a shift to emphasize autonomous choices as valuable in their own right. 64 

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Autonomy as Freedom of Choice As the concept of autonomy evolved in bioethics, Mill’s understanding of liberty became more influential than Kant’s notion of autonomy as entailing moral obligations. The requirement for universalizability—drawn from Kant’s categorical imperative— which captures the responsibilities that moral agents have toward others, collapsed into mere respect for other people’s autonomous choices. In later editions of Beauchamp and Childress’s text, Kant’s perspective is described as entailing “a moral imperative to frame certain attitudes of respect,”9 namely a requirement that we respect a person’s freely chosen goals and decisions. The emphasis on people being able to make any choices they wish is a more libertyfocused conception of autonomy, reflecting Mill’s idea that individuals should be allowed to express their individuality without undue interference. It is this latter view that has come to dominate the way that autonomy is conceptualized as one of the central principles of bioethics. Beauchamp and Childress’ four principles of biomedical ethics—respect for autonomy, beneficence, non-maleficence, and justice—are widely acknowledged to be highly influential in bioethics. Hence the concept of autonomy, particularly when not otherwise specified, has a tendency in the bioethics literature to default to how they have articulated it.10 Their theory of autonomy emphasizes three conditions that must be met in order for a decision to be autonomous: intentionality, understanding, and noncontrol.11 Intentionality means that the action or decision has to be deliberate rather than accidental, and the agent must intend to act in that way. The requirement for understanding means that the agent must have a sufficient grasp of the relevant information bearing upon their decision and its likely consequences. It is worth noting that intentionality is a binary concept, while understanding is scalar and therefore admits of degrees. This means that a threshold must be established for a sufficient level of understanding required in order for the resultant decision to be considered autonomous. Finally, the requirement for “noncontrol” means freedom from either internal or external

controls. Internal controls are mental states that constrain the authenticity or freedom of an individual’s choices; typical examples are psychosis or addiction. External controls are coercion or other kinds of undue influence by another person. Noncontrol is also considered to be a scalar property, so some degree of influence (internal or external) may be tolerated, but a threshold must be established in order for an action or decision to be considered autonomous. This notion that autonomy is a feature of free and informed choices is prominent in bioethics. While this approach has some shortcomings, it has also brought some benefits. The emphasis on avoiding coercion and undue control and the focus on sufficient understanding to make an informed decision have contributed to the widespread implementation of health care procedures designed to safeguard patients’ autonomy—or, at least, to enable and uphold their freely made choices. Mechanisms such as informed consent processes and procedures that protect patients from undue deception or coercion are ethically important and beneficial to patients. This prevailing conception of autonomy depends on the person being competent to make their own choices based on a sufficient understanding of the relevant information. There is a complex set of issues around autonomy and consent in relation to mental health. It is often considered that some mental illnesses render a patient incapable of acting autonomously.12 In such a situation a substitute decision-maker might be appointed.13 The freedom-oriented way of understanding autonomy is primarily a negative conception: it focuses on what health care professionals must refrain from doing (coercing, deceiving, failing to provide information, etc.) in order to uphold their patients’ autonomy. In later editions of their text, Beauchamp and Childress also consider health professionals’ positive obligations to respect autonomy, which includes a requirement to disclose relevant information and to undertake “actions that foster autonomous decision making.”14 They focus primarily on what patients or research participants require in order to make autonomous decisions, thereby leading naturally to an emphasis on the decision and how it is made. Such

an emphasis has led to a narrowing of the concept of autonomy that emphasizes individuals and their choices, and the provision of information to ensure those choices are adequately informed. As such, a narrow and choice-focused concept of autonomy emphasizes health care professionals’ responsibilities primarily in relation to procedures (such as providing information and obtaining informed consent) and only indirectly in relation to promoting patients’ well-being or best interests.

Philosophical Concepts of Autonomy While the domains of health care and bioethics were turning their attention to safeguarding the welfare of individual patients and research participants, some philosophers were grappling with the concept of autonomy in a different way. Benn is concerned with the perceived threat of persuasive strategies used by authorities to influence individuals and considers autonomy in the context of the tension between freedom and coercion.15 Benn understands autonomy as a form of self-rule rather than mere freedom. As such, some forms of persuasion or influence might be consistent with, or could even enhance, the persuadee’s autonomy, for example, providing information that is relevant to the decisions they need to make in order to achieve their goals. Later, Benn characterizes autonomy as a property of a person whose life has “a consistency that derives from a coherent set of beliefs, values, and principles, by which his actions are governed.”16 Importantly, the set of moral commitments that govern the actions of an autonomous person are adopted by that person themselves, rather than being imposed by some external authority. Around this time Frankfurt, in his exploration of similar questions around freedom and personhood, introduces the notion of first-order desires and second-order desires.17 A first-order desire is a simple desire to take a particular action, whereas a second-order desire is a will to have a particular kind of first-order desire. Picking up this useful distinction, Dworkin describes second-order or higherorder desires as those that are the product of a particular kind of critical reflection that aligns with the A u tonomy and Responsibility 

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person’s values and goals for the kind of person they want to be.18 First-order desires are more immediate and might require adjustment to align with second-order desires. The classic example of a mismatch between first-order and second-order desires is that of the addict such as a smoker who has a (higherorder) desire to live a long and healthy life, which conflicts with his first-order desire to smoke at a particular time. In such a case, interfering with the smoker’s freedom (e.g., by removing his cigarettes and sticking a nicotine patch on his arm) might be justified as a way of supporting his autonomy. Such a conception of autonomy goes beyond freedom of choice and requires autonomous agents to engage in a reflective process to inform the goals, values, and preferences that will govern their choices if they successfully exercise their autonomy. The importance of this reflection, or the historical process by which preferences are formed, is also emphasized by Christman, who notes that there are various forces that can subvert this process and undermine autonomy.19 Due to their focus on the procedures by which goals and preferences are formed, theories of autonomy such as those of Christman, Dworkin, and Frankfurt, are described as procedural accounts. Within the philosophical literature, distinctions are often made between liberty-focused accounts of autonomy as “mere sheer choice”20 with an emphasis on autonomous decision-making,21 and a more robust notion that incorporates some form of reflective consideration to ensure the authenticity of the choices that an autonomous agent makes.22 Terms like thin and thick23 have been used to describe this distinction. The notion of autonomy is inextricably intertwined with notions of individual freedom, and there is a rich area of scholarship exploring the intersection between autonomous agency and notions of personal or political liberty.24 While an individual’s own goals and preferences are important for exercising their autonomy, feminist bioethics scholars have recognized the substantial influence of each individual’s social and relational context on the way they make decisions and also on the values that inform their goals and preferences.

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Accordingly, there is increasing emphasis on the relational aspects of autonomy.

Relational Autonomy In recent decades, some procedural accounts of autonomy have been the subject of feminist critiques arguing that they are too individualistic due to their focus on a particular patient’s situation and their own personal process of critical reflection.25 On such a view, the emphasis on the individual provides insufficient recognition of an agent’s social and relational context and how these factors bear on their capacity for autonomy. Furthermore, procedural accounts can sometimes omit to identify factors such as social oppression that could undermine autonomy. Donchin26 emphasizes two relational dimensions to autonomy. One is in the context of the patient–physician relationship which is inherently interpersonal, with all the attendant complexities of power and communication. Manson and O’Neill’s account of the communicative interchanges in which medical decision-making takes place captures this relationality.27 The other relational dimension to autonomy that Donchin identifies is that in order to safeguard patients’ autonomy it is also important to pay attention to a patient’s macro societal influences and how these can affect their choices. She explains that people exist fundamentally in relation to others, so all that we do takes place in this social context. Further, the activities involved in exercising autonomy—such as reflecting, planning, choosing, deciding—are themselves social activities that often involve others or are done in ways that are subject to influence by our relationships and social context. Family members and close friends are often relied upon to engage in discussions and support decision-making processes. The choice-focused conception of autonomy, which is most prominent in bioethics, does not always factor in how a patient’s family and social context can work either to enhance or to undermine their autonomy. In contrast, the process of critical reflection that Dworkin outlines can incorporate consideration of the patient’s social and relational

context, specifically as it affects their preference-formation and decision-making processes. The process of critical reflection is socially situated, as are a person’s values, goals, and preferences. When undertaking the kind of critical reflection necessary to adjust or accept one’s first-order preferences in light of higher-order values and goals, people will engage in discussions with family members or trusted friends, health and medical professionals, as well as reflecting upon the broader social dimensions of their life such as their housing or employment situation, which could impact treatment decisions. In this way, some procedural accounts of autonomy can provide mechanisms for incorporating the relational dimensions of autonomy. Iterative decision-making processes are fundamentally embedded in every person’s social situation, and their relationships help to determine and refine their higher-order preferences and values. Due to the significant influence of social context and close relationships on health care choices, if a person lacks the capacity to make their own medical decisions, a proxy decision-maker, who is closely related to the patient, is often nominated since they are people most likely to understand the patient’s higher-order values and goals. Drawing on their familiarity with the patient’s preferences is an important way of supporting clinical decision-making that most closely reflects the patient’s own values. Understood in this way, procedural accounts of autonomy such as Dworkin’s can incorporate the relational aspects of autonomy.

Procedural versus Substantive Autonomy Theories of autonomy such as the choice-focused conception of Beauchamp and Childress, as well as the more philosophically sophisticated accounts of Frankfurt, Dworkin, and Christman are known as procedural accounts: they emphasize the importance (for determining a person’s autonomy) of specific procedures in forming the goals and preferences that shape that person’s decisions and actions. These approaches are neutral with respect to the content of those goals and preferences: as long as the person is

sufficiently competent to be autonomous and their higher-order goals have been formed by appropriate processes (without coercion or manipulation), then the person can be deemed autonomous. The problem with the content neutrality of the procedural accounts of autonomy is that the requirements for autonomy focus on the process by which decisions are made rather than the content or substance of those decisions, and the goals and preferences that influence them. As such, it can be difficult to determine the authenticity of a goal or preference. This makes procedural accounts unable to explain or account for some failures of autonomy, such as when the appropriate procedures are in place, but for other reasons we do not judge the person to be autonomous.28 Substantive autonomy considerations can be helpful in identifying contextual factors that undermine a person’s capacity for autonomy. One such example is when there might be a context of oppression that is influencing a patient’s decision-making.29 In such a situation, the patient’s perceived choices might not reflect accurately their authentic goals and values, as they have been subjected to oppressive social norms that undermine their capacity to exercise their autonomy. It has been argued that procedural accounts of autonomy are insufficient as they cannot detect such influences. Substantive accounts of autonomy also become important in the context of mental illnesses that affect evaluative capacities. It has been argued that “normatively neutral” conceptions of autonomy—such as procedural accounts— will, in some cases, fail to detect some instances of mental illness that undermine autonomy.30 For reasons such as the challenges posed by mental illness and social oppression, some have argued that “normative competence” is an additional, substantive requirement for autonomy. Normative competence is a neo-Kantian notion that refers to a capacity to identify norms and decide whether or not to apply them in the context of the decisions one is making. Wolf describes normative competence as our capacity to evaluate the options available to us based on their normative (values-related) content and to make better or worse choices based on this evaluation.31 Raz,

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in his moral account of freedom, identifies a requirement for an adequate range of options as one of the conditions for autonomy.32 A number of factors are relevant to assessing the adequacy of options. One important consideration is that we should be able to exercise our autonomy both in terms of developing and pursuing long-term significant goals—such as our occupation, personal relationships, and so on—but we also need to have some control over the smaller day-to-day decisions that affect our lives, such as what to wear, the route we take to work, and such. Raz also observes that the quality of the options matters more than the quantity. Choosing between a large number of nearly identical options is of little value and does not contribute substantially to our self-determination as much as a smaller number of choices that differ in substantial ways. So the content of the available choices, goals, preferences, and so on—what they are about—can make a substantive difference to our autonomy.

Prioritizing Autonomy? Autonomy is often treated as something like a moral “trump” card, in the sense that it is somehow prior to or more important than other moral considerations. In the context of Beauchamp and Childress’ four principles, some, such as Gillon, argue explicitly that respect for autonomy is the most important value, or at least “first among equals.”33 He considers that autonomy is a precursor to the principles of beneficence and non-maleficence, as well as being a fundamental component of distributive justice. He claims that individual autonomy is a necessary requirement for morality itself, and his view is reflected in a common assumption that is often implicit rather than explicitly articulated: namely, that respect for (individual) autonomy should overrule other moral considerations. One of the problems with prioritizing autonomy—construed as freedom of choice—is that there is increasing evidence that people often make decisions that are not based in reason and can be contrary to our best interests. Conly presents evidence about such cognitive failures based on research in the fields of psychology and behavioral economics.34 68 

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Based on this evidence, she argues that in certain circumstances the best way to enable people to achieve “their own ultimate goals” might be to constrain their autonomy, understood as freedom of choice. Medical decision-making is a context in which emphasizing individual free choice might sometimes undermine patients’ well-being, and it has been argued that in some circumstances it could be justifiable to curtail a patient’s freedom in order to safeguard their (authentic or perhaps future) autonomy.35 Even competent adults are subject to a wide variety of failures of reasoning—such as inaccurate weighing of different options and possible outcomes, unreliable recall, and biased forecasting—which cause us to make decisions that do not align rationally with our own, authentically chosen goals. Levy argues, therefore, that informed consent processes—which are justified by the presumption that they promote patient autonomy—might actually in some circumstances undermine patients’ capacity to direct their lives in accordance with their values and preferences. Arguments such as those of Conly and Levy serve to reinforce the distinction between freedom of choice and autonomy, the latter being a richer notion that describes a capacity to reflect on one’s values and goals and direct one’s life in accordance with those authentically chosen goals. Shifting away from equating autonomy with freedom, this can be understood as a requirement—in certain circumstances— to constrain people’s freedom of choice in order to enhance their capacity to live a life in pursuit of their own goals and consistent with their values, namely their version of a flourishing human life. A substantive conception of autonomy is consistent with a broader view of morality that does not automatically prioritize autonomy. Underpinning a substantive understanding of autonomy is the notion that there is some objective standard for a flourishing human life. Such a view draws on an Aristotelian perspective that there are some essential features that constitute a good human life but that these components are vague enough that they can be adapted to a range of different historical and cultural contexts and to individual preferences.36 If some objective (but adaptable) standard can be established, that provides

a way of assessing when an individuals’ free choices might be undermining their well-being. On such an account it might be justified in some circumstances to override a patient’s “autonomy” (understood as mere freedom of choice) in order to foster their longterm flourishing, which could be seen as consistent with their autonomy more broadly construed. The idea that prioritizing autonomy (understood as freedom of choice) might sometimes undermine patients’ well-being means that we should not assume unreflectively that autonomy is always the most important moral consideration, as is sometimes presumed in bioethics. However, autonomy remains an important factor in bioethical deliberations. The concept of personal autonomy is one of the primary considerations in a range of determinations, including attributions of moral agency and responsibility.37

CO NCEPTS O F R E SP O NSI B I L I T Y Closely connected with an understanding of people as autonomous agents is the notion that we are in some way responsible for our choices and actions, beliefs, preferences, and so on. In order to be responsible for these things that we do and attitudes we hold, we must have the opportunity to do or be differently. Therefore, the notion of responsibility is intertwined with the philosophical debate about determinism and free will. Determinism—the idea that every action or choice we make is causally determined by the preceding state of the world, given the laws of nature—is a significant problem in philosophy, and is beyond the scope of this chapter.38 Therefore, for the purposes of enabling the discussion of responsibility, I will assume that we have some capacity to influence our own actions and attitudes. There are different concepts of responsibility, so first I will set out some key distinctions in the way that responsibility is understood, and then explore the requirements for responsibility and the role that autonomy plays. The notion of responsibility is a particular kind of connection between an agent and a state of the world or an outcome. One of the central distinctions among the ways of understanding responsibility is between

moral responsibility and causal responsibility. If a person is causally responsible for some outcome, then that means that they are a salient cause of that outcome, that they played an important role in bringing about that particular consequence. While causation is complex and can be difficult to establish, often it is quite clear that a person has contributed to a particular outcome. Causal responsibility does not necessarily entail moral responsibility. Holding people morally responsible for an occurrence or for the consequences of their actions involves making a judgment that they deserve either praise or blame for their actions in causing that consequence. In order for an agent to be morally responsible, they generally need to have some sort of power or control (to act or refrain from acting)—the “control condition”—and also must have some knowledge about the likely consequences of that action—the “epistemic condition.” These conditions can be traced back to Aristotle who holds that an agent cannot be blamed (nor praised) for an involuntary action, by which he means one that occurs “by force or through ignorance.”39 Actions that are forced are caused by something external to the agent, so do not meet the control condition. Likewise, actions undertaken in conditions of ignorance fail to meet the epistemic condition. However, when both the control condition and the epistemic condition are met, then an agent is deemed morally responsible. That is, they are the object of a normative attitude such as praise or blame, and we deem that attitude to be directed appropriately. A distinction can also be made between backward-looking and forward-looking conceptions of responsibility. Holding an agent morally responsible for their past actions is a backward-looking way of understanding responsibility. By contrast, forward-looking responsibility concerns the reasons a person has for taking certain actions or making certain choices. It has been argued that in relation to health, the focus should be on forward-looking responsibility because it serves a useful purpose and correlates with autonomy, while blaming people for their past actions might be inappropriate and does not promote autonomy.40 A u tonomy and Responsibility 

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Being responsible in the forward-looking sense can also be understood as having some kind of obligation. An important consideration for such an understanding of responsibility is to specify from whence obligations arise. One view is that while we have negative obligations not to harm each other, and so on, we have only minimal positive obligations to each other. In order to take on more substantial duties or obligations (“special positive duties”) there must be a deliberate act of acceptance or consent to take on that obligation.41 While such additional duties or responsibilities often arise from specific roles (such as parent or doctor), they require exposing oneself to risk and as such demand consent. An alternative perspective is that we all have an array of complex (even sometimes conflicting) obligations to others. We can consider not only the responsibilities we have to each other as individuals—particularly, those that arise from certain kinds of relationships—but also those we have as members of a community.42 Within moral responsibility there is a distinction between attributability and accountability. If a person’s actions are attributable to them, that is a necessary but not sufficient condition for moral responsibility. They might be held more weakly responsible than someone who is accountable. Accountability requires a greater degree of control over one’s actions, the kind of control we would ascribe to individuals we deem to be autonomous. People who are accountable are more “robustly” responsible for their actions and warrant social practices such as praise or blame. A focus on individual autonomy in the context of health has contributed to public health approaches that hold individuals morally responsible for their own health outcomes, even when individual choices are significantly constrained by social determinants of health. Such a discussion typically focuses around moral responsibility in relation to behaviors—such as food choices, exercise habits—that contribute to chronic diseases. On the assumption that individuals are free to make their own choices, failure to constrain first-order desires in service of long-term health benefits is often considered blameworthy and might be subject to social stigmatization, inducing guilt. However, with recognition that there are constraints 70 

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upon our autonomy that are strongly correlated with socio-economic circumstances, attempts have been made to shift from the moral responsibilization of health-affecting behaviors. An alternative to moral responsibility is the notion of prudential responsibility. For many health-affecting decisions, choices, beliefs, preferences, and so on, it could be argued that we have prudential reasons to make certain choices, hold particular beliefs, and so on, rather than moral reasons.43 On such a view, we have reasons to make choices that foster our long-term health, but some people’s circumstances undermine their capacity to be autonomous, rendering them unable to act on those reasons. While there remain valid reasons for acting in ways that promote health, a failure to do so would not be subject to social practices such as blame and stigma on a prudential understanding of responsibility for health.

Requirements for Responsibility Examining the requirements for responsibility provides insight into its connection with autonomy. The control condition is the requirement that a person must have control over their actions in order to be held responsible (for backward-looking responsibility) or to take responsibility for certain choices or behaviors (in the case of forward-looking responsibility). In other words, they must have a certain level of autonomy or self-determination. The requirement for control is a reason why autonomy and responsibility are inextricably linked: only autonomous people can be held responsible. The epistemic condition is the other requirement for holding someone responsible. It means that they must have a degree of knowledge about the likely consequences of their action. The epistemic requirement for responsibility is also connected to an agent’s autonomy, since the choice-focused conception of autonomy assumes that information is a requirement for autonomy. While a degree of knowledge and understanding is required for autonomous action, in some health care contexts—such as informed consent procedures—the information requirement has translated into a maximizing approach to information

provision. However, more information does not always make a person more autonomous.44 A person’s capacity to act autonomously requires a degree of understanding, not necessarily all the available information. Similarly, in order to hold an agent responsible for their actions, they require sufficient understanding, along with a desire and capacity to control their actions and attitudes. Diachronic responsibility is another requirement that has been proposed in relation to responsibility for health-affecting behaviors.45 This condition is based on the idea that behaviors and choices that affect our health are often repeated over time, or habitual. While some significantly health-affecting behaviors happen once (such as surgery or long-lasting vaccination), others influence health only if undertaken repeatedly over time (e.g., smoking or exercising). For such actions, holding someone responsible requires that the epistemic and control conditions are upheld at various times when the actions were taken (all, many, or sometimes—depending on how strongly the diachronic condition is required). Just as a person’s autonomy can fluctuate over time, so can their responsibility for actions that influence their health. Dyadic responsibility is relevant to behaviors that are influenced by the environment, and therefore by different agents who act to shape that environment. For example, a person whose friends regularly offer them cigarettes, or whose partner purchases unhealthy food for the family, is more likely to make unhealthy choices. Dyadic responsibility extends the locus of responsibility beyond the individual, particularly to their close relationships. Extending the concept of dyadic responsibility is that of social responsibility in bioethics.46 This is the notion that attributions of responsibility should take into account the social factors that influence an individual’s health. On this account, those who have the capacity to influence the social determinants of health—such as policy-makers and legislators, as well as all members of a society— share the responsibility for health outcomes. Dyadic or social responsibility reflects the fundamentally relational nature of our autonomy, which depends in important ways on our social context and relationships.

CO N C LU S I O N This chapter has explored ways of understanding autonomy variously as a property or capacity of persons, or as a feature of certain kinds of decisions. The prominent conception of autonomy in bioethics that emphasizes individuals’ freedom of choice has been contrasted with richer, more substantive notions of autonomy that describe our capacity to direct our lives in ways that align authentically with our values and goals and are contextualized within our social relationships. The chapter has explored the notion of autonomy as a requirement for responsibility in relation to health-affecting behaviors. While autonomy is central and essential in bioethics, I caution against prioritizing autonomy unreflectively, emphasizing the importance of attending to social context both in order to promote autonomy and for purposes of attributing responsibility.

N OT E S 1. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979. 2.  Groundwork of the Metaphysics of Morals, trans. Mary Gregor, 1998 ed. (Cambridge, UK: Cambridge University Press, 1785). 3.  J. B. Schneewind, The Invention of Autonomy: A History of Modern Moral Philosophy (Cambridge, UK: Cambridge University Press, 1998). 4. Onora O’Neill, “Autonomy: The Emperor’s New Clothes,” Aristotelian Society Supplementary Volume 77, no. 1 (2003): 110. 5.  O’Neill, “Autonomy: The Emperor’s New Clothes,” 114. 6.  Catriona Mackenzie and Natalie Stoljar, “Introduction: Autonomy Reconfigured,” in Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self, eds. Catriona Mackenzie, Natalie Stoljar, and Natalie Stoljar (New York: Oxford University Press, 2000); John Christman, “Relational Autonomy and the Social Dynamics of Paternalism,” Ethical Theory and Moral Practice 17, no. 3 (2014): 369–82. 7.  John Stuart Mill, On Liberty, Utilitarianism and Other Essays (Oxford, UK: Oxford University Press, 1991). 8.  Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 1st ed. (New York: Oxford University Press, 1979), 59.

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9.  Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 3rd ed. (New York: Oxford University Press, 1989), 72. 10. Lisa Dive and Ainsley J. Newson, “Reconceptualizing Autonomy for Bioethics,” Kennedy Institute of Ethics Journal 28, no. 2 (2018): 171–203. 11.  Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 7th ed. (New York: Oxford University Press, 2013). 12. Eric Matthews, “Autonomy and the Psychiatric Patient,” Journal of Applied Philosophy 17, no. 1 (2000): 59–70. 13.  See chapter 5 on “Substituted Decision-Making” in this volume. 14. Beauchamp and Childress, Principles of Biomedical Ethics, 2013, 107. 15.  Stanley I. Benn, “Freedom and Persuasion,” Australasian Journal of Philosophy 45, no. 3 (1967): 259–75. 16.  Stanley I. Benn, “Freedom, Autonomy and the Concept of a Person,” Proceedings of the Aristotelian Society 76 (1976): 124. 17.  Harry G. Frankfurt, “Freedom of the Will and the Concept of a Person,” The Journal of Philosophy 68, no. 1 (1971): 5–20. 18.  Gerald Dworkin, The Theory and Practice of Autonomy (Cambridge: Cambridge University Press, 1988). 19. John Philip Christman, The Inner Citadel: Essays on Individual Autonomy (Oxford: Oxford University Press, 1989). 20.  Onora O’Neill, Autonomy and Trust in Bioethics (Cambridge: Cambridge University Press, 2002). 21. Beauchamp and Childress, Principles of Biomedical Ethics, 2013. 22. Christman, The Inner Citadel: Essays on Individual Autonomy; Dworkin, The Theory and Practice of Autonomy; Kathryn MacKay, “Authenticity and Normative Authority: Addressing the Agency Dilemma with Values of One’s Own,” Journal of Social Philosophy 51, no. 3 (2020): 349–70, https://doi.org/10.1111/josp.12309; Natalie Stoljar, “Theories of Autonomy,” in Principles of Health Care Ethics, Second Edition, eds. Richard E. Ashcroft et al. (Chichester, UK: Wiley & Sons, 2007), 11–17. 23. Jørgen Husted, “Autonomy and a Right Not to Know,” in The Right to Know and the Right Not to Know: Genetic Privacy and Responsibility, eds. Ruth Chadwick, Mairi Levitt, and Darren Shickle, 2nd ed. (Cambridge: Cambridge University Press, 2014). 24. John Christman and Joel Anderson, Autonomy and the Challenges to Liberalism: New Essays (Cambridge: Cambridge University Press, 2005). 25.  See, for example, Mackenzie and Stoljar, “Introduction: Autonomy Reconfigured”; Anne Donchin, “Autonomy and Interdependence: Quandaries in Genetic Decision Making,” in Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self, eds. Catriona

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Mackenzie and Natalie Stoljar (New York: Oxford University Press, 2000), 236–58; Susan Dodds, “Choice and Control in Feminist Bioethics,” in Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self, eds. Catriona Mackenzie and Natalie Stoljar (New York: Oxford University Press, 2000), 213–35. 26.  Donchin, “Autonomy and Interdependence: Quandaries in Genetic Decision Making.” 27. Neil C. Manson and Onora O’Neill, Rethinking Informed Consent in Bioethics (Cambridge: Cambridge University Press, 2007). 28. Rebecca L. Walker, “Medical Ethics Needs a New View of Autonomy,” The Journal of Medicine and Philosophy 33, no. 6 (2008): 594–608. 29.  Paul Benson, “Autonomy and Oppressive Socialization,” Social Theory and Practice 17, no. 3 (1991): 385–408. 30.  Fabian Freyenhagen and Tom O’Shea, “Hidden Substance: Mental Disorder as a Challenge to Normatively Neutral Accounts of Autonomy,” International Journal of Law in Context 9, no. 1 (March 2013): 53–70, https://doi .org/10.1017/S1744552312000481. 31.  Susan Wolf, Freedom within Reason (Oxford: Oxford University Press, 1990). 32.  Joseph Raz, The Morality of Freedom (Oxford: Oxford University Press, 2009). 33.  Raanan Gillon, “Ethics Needs Principles—Four Can Encompass the Rest—and Respect for Autonomy Should Be ‘First among Equals,’” Journal of Medical Ethics 29, no. 5 (2003): 307–12. 34. Sarah Conly, Against Autonomy (New York: Cambridge University Press, 2012). 35. Neil Levy, “Forced to Be Free? Increasing Patient Autonomy by Constraining It,” Journal of Medical Ethics 40 (2014): 293–300. 36. Martha C. Nussbaum, “Human Functioning and Social Justice: In Defense of Aristotelian Essentialism,” Political Theory 20, no. 2 (May 1, 1992): 202–46, https://doi .org/10.1177/0090591792020002002. 37. James Stacey Taylor, ed., Personal Autonomy: New Essays on Personal Autonomy and Its Role in Contemporary Moral Philosophy (Cambridge: Cambridge University Press, 2005), https://doi.org/10.1017/CBO9780511614194. 38.  For more on responsibility and determinism see, for example, Peter Strawson, “Freedom and Resentment,” in Perspectives on Moral Responsibility, eds. John Martin Fischer and Mark Ravizza (Ithaca, NY: Cornell University Press, 1993); Matthew Talbert, “Moral Responsibility,” in Stanford Encyclopedia of Philosophy, 2019, https://plato.stanford .edu/archives/win2019/entries/moral-responsibility/. 39.  Aristotle, “Nicomachean Ethics,” trans. Roger Crisp, Higher Education from Cambridge University Press (Cambridge: Cambridge University Press, November 20, 2014), bk. 3.1, 1109b35, https://doi.org/10.1017 /CBO9781139600514.

40.  Hanna Pickard, “Responsibility in Healthcare: What’s the Point?,” Journal of Medical Ethics 45, no. 10 (October 2019): 650–51, https://doi.org/10.1136/medethics-2019-105829. 41.  Heidi Malm et al., “Ethics, Pandemics, and the Duty to Treat,” The American Journal of Bioethics 8, no. 8 (September 23, 2008): 4–19, https://doi.org/10.1080/15265160802317974. 42. Angus Dawson, “Professional, Civic, and Personal Obligations in Public Health Emergency Planning and Response,” in Emergency Ethics: Public Health Preparedness and Response, eds. Bruce Jennings et al. (New York: Oxford University Press, 2016). 43. Rebecca C. H. Brown, Hannah Maslen, and Julian Savulescu, “Against Moral Responsibilisation of Health:

Prudential Responsibility and Health Promotion,” Public Health Ethics, 2019. 44.  Manson and O’Neill, Rethinking Informed Consent in Bioethics. 45.  Rebecca C. H. Brown and Julian Savulescu, “Responsibility in Healthcare across Time and Agents,” Journal of Medical Ethics 45, no. 10 (October 2019): 636–44, https:// doi.org/10.1136/medethics-2019-105382. 46. Johanna Ahola-Launonen, “The Evolving Idea of Social Responsibility in Bioethics: A Welcome Trend,” Cambridge Quarterly of Healthcare Ethics 24, no. 2 (April 2015): 204–13, https://doi.org/10.1017/S0963180114000516.

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CHAPTER 7

Paternalism Jason Hanna

I

t is widely agreed that medical professionals have obligations to benefit their patients. The Hippocratic Oath includes the following pledge: “I will use those dietary regimens which will benefit my patients according to my greatest ability and judgment, and I will do no harm or injustice to them.”1 In some cases, medical practitioners can benefit patients by imposing unwanted treatment on them. In other cases, medical practitioners may withhold hard truths, such as devastating diagnoses, to avoid harming or upsetting patients. Traditionally, medical practitioners have been largely free to act on their own judgments of their patients’ interests. In the second half of the twentieth century, however, most medical ethicists moved away from this paternalistic conception of the practitioner–patient relationship. Instead, medical ethics came to emphasize the importance of autonomy. Thus, Norman Daniels observes that in its early days medical ethics focused on real-life “modern morality plays” in which “the villain, the paternalistic doctor, threatens Everyman’s autonomy, until he is rescued by the good Doctor Informed Consent.”2 Opposition to paternalism has arguably been a cornerstone of contemporary biomedical ethics. Nonetheless, virtually everyone accepts that paternalism is sometimes justified. Few object to

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paternalistic intervention on behalf of young children. Most also accept paternalistic intervention on behalf of adults deemed incapable of making their own choices due to impairments such as serious psychiatric disorders, dementia, intoxication, or temporarily clouded judgment. Moreover, although biomedical ethicists have been wary of paternalistic coercion and deception, paternalism can operate through other means, including incentives and non-deceptive manipulation.3 To determine when paternalism is justified, we need to understand what paternalism is and why, if at all, it is objectionable. Ethicists continue to debate these issues. This chapter provides an overview of the moral problems raised by medical paternalism. It begins by examining several attempts to define paternalism. It then considers three prominent antipaternalist arguments: that paternalistic intervention is likely to be counterproductive (consequentialist antipaternalism), that people have autonomy rights to control their own bodies and lives (sovereignty-based antipaternalism), and that paternalism is motivated by disrespectful beliefs or attitudes (motive-based antipaternalism). Each of these views, the chapter suggests, faces a number of difficulties. The chapter concludes that there may be no single “blanket” objection to paternalism.

D EFINING PAT E R NA L I SM Many common definitions of paternalism include one component that focuses on the effect of the paternalist agent’s behavior and another component that focuses on the paternalist agent’s motives. According to an influential definition by Gerald Dworkin, paternalism is, roughly, “the interference with a person’s liberty of action justified by reasons referring exclusively to the welfare, good, happiness, needs, interests, or values of the person being coerced.”4 As Dworkin came to recognize, however, this definition is inadequate.5 In what is perhaps the paradigm case of medical paternalism, a doctor fails to disclose a cancer diagnosis for fear that doing so will upset the patient. Such behavior does not seem to inhibit the patient’s liberty of action. To accommodate this point, some ethicists have held that paternalism must involve limitations on freedom of action or freedom of information.6 Some paternalistic behavior, however, does not seem to limit freedom at all. For instance, the owner of a cafeteria may place healthier foods near the front of the buffet line, since people tend to take more of whichever foods they encounter first.7 Such behavior is an example of a paternalistic “nudge”: it aims to influence a person’s choices, for that person’s own good, without limiting liberty or making any options significantly more costly. One might respond to this sort of case by arguing that paternalism involves interference with autonomy, rather than freedom, and that nudges can violate, undermine, or disrespect autonomy.8 Unfortunately, however, autonomy is itself a highly contested concept, interpreted in different ways by different theorists. Consider now the motivational component of paternalism. Seana Shiffrin holds that if A treats B paternalistically, A’s behavior “must be undertaken on the grounds that compared to B’s judgment or agency with respect to [B’s] interests or other matters [that legitimately lie within B’s control], A regards her judgment or agency to be (or as likely to be), in some respect, superior to B’s.”9 Daniel Groll has suggested that to treat others paternalistically is to treat them in a way that is motivated “solely or

overridingly by consideration of what is good” for them.10 The view that the agent’s motives are partly definitive of paternalism is less straightforward than it may initially appear. Some common debates over paternalism concern whether certain acts and policies are paternalistic at all. For instance, are high excise taxes on cigarettes paternalistic? Some defenders of cigarette taxes claim that they are not paternalistic. In their view, such taxes are (or might be) justified because they are necessary to compensate the public for the costs of treating smoking-related illnesses.11 Others claim, however, that such policies are paternalistic. They may argue that smokers who prefer access to cheaper cigarettes can waive their rights to health care. (The view that smokers cannot waive their rights to health care may itself be paternalistic.12) I will not weigh in on this debate. The important point for present purposes is that, according to some definitions of paternalism, we can determine whether tobacco taxes are paternalistic largely by examining the actual motives of those who enact, enforce, or support the relevant policies. When people debate whether tobacco taxes are paternalistic, however, they are not ultimately debating the actual motivations of those responsible for the taxes. They are instead engaged in a moral debate about the possible justifications for such policies. The foregoing discussion may cast doubt on the prospects for developing an adequate definition of paternalism. Perhaps, however, we do not need a precise definition of paternalistic behavior. There are two points worth noting here. First, some antipaternalists do not argue directly against a certain kind of behavior. Instead, they reject a certain sort of justification for intervention. In On Liberty, J. S. Mill developed what is often considered the canonical antipaternalist view. Mill never used the term “paternalism,” however. He defended a principle according to which “the sole end for which mankind are warranted, individually or collectively, in interfering with the liberty of action of any of their number, is self-protection.” According to Mill’s view, a person’s “own good, either physical or moral, is not a sufficient warrant” for exercising power over that person.13 On the most natural interpretation, Mill is not directly condemning a type of Pate r nalism 

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action. He is rather arguing that a certain type of reason is insufficient to justify restrictions on liberty.14 Second, some putative definitions of paternalism are not intended to pick out a class of behavior characterized in morally neutral terms.15 Instead, they aim to pick out behavior that is morally objectionable in the way supposedly characteristic of paternalism. Such definitions call for normative assessment. To succeed, they must identify morally relevant features shared by acts and policies that strike many people as wrongly paternalistic. In asking whether and when paternalism can be justified, we may not be asking about the moral status of a certain sort of behavior that can be straightforwardly defined. Instead, we may be asking about the conditions under which a person’s own good is a valid reason—and, ultimately, a sufficient reason—for action (or omission) that affects that person. In considering these questions, it will be useful to examine some of the most common arguments against paternalism.

CO NSE QUE NT I A L I ST ANTIPATERN A L I SM Many critics have argued that paternalistically motivated restrictions on freedom of action or information are likely to be wrong on purely consequentialist grounds, since they are likely to be counterproductive.16 Suppose, for instance, that after a patient loses consciousness, a doctor must decide whether to perform a medically recommended procedure that the patient has consistently, and competently, refused (because of concerns about its side effects, say). The doctor may be justified in believing that the procedure would be in the patient’s medical or health-related interests. Whether intervention would serve the patient’s overall interests, however, is a normative question.17 Answering it would require one to determine which of the patient’s interests are most important. Because (competent) patients are best acquainted with their own preferences, goals, and values, there is a strong presumption that they are in a better position than their doctors to determine what best serves their interests. Moreover, some critics have worried 76 

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that paternalism often has unintended consequences. If the public learns that medical professionals have performed tests or procedures without securing informed consent, some people may be more reluctant to visit their doctors. Likewise, practitioners who deceive their patients may erode trust in the medical establishment, thereby worsening health outcomes over the long run. Consequentialist antipaternalism confronts a number of challenges, however. The most fundamental is this: if our only objection to paternalistic interference is that it is usually unsuccessful or counterproductive, then we ought to support genuinely beneficial paternalistic interference. Indeed, a simple consequentialist view, according to which we are morally obligated to produce the best overall consequences, entails that paternalism is morally required when it would maximize the good. Unless it can be shown that paternalistic interference always has suboptimal consequences, consequentialism would not seem to justify the strongly antipaternalistic orientation common in medical ethics. To be sure, even if medical paternalism is sometimes justified, it may usually be counterproductive, in which case we arguably ought to regard it with suspicion. Nonetheless, the claim that paternalism is usually counterproductive may not resolve some of the moral problems that medical practitioners face. Imagine, for instance, that before a routine procedure, a young adult Jehovah’s Witness informs the surgeon not to provide a blood transfusion, even in the extremely unlikely event that it becomes medically necessary. Unfortunately, however, there are unexpected complications after the patient goes under general anesthesia, and the surgeon must now decide whether to administer a transfusion that would likely save the patient’s life. Such a practitioner might believe—justifiably, it would seem—that intervention would benefit the patient. The practitioner might then ask whether intervention is morally permissible. To answer only that paternalistic intervention is usually unjustified, because it is usually counterproductive, seems to sidestep the question about whether intervention is justified in the particular case at hand. Of course, one might suggest that even if intervention

would benefit the patient, it might have other undesirable long-term effects. In the absence of further argument, however, this suggestion seems to rest on mere speculation. It is often difficult to predict the long-term, diffuse consequences of one’s behavior. Though paternalistic interference may sometimes have unexpected bad consequences, it may also sometimes have unexpected good consequences. Perhaps there are deeper grounds for consequentialist suspicion of paternalism, however. Some might hold that paternalistically motivated interference is likely to be counterproductive not (merely) because well-intentioned agents make errors in judgment, but rather (or also) because well-being is radically subjective. According to some theories of well-being, how well one fares is determined by the extent to which one’s desires are fulfilled. When someone makes a choice that I judge imprudent, my judgment may suggest only that, given my desires or aims, my interests would be frustrated if I were to make a similar choice. The other person, of course, may have very different desires and aims, in which case there may be little reason to think that paternalistic intervention would benefit that person. To illustrate, suppose that Wendy, a dedicated marathon runner, will soon die unless one of her legs is amputated. She refuses the amputation and tells her doctor that she does not want to live without two legs. Most of us would not make this choice. But perhaps it is prudent for Wendy, given the high value she places on running. This antipaternalist appeal to the subjectivity of well-being faces at least two challenges. First, it is difficult to integrate with other judgments many people are inclined to make about public health. Most people seem to think that drug use and obesity are public health problems. It is difficult to make sense of such judgments, however, unless we suppose that drug use and overeating are imprudent and thus that we can sometimes tell when people are acting contrary to their own interests. Indeed, the antipaternalistic orientation often applied to clinical practice may be in tension with the paternalistic orientation often adopted in public health. Second, most subjective theories of wellbeing allow that people—including even competent

adults—can be mistaken about their interests. Many such accounts hold that what makes one’s life go best is the maximal fulfillment of one’s ideal desires, or the desires one would have after calm deliberation on the relevant facts.18 Even if one’s choice maximizes the fulfillment of one’s actual, current desires, it may not align with one’s ideal desires. Thus, to return to Wendy, our marathon runner, a physician may have good reason, founded on experience, to expect that her desires will change if the surgery is performed. In that case, intervention may best fulfill her ideal desires, and it may be difficult to argue that performing the surgery is wrong on consequentialist grounds. Of course, it may still be wrong for other reasons, considered in the following sections.

AU TO N O M Y A N D S OV E R E I G N T YBA S E D A N T I PAT E R N A L I S M According to many antipaternalists, the consequentialist arguments discussed in the preceding section, though sometimes relevant, are beside the central point. The most common concern about paternalism is that it conflicts with the value of autonomy. There are several different conceptions of autonomy, however. This chapter provides only a brief sketch. “Autonomy” has been used to refer to a character ideal that one might achieve, to a set of personal capacities that make this ideal possible, and to a moral right (or bundle of moral rights).19 Steven Wall describes the “character ideal” of autonomy as that of “people charting their own course through life, fashioning their character by self-consciously choosing projects and taking up commitments from a wide range of eligible alternatives, and making something out of their lives according to their own understanding of what is valuable and worth doing.”20 People who are coerced into working in a certain profession, or whose marital arrangements are chosen for them by the state, probably do not live very autonomously, in this sense. Nonetheless, such people might have the capacity of autonomy—that is, the internal ability that is necessary to chart a self-chosen course through life. Moreover, regardless of whether one actually Pate r nalism 

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achieves autonomy as an ideal, one might have autonomy rights to make certain choices for oneself. Of course, these different conceptions of autonomy may be related. Perhaps one has autonomy rights only if one possesses the internal capacities necessary to live autonomously. Just as there are different conceptions of autonomy, there are different ways to understand the supposed tension between paternalism and autonomy. According to one common objection, paternalism violates autonomy. This complaint most naturally coheres with a conception of autonomy as a right (or package of rights), since rights can be violated. According to a second objection, paternalism disrespects the capacities or traits that enable people to achieve the ideal of autonomous living. This concern may differ from the first. Suppose that an employer or government agency offers people cash prizes as incentives to exercise. Arguably, such paternalistic incentives would not violate autonomy rights, since they do not impose unwanted benefits on anyone. The incentive scheme, however, may express disrespect for autonomy—say, by sending the message that those targeted by the incentives are too lazy or imprudent to make healthy choices on their own. The remainder of this section focuses on the complaint that paternalism violates autonomy rights. The next section considers the objection that paternalism in some other way disrespects the capacities or traits involved in autonomy. In the literature on paternalism, the notion of an autonomy right is perhaps best developed by Joel Feinberg. Feinberg relies on a “political analogy,” according to which autonomy is to the individual what sovereignty is to the state. Sovereign states hold “territory under a kind of unconditional and absolute jurisdiction.”21 Likewise, Feinberg argues, sovereign persons have absolute jurisdiction within the domain of self-regarding action, including action that affects their own bodies (without infringing the rights of others). We may refer to Feinberg’s position as “sovereignty-based antipaternalism.” Feinberg is opposed mainly to paternalistic rationales for criminal laws. Nonetheless, the types of medical paternalism that many people find objectionable—for 78 

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instance, the imposition of treatment to which the patient does not consent—may also violate a right of self-sovereignty. As Feinberg recognizes, however, not everyone qualifies as self-sovereign. Because children lack the capacities necessary to live autonomously, they are commonly thought to lack the rights of self-sovereignty (or, more precisely, to acquire such rights gradually, as they develop the relevant capacities). Moreover, generally competent adults are sometimes gripped by temporary impairments that lead them to act out of character or contrary to their considered judgments of value. Feinberg ultimately argues that rights of self-sovereignty protect only voluntary choices. People make perfectly or maximally voluntary choices when they freely and carefully deliberate on all relevant facts, in a calm state of mind conducive to clear thinking. Of course, few choices are maximally voluntary. Many choices are affected, to varying degrees, by “compulsion, misinformation, clouded judgment (as for example from alcohol), or impaired reasoning,” not to mention impulsivity, time pressures, and carelessness.22 On Feinberg’s view, self-regarding choices are covered by the principle of self-sovereignty so long as they are sufficiently voluntary. Whether a choice is sufficiently voluntary depends not only on the decision-maker’s state of mind but also on how harmful or imprudent the choice is: all else equal, the riskier the self-regarding choice, the higher the standard of voluntariness.23 Feinberg refers to intervention in substantially voluntary self-regarding choices as hard paternalism. Intervention in nonvoluntary (i.e., insufficiently voluntary) choices is soft paternalism. Many philosophers follow Feinberg in holding that soft paternalism does not violate autonomy.24 The hard/soft distinction fits poorly with the political analogy, however. A state’s sovereignty prohibits outside interference in its rash and poorly informed domestic policies. The United States may not intervene in Canada’s domestic affairs even if Canada has set its fiscal policy on the basis of demonstrably mistaken economic forecasts.25 Yet virtually all antipaternalists believe that soft paternalism on behalf of ill-informed patients can be

permissible. It would appear, then, that there is a striking difference between political sovereignty and personal autonomy: while political sovereignty protects poorly informed or substantially impaired political decisions, personal sovereignty does not protect poorly informed or substantially impaired personal decisions.26 The concern here is that absolute autonomy rights may protect nearly all self-regarding choices, even those that are “low” on the scale of voluntariness. It might be tempting to argue that this problem is merely a product of Feinberg’s political analogy, which, like all analogies, must give out at some point. The concern that autonomy rights protect too much cannot be so easily dismissed, however. Many medical ethicists do seem to think that individual rights protect some ill-informed and impaired choices. Suppose that a medical researcher asks a potential research subject if she would be interested in entering a clinical trial. As the researcher knows, the potential subject would normally be eager to join such a trial. Today, however, due to a temporary impairment— say, a bout of depression that blinds the potential subject to her usual values—she declines to take part in the study. Even if the person’s choice is low on the scale of voluntariness, most ethicists would hold that it is wrong to enroll her in the trial without her permission. Indeed, many ethicists would presumably hold that it is wrong to enroll her for reasons having to do with her autonomy rights. If such rights extend to substantially impaired choices in this sort of case, however, we might wonder whether they also extend to substantially impaired choices about one’s own medical care. A further concern about Feinberg’s view is that its proponents may lack a compelling rebuttal to an alternative “balancing strategy.” According to the balancing strategy, “the prevention of the evil of selfharm carries some defeasible weight in determinations about the permissibility” of intervention.27 On this view, we must balance, on a case-by-case basis, the (defeasible) reasons we have to prevent self-harm with the (defeasible) reasons we have to respect others’ self-regarding choices. Feinberg rejects the balancing strategy.28 Nonetheless, his position may come quite

close to it, since he allows that severity of harm is relevant in fixing the threshold that a choice must meet to qualify as voluntary. To appreciate this concern, imagine that a patient who is moderately impaired by temporary depression makes a severely imprudent choice likely to result in death or permanent disability. Feinberg may argue that soft paternalistic intervention is justified, since the patient’s moderately impaired choice does not meet an appropriately high threshold of voluntariness. Proponents of the balancing strategy might hold that intervention is justified on the straightforwardly (hard) paternalistic grounds that it would secure a great gain in well-being at comparatively little cost to other values. Ultimately, however, it is unclear just how much separates these two claims, since each allows that harm plays a significant role in justifying intervention. According to the balancing view, the fact that the patient’s choice would cause severe self-regarding harm is directly relevant in justifying intervention. According to Feinberg’s view, the fact that the patient’s choice would cause severe self-regarding harm is indirectly relevant in justifying intervention, since it increases the threshold of voluntariness. Indeed, we may worry that Feinberg’s view involves a sort of “antipaternalist laundering”: it rejects (hard) paternalism only because it adopts a conception of voluntariness flexible enough to permit much of the intervention that would be endorsed by a plausible version of the balancing strategy. In some cases, the balancing strategy may seem more honest in recognizing the potential conflict between beneficence and self-determination.

M OT I V E -BA S E D A N T I PAT E R N A L I S M As noted earlier, even when paternalism does not violate autonomy rights, it may disrespect the deliberative and agential capacities that enable people to chart their own courses through life. Recently, a number of ethicists have argued that paternalism is objectionable because it is motivated by negative or demeaning judgments about others and their capacities.29 Seana Shiffrin argues that this motive and the disrespectful attitudes it manifests are “central to Pate r nalism 

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accounting for why paternalism delivers a special sort of insult to competent, autonomous agents.”30 In a similar vein, Jonathan Quong argues that paternalism is objectionable insofar as it “involves one person or group denying that another person or group has the necessary capacity, in a given context . . . to plan, revise, and rationally pursue their conception of the good.”31 Daniel Groll suggests that “the key question . . . for judging whether an instance of paternalism is (im)permissible turns on whether the paternalist is (partly) moved by the belief that her judgment is needed as a check or possible corrective on the judgment of the paternalized subject.”32 Such views support a position that we can call motivebased antipaternalism. There are a number of reasons for thinking that paternalistically motivated behavior might be disrespectful. First, paternalism often seems insulting to the paternalized subject. People tend to resent attempts to interfere with their lives for their own good. Of course, people may resent all sorts of otherwise innocuous behavior. But this observation takes us to a second point: apart from anyone’s subjective feelings of insult, paternalistically motivated behavior may be disrespectful in a more objective sense. A loose analogy will be useful here. It seems disrespectful for a person to dance on a grave not only because doing so would offend others but also because it demonstrates a failure to recognize the value of the deceased person. Likewise, if one’s attempt to benefit another person is motivated by the judgment that this other person would otherwise behave imprudently, perhaps one demonstrates a failure to respond appropriately to the value of the person’s deliberative or agential capacities. Third, and relatedly, paternalistic behavior may often express something insulting. Medical paternalism might send the message that a certain patient is not to be trusted, or that some patients are too stupid to make their own decisions. Perhaps the problem with paternalism is not only what it does to its targets but also what it conveys, perhaps publicly, about them.33 Motive-based antipaternalism may help explain why many object to the “paternalistic model” of the

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physician–patient relationship. According to this model, physicians ought to encourage patients to opt for the medical care that they, the physicians, deem best. Of course, physicians may seek to influence patients even without limiting their liberty. Even so, they may disrespect autonomy if they seek to influence patients in ways that “occlude” opportunities for patients “to canvass and weigh reasons” on their own, independent of a physician’s overbearing influence.34 To be clear, motive-based antipaternalists need not hold that paternalism, as they understand it, is always wrong. They claim to have identified only a presumptive or pro tanto objection to paternalistically motivated behavior. Motive-based antipaternalism faces a number of challenges, however. Arguably, practitioners should proportion their beliefs about the likelihood that a patient will choose imprudently to the available evidence that the patient will choose imprudently. As David Enoch observes, “Whether the state should make alcohol unavailable to the alcoholic is a complicated moral and political question, but what we should believe about the likely results of alternative policies here is an epistemic question, fully answered by the evidence, not by moral considerations about the alcoholic’s dignity.”35 Likewise, respect for autonomy should not require a practitioner to hold unjustifiably optimistic beliefs about a patient’s decision-making abilities. A critic might reply that practitioners are subject to criticism not merely for believing that their patients are likely to make poor choices but rather for acting on such beliefs. Such a response, however, only pushes the problem back, for the motive-based antipaternalist must now explain why it would be morally objectionable for a practitioner to act on epistemically justified beliefs. Motive-based antipaternalism faces a further concern in medical contexts. Many people find it wholly acceptable for medical professionals to take account of competent adults’ epistemic, deliberative, and agential limitations. For instance, when practitioners procure informed consent, they must often decide precisely how to inform their patients. Thus, a physician might choose to present the risks of a

procedure in terms of a frequency format (e.g., a certain outcome affects one in five patients) rather than a probability format (e.g., a certain outcome affects 20% of patients) if there is evidence that patients can better understand or appreciate information presented in terms of the frequency format. Likewise, if a physician justifiably believes that a patient would imprudently neglect to read an informational brochure about the risks of some procedure, the physician might choose to provide relevant information verbally, during a meeting with the patient. In treating gullible or uneducated patients, a physician may seek to counter poorly founded “conspiracy theories” about the possible effects of a certain treatment, even if the physician would not take similar steps in treating other patients. In these sorts of cases, physicians arguably have a responsibility to take account of their patients’ deficiencies and limitations when deciding how to provide information. If physicians were to treat all patients in the way they treat their most sophisticated or prudent patients, they may further disadvantage patients who are already among the most vulnerable. Notice, however, that a physician who tailors a disclosure to account for a patient’s suboptimal reasoning or deliberative abilities thereby expresses distrust in the patient. If the physician’s behavior is guided by a (reasonable) belief that the patient is deficient, relative to others, in the abilities to understand risks, to thoughtfully consider alternative treatment options, or to avoid misinformation, then the physician’s motivation would appear to be paternalistic. Motive-based antipaternalism would then seem to imply that such a physician has acted objectionably, to at least some extent. This verdict may be hard to swallow. One central question about motive-based antipaternalism, then, is whether it is too broad. Like Feinberg’s sovereignty-based view, motive-based antipaternalism can account for the common judgment that it is typically wrong for physicians to force treatments on their patients. It may also apply to a range of behavior that seems morally innocuous, however.

CO N C LU S I O N As philosophical debate over paternalism continues, there are two points worth bearing in mind. First, there may be no single, “blanket” objection to paternalism. Certain types of paternalistic behavior, such as coercion, may be objectionable, even if other types of paternalistic behavior, such as incentives, are not. Moreover, even when paternalism is presumptively objectionable, it might be permissible, all things considered. As the balancing strategy allows, paternalism that limits liberty may be justified if it secures a large enough gain in well-being. Second, concerns about medical paternalism may sometimes have more to do with the “medical” part than the “paternalism” part. Perhaps medical professionals should avoid certain interventions for reasons that have little to do with their apparently paternalistic character. To illustrate, compare two cases in which a doctor can surreptitiously administer a safe and effective vaccine, against a patient’s wishes, while the patient is under general anesthesia for an unrelated procedure. In the first case, the vaccine would protect the patient from a noncontagious but serious ailment, such as tetanus, that the patient is at high risk of contracting. In the second case, the vaccine would protect the patient from a highly transmissible disease that the patient may contract and spread to others who are more vulnerable. I suspect that many people who object to the doctor’s intervention in the first case would likewise object to the doctor’s intervention in the second. Notice, however, that intervention in the second case is not obviously paternalistic: in that case, the doctor may desire only to protect third parties, and the strongest justification for the doctor’s behavior may appeal to the social benefits of vaccination. If one holds that intervention is wrong in both cases, one’s judgment may not be best explained by a specifically antipaternalist principle. Instead, one might judge that medical practitioners simply should not have certain types of authority, regardless of whether their motives are paternalistic or their patients’ choices are purely self-regarding. One may worry, for instance, that if

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practitioners had the authority to force treatment on competent patients, trust in the medical system would erode. Alternatively, perhaps some decisions ought to be made by officials who can be held publicly accountable in ways that medical practitioners, acting on their own, cannot be. Medical paternalism may be wrong, when it is, for a variety of reasons. Many critics have attempted (i) to explain what is generally wrong with paternalism and then (ii) to reconcile their proposed explanations with the commonsense judgment that paternalistic intervention is sometimes permissible.36 Consequentialist antipaternalism, sovereignty-based antipaternalism, and motive-based antipaternalism are different attempts to fulfill the first of these aims. Though each of these views is prominent in the literature, I have suggested that each faces serious challenges. Perhaps there is no single, unified answer to the question: “What is wrong with paternalism?”37

N OTE S 1.  “Greek Medicine,” National Institutes of Health, accessed October 14, 2021, https://www.nlm.nih.gov /hmd/greek/greek_oath.html. 2. Norman Daniels, Just Health Care (New York: Cambridge University Press, 1985), 1. 3.  “Nudging” strategies are often regarded as paternalistic manipulation. See chapter 15 of this volume. See also Cass Sunstein and Richard Thaler, “Libertarian Paternalism Is Not an Oxymoron,” University of Chicago Law Review 70, no. 4 (2003): 1159–202; Richard Thaler and Cass Sunstein, Nudge: Improving Decisions about Health, Wealth, and Happiness (New Haven: Yale University Press, 2008); J. D. Trout, “Paternalism and Cognitive Bias,” Law and Philosophy 24, no. 4 (2005): 393–434; Shlomo Cohen, “Nudging and Informed Consent,” The American Journal of Bioethics 13, no. 6 (2013): 3–11; J. S. Blumenthal-Barby and Hadley Burroughs, “Seeking Better Health Care Outcomes: The Ethics of Using the ‘Nudge,’” The American Journal of Bioethics 12, no. 2 (2012): 1–10; and Moti Gorin, “Paternalistic Manipulation,” in The Routledge Handbook of the Philosophy of Paternalism, eds. Kalle Grill and Jason Hanna (New York: Routledge, 2018), 236–47. 4.  Gerald Dworkin, “Paternalism,” in Paternalism, ed. Rolf Sartorius (Minneapolis: University of Minnesota Press, 1983), 20.

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5.  Gerald Dworkin, “Paternalism: Some Second Thoughts,” in Paternalism, ed. Rolf Sartorius (Minneapolis: University of Minnesota Press, 1983), 105–6. 6.  Allen Buchanan, “Medical Paternalism,” in Paternalism, ed. Rolf Sartorius (Minneapolis: University of Minnesota Press, 1983), 62. 7.  For this example, see Thaler and Sunstein, Nudge, 1–3. 8.  See Gerald Dworkin, “Paternalism,” in The Stanford Encyclopedia of Philosophy ed. Edward N. Zalta (Fall 2020 Edition), accessed October 14, 2021, https://plato.stanford. edu/archives/fall2020/entries/paternalism/. 9.  Seana Shiffrin, “Paternalism, Unconscionability Doctrine, and Accommodation,” Philosophy & Public Affairs 29, no. 3 (2000): 218. 10.  Daniel Groll, “Medical Paternalism—Part I,” Philosophy Compass 9, no. 3 (2014): 191. 11.  For a suggestion of such an argument, see Elizabeth Anderson, “What Is the Point of Equality?,” Ethics 109, no. 2 (1999): 328–31. 12. See Søren Flinch Midtgaard, “Non-Renounceable Rights, Paternalism, and Autonomy,” Utilitas 27, no. 3 (2015): 353. 13.  J. S. Mill, “On Liberty,” in The Collected Works of John Stuart Mill, vol. XVIII, ed. J. M. Robson (Toronto and London: University of Toronto Press and Routledge & Kegan Paul, 1985), 223, https://oll.libertyfund.org/title/robson -the-collected-works-of-john-stuart-mill-volume-xviii-es says-on-politics-and-society-part-i#lf0223-18_label_643. 14.  For a similar understanding of antipaternalism, see Kalle Grill, “Antipaternalism as a Filter on Reasons,” in New Perspectives on Paternalism and Health Care, ed. Thomas Schramme (New York: Springer, 2015), 47–63. 15.  Shiffrin, “Paternalism, Unconscionability Doctrine, and Accommodation,” 218. 16.  Indeed, Mill disavows “any advantage which could be derived to [his] argument from the idea of abstract right, as a thing independent of utility.” See Mill, “On Liberty,” 224. 17.  See Buchanan, “Medical Paternalism,” 69. 18.  For relevant discussion, see David Sobel, “Subjectivism and Idealization,” Ethics 119, no. 2 (2009): 336–52. 19.  Feinberg offers a more expansive typology, noting that autonomy can be a “capacity,” a “condition,” an “ideal,” or a “right.” Joel Feinberg, Harm to Self, vol. 3 of The Moral Limits of the Criminal Law (New York: Oxford University Press, 1986), chap. 18. 20. Steven Wall, Liberalism, Perfectionism, and Restraint (New York: Cambridge University Press, 1998), 128. 21. Feinberg, Harm to Self, 49. 22. Feinberg, Harm to Self, 104. 23. Feinberg, Harm to Self, 117–24. 24. See, for example, Tom Beauchamp, “The Concept of Paternalism in Biomedical Ethics,” Jahrbuch für Wissenschaft und Ethik 14, no. 1 (2009): 82–83; and Heidi Malm,

“Feinberg’s Anti-Paternalism and the Balancing Strategy,” Legal Theory 11, no. 3 (2005): 204. 25.  For a similar point, see Richard Arneson, “Joel Feinberg and the Justification of Hard Paternalism,” Legal Theory 11, no. 3 (2005): 267–68. 26. For a similar argument deployed against libertarian self-ownership, see Steven Wall, “Self-Ownership and Paternalism,” Journal of Political Philosophy 17, no. 4 (2009): 399–417, esp. 404. 27.  Russ Shafer-Landau, “Liberalism and Paternalism,” Legal Theory 11, no. 3 (2005): 186. 28. Feinberg, Harm to Self, 60. 29.  For a definition on which paternalistic interference must be “motivated by a negative judgment” about the subject’s ability to make a good or prudent decision, see Jonathan Quong, Liberalism without Perfection (New York: Oxford University Press, 2011), 80. 30.  Shiffrin, “Paternalism, Unconscionability Doctrine, and Accommodation,” 220.

31.  Quong, Liberalism without Perfection, 101. 32.  Daniel Groll, “Paternalism, Respect, and the Will,” Ethics 122, no. 4 (2012): 718. 33. See Nicolas Cornell, “A Third Theory of Paternalism,” Michigan Law Review 113, no. 8 (2015): 1314–18. 34.  George Tsai, “Rational Persuasion as Paternalism,” Philosophy & Public Affairs 41, no. 1 (2014): 93. 35.  See David Enoch, “What’s Wrong with Paternalism: Autonomy, Belief, and Action,” Proceedings of the Aristotelian Society 116, no. 1 (2016): 27. 36.  For criticism of this project of reconciling antipaternalism with the justifiability of some apparently paternalistic policies, see Peter de Marneffe, “Avoiding Paternalism,” Philosophy & Public Affairs 34, no. 1 (2006): 68–94. 37. For the interested reader, I offer an extended discussion of the conceptual and normative issues surrounding paternalism in Jason Hanna, In Our Best Interest (New York: Oxford University Press, 2018).

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CHAPTER 8

Conscientious Objection in Health Care Udo Schuklenk

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istorically people who were conscientious objectors were individuals who “claimed the right to refuse to perform military service.”1 Oftentimes the motives driving these objections were of a religious or moral nature. Reportedly, the first conscientious objector was the son of a Roman army veteran named Maximilianus, who, in AD 295, refused to join the Roman army, citing his religious convictions, and who was duly executed.2 Pacifist Quakers, for instance, can look back on a long historical tradition of refusing to participate in military service. Many Quakers lived up to their religious convictions and paid a heavy price for refusing compulsory military service; they ended up in prison or were executed. They are by no means the only such group. A well-known individual who became a tragic historical example of this is, perhaps, the anti-fascist pacifist Hermann Stöhr, the leader of a branch of the German Protestant Church during the German Third Reich, who was executed in 1940, because he refused to join Nazi Germany’s army.3 His conscientious refusal to be conscripted into the German army led to his murder at the hands of the Nazis. It is arguable that the disproportionality of the punishments faced by these kinds of conscientious objectors, as well as their oftentimes understandable moral reasons, help explain why health care professionals today oftentimes receive a sympathetic hearing, despite the

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fact that an obvious morally significant dissimilarity exists between compulsory military service and a voluntarily chosen membership in a profession. “Conscientious objection,” as a subject, has historically been taught in faculties of health sciences all over the globe as a topic of etiquette rather than the highly contentious issue it has evolved into since the turn of the century. It was something that was taken for granted by health care professionals who expected that their conscience-based objections to the provision of particular services should take precedence over patients’ health care needs or patients’ rights to receive the services in question. This status quo has been called into question by ethicists, policy-makers, and in court cases that occurred across countries of the global north. A word on terminology is in order: “conscientious objection” is arguably a misnomer. What causes friction oftentimes is not that health care professionals object to the provision of particular contested services; rather, what causes friction is their decision to act on their objection and refuse to provide those services. Arguably “conscientious refusal” would be a more appropriate label for what is at issue, but “conscientious objection,” for various fraught historical reasons that will be described in the next paragraph, is the term used in most academic publications on the subject matter, as well as in court cases, and in the public policy domain.

CO NSCIEN CE Whether one is concerned about conscientious refusal or conscientious objection, it is important to get clarity on the meaning and importance of conscience. Part of the reason for this is, undoubtedly, and as has been argued by some writers, that living in conflict with what one’s conscience demands of one as a moral agent, is likely to cause a challenge to one’s integrity as a moral agent.4 On this understanding of conscience, conscience-based objections to the provision of professional services involve the very heart of what makes us moral agents.5 Different authors have focused on different aspects of what the morally salient features of conscience are. Daniel Sulmasy’s account seems to capture these features well.6 On this view, conscience acts both retrospectively and prospectively. Most people would have experienced it retrospectively, insofar as retroactive judgments about one’s past actions can— absent certain psychopathologies—trigger feelings of guilt or remorse. However, and perhaps more relevant in the context of this chapter, conscience arguably is also at work prospectively, insofar as such judgments can impact on how future actions that are considered by a moral agent are evaluated. Sulmasy correctly describes conscience as the conviction that we ought to act in accordance with our individual understanding of what our morality or our religion demands of us. It is worth keeping in mind that conscience “is not a faculty or source of moral knowledge.”7 As we will see, this poses challenges for arguments proposing that only those kinds of conscientious objections ought to be accommodated that are reasonable, if reasonable is understood as morally sound. Problems for the delivery of health care arise when conflicts occur between a conscience conviction that a professional wants to—prospectively—act on versus what the professional knows is professionally required of them. Typically there exists a conflict between a conscience conviction and a professional judgment, each pulling the moral agent in a different direction. To choose a more typical example: imagine a health care professional in a jurisdiction where

abortion is available to pregnant women who meet particular criteria and where the provision of abortion care is the responsibility of health care professionals like our moral agent. A pregnant woman who meets the eligibility criteria seeks the assistance of a health care professional belonging to the specialty tasked with the provision of this service. The health care professional objects on grounds of conscience, and refuses to provide the service. They may or may not refuse to provide an effective referral to the patient. The patient may or may not be able to find an alternative provider, especially if she is close to a cutoff point society has legislated.

P R O FE S S I O N A L I S M It matters that the people seeking accommodation for their conscientious refusals to provide care are professionals as opposed to other workers in society. One reason, discussed by Cholbi, is that the health care professions are essentially modern cartels. They shield their members from competition through what are society (state)-guaranteed monopolies on the provision of the professional services.8 Monopolies confer many benefits to their beneficiaries, not the least of which is the potential for significant economic benefits. However, there is a flipside to this. In return for having granted monopolies to professionals, society expects reliable delivery of services and high standards of professionalism. That arguably is one of the reasons for why publicly reported-on scandals involving unprofessional conduct, whether by health care professionals or other professionals, lead to public outcries. The promise, made in public oath ceremonies by health care professionals all over the globe, is that “the health and well-being of my patient will be my first consideration.”9 This is not an unusual promise. Professions are often conceptualized as existing to serve the public good.10 In line with this thinking, McLeod has argued that professionals have a fiduciary relationship with patients.11 An important reality check on this theorizing came from sociologists who observed that “not only do professionals wield power over their clients, they exert incredible C onscientio u s O bjection in H ealth C a r e 

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institutional power over labor markets, constructing barriers to entry and mobility.”12 Furthermore, ethnographic research described “professionals as motivated by elitism and domination over clients.”13 Perhaps it is not terribly surprising that there is a discrepancy between the conceptual ideal and reality. Various authors have argued that a professional like the health care professional in the abortion hypothetical who refuses to provide abortion care acts unprofessionally, and that the accommodation of conscientious objectors constitutes the accommodation of unprofessional conduct that should instead be subject to disciplinary action.14 Patients seek out health care professionals in their professional capacity, not as private individuals who are well entitled to hold views on abortion, to stay with the hypothetical introduced earlier. The patient is supposed to come first—this promise is central to what it means to be a health care professional. This is reflected in what has become the modern-day version of the Hippocratic Oath: the World Medical Association’s Declaration of Geneva. In its 2017 iteration, it reads (in part): “I will practise my profession with conscience and dignity and in accordance with good medical practice.”15 It is noteworthy that this line replaced this wording from the 2006 iteration of the document: “I will practise my profession with conscience and dignity.”16 What has changed? The umbrella organization of the world’s doctors saw it necessary to clarify that practicing medicine professionally is always meant to be understood with reference to good medical practice. It is not meant to be understood as granting priority to an individual professional’s expression of their personal conscience beliefs over fulfilling their professional obligations, certainly not while they are in their professional role. The accommodation of conscientious refusers risks eliminating the primary rationale for states’ enabling the continuation of these cartels. Reliable service delivery has turned in many parts of the world into a conscience lottery, as far as patient access to care is concerned. A case in point: in the United States, various states in the country have enacted health care refusal laws that “allow doctors or nurses to refuse to treat a patient even in an emergency 86 

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situation.”17 Professions’ enlightened self-interest demands that their members do not undermine the raison d’être of their very existence. From a professionalism perspective, what is it then that should guide the decision-making of a professional? The promises the World Medical Association suggests doctors should make during their graduation oath-making ceremonies give us a good idea. Rhodes summarizes it thus: First, . . . clinician decisions must be informed by professional judgement, not personal judgement. Patients and society rely on physicians to provide treatment according to that standard and, for the most part, they cannot know enough about their doctors’ personal values to choose them on any other basis. The second implication is that becoming a doctor is a moral commitment to give priority to “the ethical standard of care” over personal values. Becoming a doctor is, therefore, also ceding authority to professional judgement over personal preference.18 These are some of the reasons for why some contributors to this debate have concluded that properly understood health care professionalism and conscientious objection or refusal accommodation are incompatible. In what follows, I will examine possible counterarguments to this view.

FR E E DO M O F CO N S C I E N C E The right to freedom of conscience is frequently seen to be a human right, and there is some evidence that such an interpretation is supported in international human rights documents. We can trace a mention of it in a pivotal international United Nations human rights document, the International Covenant on Civil and Political Rights. It states in Article 18(1)1: “Everyone shall have the right to freedom of thought, conscience and religion. This right shall include freedom to have or to adopt religion or belief of his choice, and freedom, either individually or in community with others and in public or private, to manifest his religion or belief in worship, observance, practice and teaching.”19 On its own this could be read as a powerful ideological ally of conscientious refusers, but the same

Covenant in Article 18(3)1 aims to limit the exercise of these freedoms. “Freedom to manifest one’s religion or beliefs may be subject only to such limitations as are prescribed by law and are necessary to protect public safety, order, health or morals or the fundamental rights and freedoms of others.”20 It is worth noting here that no distinction is typically drawn between religious and other beliefs (and considered moral views).21 The reasons for this have much to do with the secular state’s inability to evaluate such claims, and with the state’s necessary neutrality visà-vis such ideological positions.22 No less a writer than John Locke in his Letter Concerning Toleration provided a sound rationale for this. He argued famously in favor of tolerating various competing Christian ideologies.23 As will become obvious, this has consequences for arguments24 proposing that accommodation is reasonable if the worldviews that lead to them are themselves reasonable by some definition. Invariably, national foundational laws will have differing interpretations of these international human rights documents, but they typically broadly mirror the sentiments expressed there in some form or shape. The question remains, of course, now that it is clear that conscience rights claims cannot be absolute, where one should draw the policy and regulatory line (if at all). The European Court of Human Rights, one influential human rights institution, for instance, decided that a pharmacist may not refuse to sell contraceptives on conscience grounds, because “as long as the sale of contraceptives is legal and occurs on medical prescription nowhere other than in a pharmacy, the applicants cannot give precedence to their religious beliefs and impose them on others as justification for their refusal to sell such products, since they can manifest those beliefs outside the professional sphere.”25 This court argued that while Article 9 of the European Convention on Human Rights guarantees freedom of conscience, it does not protect “each and every act or form of behaviour motivated or inspired by a religion or a belief.” That limitation is particularly important “with regard to the right to behave in public in a manner governed by that belief.”26 The European Commission of Human Rights issued an opinion that noted that the protection for conscience

guaranteed by the European Convention on Human Rights extends only to individuals and not to institutions.27 That matters a great deal, given the large number of religiously affiliated hospitals. Courts in the United States reached the opposite conclusion with regard to that country’s Constitution.28 If mere reference to conscience rights is insufficient to establish an unfettered right to accommodation, it might be necessary to increase the strength of such claims, in order to increase the weights of the scales of justice on the side of those demanding accommodation. Various arguments have been developed to support that objective. In what follows, these arguments will be discussed. Typically, those arguments aim to sustain policies translating into fettered accommodation rights based on balancing the interests of health care providers against those of eligible patients’ interests in accessing care.

A R G U M E N TS FR O M I N T E G R I T Y, WO R K FO R C E DI V E R S I T Y, AND EQUITY In traditional analyses and discussions of conscientious objection or refusal accommodation claims, concerns about threats to the integrity of people as moral agents feature prominently.29 Cowley goes further than this, arguing that absent accommodation rights, there is a danger that threats to an agent’s moral integrity are sufficiently weighty that they might choose not to become health care professionals in the first place, which results in a lamentable reduction of diversity in the profession.30 The argument, essentially, is that it is unreasonable to force a lifelong committed pacifist to join the military, because of the psychological cost of participating over extended periods of time in an activity that goes against everything a pacifist is known to stand for. However, as was noted already, there is an important moral difference when it comes to membership in the health care professions. They are typically not of a nature that makes becoming a health care professional a matter of coercion, as was the case with the pacifists and military service in Nazi Germany. The fact that C onscientio u s O bjection in H ealth C a r e 

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membership is voluntary and a matter of voluntariness and considered choice changes the moral evaluation of the accommodation question. While one might be sympathetic to the pacifist coerced—under threat of death—one has less reason—if any—to do so when voluntary membership in a privileged profession is at issue. After all, as in any workplace situation, one’s responsibilities are clarified when one takes up a particular position, and one is free to decline to take up a position that requires of one to perform tasks one is sufficiently morally opposed to that it threatens one’s moral integrity. That also applies to situations where one’s scope of responsibilities changes during one’s working life. This takes us to Cowley’s argument.31 He is concerned about the possibility that budding health care professionals might eschew the professions because of their inability to get accommodated in case they think that performing a contested service threatens their integrity as moral agents. This argument has some value if one thinks that one of the roles of a just profession is to be a mirror of the diversity of values held in a given diverse society. If, on the other hand, one thinks that—in line with what was said about professionalism—professionals in their professional role have an obligation to provide the services they contracted to provide, one would have to reject this argument. It is unclear what the value of diversity is in a profession if that diversity primarily undermines the profession. It is also unclear what interest a society could have in a profession the members of which prioritize their diverse values over the delivery of services they contracted to be the monopoly providers of. If anything, the societal focus should be on uniform reliable high-quality service delivery, given the raison d’être of a profession. None of this ought to be understood as requiring professionals to give up on their deeply held normative convictions, or to give up on trying to change societal or professional values. What it does mean is that while their professional services are required by patients who see them in their professional role, they ought to act professionally. In other words, they may object on grounds of conscience if they wish, but they may not refuse to provide the services they contest. 88 

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There is a related argument in this context, namely that of equitable access to a profession. It should be open to all members of society, there should be no arbitrary discrimination on morally indefensible protected grounds like gender, ethnicity, disability, and so on.32 Of course, there is a conflict then, as far as people are concerned, who desire to join a profession the scope of which they object to on religious or other normative grounds. The argument here appears to be akin to hypothetical animal rights activists aiming to become trainees in a butchery and complaining that their required participation in the killing of animals prevents equitable access to this career opportunity. They have made, prior to aiming to become trainees, a decision to object to the scope of practice in a typical butchery, and for that they arguably must accept responsibility. The point of the analogy is not to compare butcheries with health care facilities but to note that voluntary decisions to pursue particular careers do not translate into access privileges if, in the process of doing so, one also decides to object to the scope of the obligations that are part and parcel of what it means to work in that field.33

ARGUMENTS FROM REASONABILIT Y AND GENUINENESS A number of authors have taken a different approach to the issue altogether. They propose variously that accommodation is owed if a certain standard of reasonability34 is met by the objector or refuser, while others insist that their objection or refusal must be genuine. Myers and Woods35 argue that conscientious objectors ought to be required to demonstrate that the failure to accommodate their objection or refusal would cause significant mental hardship. This seems to tie in with the concerns raised by Wicclair and Pellegrino about threats to the integrity of health care professionals as moral agents. In response, Kantymir and McLeod36 have argued that such a standard would require the accommodation of conscientious objectors who are genuine, but who are genuinely racist, sexist, or homophobic. Genuineness of one’s views alone doesn’t appear to be sufficient

to bolster the case for accommodation then, unless a society would be willing to grant accommodation also in cases involving racist, sexist, or homophobic conscience views. Even professional associations that are supportive of accommodation, like the American Medical Association, do not appear to be willing to go that far.37 Some authors have suggested that if accommodation is granted on grounds of genuineness alone, responses like that of the American Medical Association, where racist consciences, for instance, would not be accommodated, draw arbitrary policy lines in the sand.38 Concerns have also been raised about our ability to ascertain whether someone’s claims of genuineness can be tested in a reliable manner. MacLure and Dumont note that courts in Canada do “probe the ‘sincerity’ of the claimant.”39 That response does sidestep the question at hand. In reality, such tests can only investigate how efficient conscience claimants are in terms of persuading a regulatory body or a court that they are genuine. None of that proves sincerity. Genuineness cannot be tested, and even if it could, Kantymir and McLeod’s argument needs addressing in a non–ad hoc manner. Card40 as well as other writers41 have defended different reasonability standards. Essentially they suggest that if accommodation seekers meet a particular level of reasonableness, they ought to be granted accommodation. Prima facie this seems to be a more promising approach toward something that—on a societal, or on a policy level—might be able to facilitate a compromising position. Zolf sounded a note of caution, arguing that the proposed reasonability standards could end up demanding too little or too much of objectors.42 A case in point: if the standard one aimed to defend would require public reason– based arguments, religiously motivated objectors, who probably form the majority of objectors today,43 would consider this as too demanding, because their accommodation requests would not be successful. On the other hand, their opponents would consider this further evidence that these accommodation demands are unreasonable to begin with. Even if these kinds of challenges could be overcome, the more fundamental difficulty with this proposal is that for legislation or the courts to determine

what is reasonable with respect to a conscience claim, legislators or judges would have to take a substantive stance on moral or religious values. It is inconceivable for a secular society to do so without sacrificing religious freedom. This is a lesson the European nations learned the hard way during the Thirty Years’ War (1618–1648). Locke rightly argued for the need to define separate roles of religion and government in his 1689 Letter Concerning Toleration.44 The state exists and acts for secular reasons not requiring a single religious orthodoxy. Until today the courts in liberal democracies have refused to decide what is right or reasonable with regard to non-secular values. And so they continue to act as guardians of religious freedom in secular societies.

A R G U M E N T FR O M T H E VA LU E S OF T H E H E A LT H C A R E P R O FE S S I O N S Some authors have suggested that, in order to avoid the kinds of problems that were just described, accommodation requests should only be granted in situations where a contested service that gives rise to a conscientious objection or refusal claim is caused by a relatively new service.45 Others, more pointedly, have proposed that accommodation should only be granted in situations where the contested service is in conflict with the traditional values held by the profession. Wicclair, for instance, argues that a conscientious objection that should be accommodated is one that “has significant moral weight only if the core ethical values on which it is based correspond to one or more core values in medicine.”46 These points of view have a certain appeal to them, because they seem to aim to limit the disruption of professional service provision to a defensible minimum, while protecting conflicted professionals in serious cases where newly introduced service could be described as being in conflict with traditional professional values. What is problematic with this stance is that it seems to be reducible to an argument from tradition. Of course, no ought can be derived from how things were; more is required in terms of argument. It is also noteworthy that a growing number national medical C onscientio u s O bjection in H ealth C a r e 

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associations unequivocally refer to these contested services as desirable health care.47 Even if one were to ignore the fallacy of the argument from tradition, one of the questions that would still arise is this: who decides what the traditional view of a profession is? After all, the scope of medical practice changes all the time; it is permanently in flux.

UN FE T TERED ACCO MMO DAT I O N UN DE RMIN E S E Q UA L CI T I Z E NSH I P Given that health care professionals are, as has been noted earlier, societal monopoly providers of specialized services, granting them the right to withhold those services from eligible fellow citizens on grounds that are not professional judgment based, in effect, has the consequence of undermining the equal citizenship of their patients. That is the case whenever the grounds on which those services are withheld cannot be meaningfully professionally examined or otherwise reviewed.

CO NSE QUE NCE S O F ACCOMMODAT I O N Social science research has pointed to the harmful consequences of accommodating conscientious objectors or refusers. At a minimum, it will result in suboptimal patient access to health care. This is true both when accommodation is granted and patients have to find alternative providers, as well as when—what is thought in many jurisdictions to be a compromise position—effective referral policies have been introduced. Chavkin and colleagues report, for instance, that “in South Africa, widespread conscientious objection limits the number of willing providers and, thus, access to safe care, and the number of unsafe abortions has not decreased since the legalization of abortion.”48 Another harmful consequence of accommodation is that it results in inequitable workloads for health care professionals. Doctors willing to provide the contested services that are conscientiously refused by some or many of their colleagues would have to carry an inequitable load of such work. 90 

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CO M P R O M I S E S This review should conclude appropriately with a brief look at what is considered a compromise position or policy that is being implemented in many jurisdictions. The compromise position requires of objectors or refusers to provide what is often labeled as an “effective referral,” whereby the onus is on the refuser or objector to ensure that their patient is successfully transferred to another health care professional who is willing to provide the service. What is interesting about this compromise is that it satisfies neither the objectors and refusers nor those opposed to accommodation. Perhaps that suggests to some that this might be the golden middle way that policy-makers and the courts have been searching for, but a look at the reasons for why nobody is quite happy with this solution might be a good indication for why this compromise isn’t quite a compromise. To the objector, the refusal to participate, for instance, in abortion, is oftentimes a matter of whether they participate in something they consider akin to murder. It is unimportant here whether their views on the issue are plausible; what matters is how very serious this issue is in their worldview. A compromise requiring of them to ensure that the patient is transferred to another doctor who they know would be willing to commit what they consider murder is not a compromise. On the other hand, patients are inconvenienced: they might have to travel over longer distances to reach a willing provider, and quite likely the care they seek will be delayed. In other words, these compromises are likely to compromise patient care. The difficulty to reach uncontroversial policy positions will likely ensure that this issue will remain a live topic in bioethics, health policy, and health law in many societies.

CO N C LU S I O N This chapter offered an overview of the major points of contention in the ethics debates on conscientious objection accommodation. It highlighted ethically relevant differences between historical conscientious objectors

and today’s objectors. A closer look at the concept of conscience revealed that conscience is not a source of moral knowledge. The much-cited notion of freedom of conscience turned out to be frequently misunderstood. International human rights instruments invariably stress that this freedom must be balanced against harms that acting on one’s conscience might cause to others. Attempts at determining the soundness of a conscientious accommodation claim based on its reasonability or genuineness seem to be bound to fail for the reasons spelled out in this chapter. Appeals to concerns about threats to the moral integrity of health care professionals, as well as the arguments based on the values of diversity and equality of opportunity do not appear to fare much better. A warning was sounded that accommodation of conscientious objectors has the potential to undermine the equal citizenship of patients. Lastly, popular compromise formulas that are being introduced in jurisdictions across the global north are anything but compromises. Neither conscientious objectors nor those opposed to conscientious objection accommodation have reason to consider these compromises to be true compromises.

N OTE S 1.  United Nations Human Rights Committee. General comment No. 22, Article 18 of the International Covenant on Civil and Political Rights, 48th Sess., U.N. Doc. CCPR/C/48/CRP.2/Rev.1, July 30, 1993, https://www .refwo rld.org/docid/45388 3fb22.html, paragraph 11. 2.  Peter Brock, Pacifism in Europe to 1914 (Princeton, NJ: Princeton University Press, 1972). 3.  Hannelore Braun, “Hermann Stöhr (1898–1940),”in Zeugen einer besseren Welt: Christliche Märtyrer des 20. Jahrhunderts, eds. Karl-Joseph Hummel and Christoph Strohm (Leipzig, Germany: Butzon and Bercker, 2000), 87–105. 4.  Peter Fuss, “Conscience,” Ethics 74 (1964): 111–20; Mark R. Wicclair, Conscientious Objection in Health Care: An Ethical Analysis (Cambridge: Cambridge University Press, 2011). 5. Edmund Pellegrino, “The Physician’s Conscience, Conscience Clauses, and Religious Belief: A Catholic Perspective,” Fordham Urban Law Journal 30 (2002): 221–44. 6.  Daniel P. Sulmasy, “What Is Conscience and Why Is Respect for It So Important?,” Theoretical Medicine and Bioethics 29 (2008): 135–49.

7.  Fuss, “Conscience,” 111. 8.  Michael Cholbi, “Public Cartels, Private Conscience,” Politics, Philosophy and Economics 17 (2018): 356–77. 9. World Medical Association, Declaration of Geneva, 2017, accessed September 27, 2021, https://www.wma .net/policies-post/wma-declaration-of-geneva/. 10.  Emile Durkheim, Professional Ethics and Civic Morals (London: Routledge, 1992 [1957]); E. Freidson, “Theory and the Professions,” Indiana Law Journal 64 (1989): 423–32. 11. Carolyn McLeod, Conscience in Reproductive Health Care: Prioritizing Patient Interests (Toronto: Oxford University Press, 2020). 12. Roy Suddaby and Daniel Muzio, “Theoretical Perspectives on the Professions,” in The Oxford Handbook of Professional Service Firms, eds. Empson Laura et al. (Oxford: Oxford University Press, 2015), 25–47, at p. 27. 13. Suddaby and Muzio, “Theoretical Perspectives on the Professions.” Op.cit. 14.  Julian Savulescu and Udo Schuklenk, “Doctors Have No Right to Refuse Medical Assistance in Dying, Abortion or Contraception,” Bioethics 31: 162–70. 15. World Medical Association, Declaration of Geneva, 2017. 16. World Medical Association, Declaration of Geneva, 2006, accessed September 27, 2021, https://www.wma.net /wp-content/uploads/2018/07/Decl-of-Geneva-v2006-1 .pdf. 17. Douglas NeJaime and Reva B. Siegel, “Conscience Wars: Complicity-Based Conscience Claims in Religion and Politics,” Yale Law Journal 124 (2015): 2516–91. 18.  Rosamond Rhodes, “The Ethical Standard of Care,” AJOB 6 (2006): 76–78. 19.  International Covenant on Civil and Political Rights. Adopted December 16, 1966. General Assembly Resolution 2200A(XXI), United Nations GAOR, 21st Session, Supp. No. 16, at 52, U.N. Doc. A/6316 (1966), 999 U.N.T.S. 171. 20.  International Covenant on Civil and Political Rights. 21. Daniel Weinstock, “Conscientious Refusal and Healthcare Professionals: Does Religion Make a Difference?,” Bioethics 28 (2014): 8–15. 22.  Russell Blackford and Udo Schuklenk, “Religion at Work in Bioethics and Biopolicy: Christian Bioethicists, Secular Language, Suspicious Orthodoxy,” Journal of Medicine and Philosophy 46 (2021): 169–87. 23.  John Locke, A Letter Concerning Toleration ( London: Awnsham-Churchill, 1689). 24. Robert Card, “Reasonability and Conscientious Objection,” Bioethics 28 (2014): 320–26. 25.  Pichon and Sajous v France, 2001-X Eur. Ct. H.R. 26. Ibid. 27.  C. Zampas and A.-I. Ximena, “Conscientious Objection to Sexual and Reproductive Health Services: International Human Rights Standards and European Law and Practice,” European Journal of Health Law 19 (2012): 231–56.

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28.  Douglas NeJaime and R. B. Siegel, “Conscience Wars: Complicity Based Conscience Claims in Religion and Politics,” Yale Law Journal 124 (2015): 2516–91. 29. Wicclair, Conscientious Objection. 30. Christopher Cowley, “A Defence of Conscientious Objection in Medicine: A Reply to Schuklenk and Savulescu,” Bioethics 30 (2016): 358–64. 31. Ibid. 32.  Jocelyn Maclure and Isabelle Dumont, “Selling Conscience Short: A Response to Schuklenk and Smalling on Conscientious Objections by Medical Professionals,” Journal of Medical Ethics 43 (2017): 241–44. 33.  Ricardo Smalling and Udo Schuklenk, “Against the Accommodation of Subjective Healthcare Provider Beliefs in Medicine: Counteracting Supporters of Conscientious Objector Accommodation Arguments,” Journal of Medical Ethics 43 (2017): 253–56. 34. Robert Card, “Reasonability and Conscientious Objection,” Bioethics 28 (2014): 320–26. 35.  C. Myers and R. Woods, “Conscientious Objection? Yes, But Make Sure It Is Genuine,” AJOB 7 (2007): 19–20. 36.  L. Kantymir and Carolyn McLeod, “Justification for Conscience Exemptions in Health Care,” Bioethics 28 (2014):16–23. 37. American Medical Association Council on Ethics and Judicial Affairs, “Physician Exercise of Conscience” (2014): 3, accessed September 27, 2017, https://www.ama -assn.org/sites/ama-assn.org/files/corp/media-browser /public/about-ama/councils/Council%20Reports/coun cil-on-ethics-and-judicial-affairs/i14-ceja-physician-exer cise-conscience.pdf. 38. Udo Schuklenk, “Accommodating Conscientious Objection in Medicine: Private Ideological Convictions Must Not Trump Professional Obligations,” Journal of Clinical Ethics 27, no.3 (2016): 227–32.

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39.  Maclure and Dumont, “Selling Conscience Short.” 40.  Card, “Reasonability and Conscientious Objection.” 41. Nir Ben-Moshe, “The Truth behind Conscientious Objection in Medicine,” Journal of Medical Ethics 45 (2019): 404–10. 42.  Benjamin Zolf, “No Conscientious Objection without Normative Justification: Against Conscientious Objection in Medicine,” Bioethics 33 (2019): 146–53. 43. D. Laycock, “Regulatory Exemptions of Religious Behavior and the Original Understanding of the Establishment Clause,” Notre Dame Law Review 81 (2006): 1739–842, at 1839 for the United States; Strasbourg Consortium for European Court of Human Rights cases, http://www .strasbourgconsortium.org/. I owe these references to B. Leiter, 2013, n6. 44.  John Locke, A Letter Concerning Toleration (Indianapolis: Hackett, 1983 [Originally published in 1689]). 45.  Shimon M. Glick and Alan Jotkowitz, “Response to: ‘Why Medical Professionals Have No Moral Claim to Conscientious Objection Accommodation in Liberal Democracies’ by Schuklenk and Smalling,” Journal of Medical Ethics 43 (2017): 248–49. 46.  Mark R. Wicclair, “Conscientious Objection in Medicine,” Bioethics 14: 205–27. 47.  For instance, see “Doctor-Assisted Suicide a ‘Therapeutic Service,’ Says Canadian Medical Association,” CBC (February 6, 2015), accessed February 21, 2022, http://www .cbc.ca/news/health/doctor-assisted-suicide-a-therapeu tic-service-says-canadian-medical-association-1.2947779. 48. W. Chavkin, L. Leitman, and K. Polin, “Conscientious Objection and Refusal to Provide Reproductive Healthcare: A White Paper Examining Prevalence, Health Consequences, and Policy Responses,” International Journal of Gynecology & Obstetrics 123 (2013): 541–56.

SEC TION III

DISCRIMINATION IN BIOETHICS

CHAPTER 9

Epistemic Injustice in Health Care Ji-Young Lee

T

here are numerous ways patients can be wronged or suffer injustices in their health care experiences. Patients could be coerced into unwanted medical procedures, for example, or be treated with disrespect. Beyond the clinical setting, patients might experience unjust and disabling environments that fail to accommodate their needs—a commonplace example being wheelchair users who are unable to access buildings without ramps. More recently, scholars have started paying attention to a distinctively epistemic kind of wrong that can befall patients: epistemic injustice. Epistemic injustice is the catch-all term for the various ways that agents can be wronged in their capacity as knowers, due to their being excluded or undermined in some way as epistemic agents because of identity prejudices about them held by others. It is, as Miranda Fricker says, “fundamentally a form of . . . discrimination.”1 In the health care context, this occurs because patients’ testimonies “are often dismissed as irrelevant, confused, too emotional, unhelpful, or time-consuming”2 by health care professionals who epistemically marginalize them. While physicians may too lament about the fact that some patients “provide medically irrelevant information, make odd statements and superfluous remarks about their condition,”3 it is important to note here that the primary issue for this chapter is not simply with “isolated or incidental cases of 94

communicative failure in otherwise epistemically harmonious systems.”4 Rather, epistemic injustice implies a structural and persistent problem that befalls health care institutions. We might be justified in thinking that epistemic injustice is especially potent in health care, given a combination of several facts. Firstly, there is the fact that health care providers are subject to the same biases about human beings as any other person, making them susceptible to prejudice when it comes to listening to their patients and taking their perspectives under consideration. Secondly, there is the fact that health care providers are relatively advantaged compared to patients with respect to the status of their epistemic authority. When people presume that “doctor knows best,” the working assumption is that physicians are the experts on medical conditions, rather than the patients who experience or suffer from the symptoms. A typical model of patient–doctor exchange is that patients are supposed to seek out the expert counsel of their health care providers. This places patients—especially marginalized patients who are already prone to be treated in unjust ways—in a potentially vulnerable position. Even if we were to generally accept and trust the expertise of doctors, the central issue herein will be about the phenomenon where patients’ health experiences and claims are not taken seriously by health care practitioners because of arbitrary reasons to do with social identity prejudices against patients. Since the most

widely discussed types of epistemic injustice in philosophical and bioethical literature consist of what is named testimonial injustice and hermeneutical injustice, this chapter will particularly highlight instantiations of these phenomena in health care. Testimonial injustice is the wrong that speakers suffer by having their claims be given less credit than their due by a would-be hearer who holds wrongful prejudices toward the speaker’s social identity and epistemic position. This is what makes dismissals of certain agents’ knowledge cases of epistemic injustice, rather than simply a misunderstanding or a case of bad listening on the hearer’s part. For example, Lauren Freeman claims that many pregnant women’s testimonies of their own bodies are not taken seriously by health care professionals on account of long-standing stereotypes and prejudices about pregnant women being unable to read or know their own bodies.5 This is exacerbated by the “inflated epistemic authority and accompanying power that medical practitioners come to hold over women’s bodies,”6 particularly when it comes to women’s reproductive health. Freeman says that women’s testimonies of sensory, embodied experiences are eschewed in favor of “objective,” quantifying tools, such as ultrasound technology. This demotes women to “occupy a position of powerlessness”7 and to cease to possess epistemic privilege over their bodies. The message here is that the psychosomatic testimonies articulated and expressed by patients are undermined, and not by accident: the prejudices held about pregnant women contribute to this phenomenon of having their testimony undermined. Moving on, hermeneutical injustice describes the wrong that agents can suffer due to a gap in the collective interpretative resources and tools, which place them at an undue disadvantage when it comes to their making sense of and communicating about certain social experiences. In Miranda Fricker’s work, the example of the concept of “sexual harassment” is brought up as a case in point.8 Without this concept to identify certain social experiences of sex discrimination, one may be at a loss to describe the wrongs of what they experience. To narrate one’s experiences of victimization, agents need hermeneutical tools

“with which to characterize the events as harmful or injurious.”9 Ian James Kidd and Havi Carel have said that ill persons can be especially susceptible to hermeneutical challenges, for example, because certain aspects of illness experiences simply cannot be communicated to others via mere propositional articulacy. Experiences like childbirth or chronic pain, for instance, might only be understood “upon a person’s having had the requisite bodily experiences.”10 Although epistemic injustice in general is surely not limited to health care, and injustices in health care are not all epistemic, the topic at hand is worthy of our ethical attention because of their potentially detrimental implications for patient treatment and care. For the remainder of this chapter, I will highlight various case studies of epistemic injustice in health care, discuss why these practices are harmful, and then survey some remedial proposals that have been put forward for ameliorating epistemic injustice. I close the chapter by tentatively suggesting that we proceed with our ameliorative reflections on epistemic practices with renewed attention to prevalent concepts in medical decision-making such as consent, autonomy, and shared decision-making.

C A S E S T U DI E S O F EPISTEMIC INJUSTICE IN H E A LT H C A R E CO N T E X TS The introductory part of this chapter introduced the two paradigmatic ways that one might suffer epistemic injustice: via testimonial and hermeneutical injustice. I now consider some case studies—including endometriosis, depression, obesity, and long Covid— which will spell out further how troubling and widespread the phenomenon of epistemic injustice is in the context of health care.

Endometriosis Endometriosis is a painful and chronic condition where tissue similar to the womb’s lining starts to grow in other places, like the ovaries and fallopian tubes.11 Symptoms include abdominal and pelvic E pistemic I nj u stice in H ealth C a r e 

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pain, as well as pain during menstruation and during or after sex. Endometriosis may also create difficulties with getting pregnant. However, patient testimonies that crucially speak to the possibility that they might suffer from endometriosis are given less credit than their due, as clinicians might say that sufferers exaggerate their symptoms. This is because, unfortunately, women’s reports of pain are often discredited in clinical settings, given “assumptions about women’s health based on gender stereotypes about pain thresholds and patient credibility.”12 As C. E. Jones says, “Rewriting pain as psychological suggests that those with [endometriosis] are hysterical,”13 which creates obstacles for the patient in terms of receiving the support necessary to ease symptoms. In this way, the dialogue exchanged between doctor and patient is not neutral, but rather informed (consciously or unconsciously) by gendered stereotypes and assumptions about what women are thought to know about their own bodies and their own psychosomatic condition. This historical tendency to presume that women’s reports of pain are exaggerated is in this case also compounded by the fact that the primary subjective experience of endometriosis may be the experience of pain. This is, of course, “elusive from a medical point of view” because “severity does not correlate with observable extent of disease.”14 The problem, then, is that even expert doctors who are supposed to be the best-equipped to recognize such conditions are, because of the reasons stated before, inadvertently prone to underdiagnose or misdiagnose conditions like endometriosis and dismiss patient symptoms.

Depression Depression is a condition accompanied by various symptoms, such as loss of interest in activities once enjoyed, changes in appetite, fatigue, mood changes, trouble sleeping, and so forth.15 Although depression is a fairly common and familiar condition among people from all walks of life, some are critical of its status in psychiatry, claiming that “depression pathologizes sadness” while obscuring “necessary reactions to human experience and social injustice.”16 This carries with it the risk that conflicting first-person testimony 96 

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is construed as “no more than oppressive socialization.”17 Skeptical and stigmatizing attitudes that reduce agents’ personal encounters of depression in this way is one way that patients might suffer from epistemic injustice in the psychiatric realm. Jake Jackson has helpfully identified three well-intentioned, yet stigmatizing attitudes, which can be patronizing to individuals suffering from depression and thus contribute to epistemic injustice. He calls these attitudes the naïve, the romantic, and the interventionist attitudes.18 The naïve attitude might play off depression as “mere” sadness, thereby undermining the depth and complexity of the condition. This echoes what Lucienne Spencer and Havi Carel have termed “wrongful depathologization,” which occurs in psychiatry when people’s psychiatric symptoms are reduced to quirks or “mere personality traits.”19 The romantic attitude, moreover, “forces meaning on the other’s suffering,” for example, by implying that one’s darkness makes one special.20 Finally, the interventionist attitude escalates the sufferer’s condition and interprets any account of depression “too seriously,” assuming that the depression sufferer “is in immediate danger either of self-harm or of harm to others.”21 Outsiders might ask sufferers invasive or triggering questions, for instance, related to suicide or trauma, assuming that this is the homogenous experience of depression. One’s first-person accounts of mental health conditions are necessary to nuance and contextualize understandings of phenomena like depression, and to fully appreciate the unique circumstances of each person’s individualized experience. Unfortunately, it is common for many who experience mental illness to “feel that they are not being listened to or taken seriously, not considered able to fully understand their experiences, and not considered reliable sources of knowledge.”22 What is especially difficult in psychiatric cases is that the label or ascription of the given mental health condition seems itself to constitute a social identity unto which people project undue prejudice. So even if a patient is not marginalized with respect to their race, gender, or sexual identity, they may still be marginalized as someone with a mental illness.

Obesity Being overweight or obese, or “fat,” is often—almost ubiquitously—assumed both by the public and by health care professionals to be “the consequence of eating too much and exercising too little, the publishment shared by people guilty of the twin sins gluttony and sloth.”23 This anti-obesity bias is rising in places like the United States, with even physicians who specialize in treating obese patients exhibiting unconscious anti-obesity attitudes.24 Some scholars prefer to capture the seriousness of this bias in terms of fat phobia, which involves “hatred and dread of fatness.”25 Scholars have said that “obesity has been medicalized to such an extent that there are few medical conditions for which it cannot be associated and therefore, blamed.”26 Obesity is, moreover, narrativized in such a way that makes obese people blameworthy for burdening health care services and undermining the economy.27 Further, patients with obesity may be considered lazy or “lacking in self-control.”28 Such stigma around weight in health care can therefore lead to a poor quality of care for overweight patients.29 These prejudices, for instance, mean that patients are often told by default that their weight is the source of their medical ailments.30 The following is a sobering example of one such case: Ellen Maud Bennett had felt unwell for a few years before her death in May 2018. But the physicians Bennett consulted couldn’t see past the extra pounds she carried. If she’d only lose weight, she’d feel better, they told her. Finally, a physician must have suspected another reason for her malaise, because Bennett was diagnosed with advanced-stage cancer just days before her death at age 64 years.31 This case speaks to another way that unfair stereotyping of “fat” people by health care practitioners (and the wider society) can undermine their epistemic credibility when it comes to describing ailments. Such stereotyping interacts with commonly held views about obesity and its causal relation to other health problems, making it the case—as shown earlier—that medical support for overweight individuals is firstly

reduced to a weight loss issue before other explanations or treatment avenues are explored. The patient identified as “obese,” then suffers similar identity prejudices as the depressed patient, in that their perceived health condition is stigmatized. In the obese patient’s case, however, the prejudices held about them as being fat and in need of weight loss means that basically any ailment they share will often be considered simply a co-morbid condition that would be improved with diet and exercise.

Long Covid Long Covid, or long-haul Covid, is a patient-originated term that describes a more long-term and complex course and symptomatology of illness than initially supposed for “mild” cases of Covid. Emerging patient testimonies to this effect were not “commonly acknowledged within many health care and policy channels in early pandemic months.”32 Felicity Callard and Elisa Perego have said it “is the first illness to be made through patients finding one another on Twitter and other social media.”33 They have argued that the “acknowledgement of prolonged Covid illness by the wider scientific community often occurred subsequent to patient efforts,”34 and that patients’ contributions ought to be recognized. Long Covid presented particular risks for epistemic injustice, because it involves, for instance, symptoms that are “subjective” or entirely reliant on the patient’s testimony such as anxiety and fatigue, which are “not detected through diagnostic workup.”35 In such cases, patients must depend on their health care provider to “acknowledge their condition and suffering in the absence of objective biomarkers.”36 Furthermore, some patients may never have been tested for Covid-19, and on that basis may have their symptoms be dismissed. With the medical community lagging with respect to validating the possibility of a condition like long Covid, sufferers may also experience a kind of hermeneutical injustice because they are at a loss to explain, legitimize, and interpret their longform Covid symptoms. In a way, the endeavor to define the phenomenon of long Covid could be seen as an epistemic corrective, an attempt at generating a E pistemic I nj u stice in H ealth C a r e 

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hermeneutical resource for patients whose symptoms are poorly accounted for in medicine. On October 6, 2021, the World Health Organization acknowledged and proposed a definition for long Covid: “Post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms and that last for at least 2 months and cannot be explained by an alternative diagnosis.”37 This is now the first official definition given to the phenomenon by a health organization. The growing recognition of this emerging condition now means that patients can finally use this concept in consultation with their health care providers. This goes to demonstrate, at least it appears to me, that in medically developing scenarios such as a pandemic, it is important to balance available medical information with the epistemic warrant that sufferers of the relevant disease may have to get their experiences taken seriously by health care professionals.

TH E HARMS O F EPISTE MIC IN JU ST I CE Each of the case studies discussed in this chapter capture how the social hierarchy between physician and patient, as well as stigmatization around certain health conditions, may manifest distinctly epistemic dimensions. Epistemic injustice in health care can work against the knowledge claims of the already marginalized, further disadvantaging them. It should therefore worry us that people are mistreated epistemically on top of other injustices they might suffer. In this section, I briefly detail how epistemic injustice not only harms the patient but also does a disservice to the patient–doctor or patient–institution relationship and to the medical community.

Harms to the Patient The cases discussed in this chapter have already heavily hinted to us that epistemic injustice can harm the patient in many ways. It may lead to underdiagnosis or diagnostic inaccuracy, as we saw in the 98 

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case of endometriosis, for instance. Epistemic injustice reinforces stigmatization practices of marginalized groups such as the mentally ill, as seen in the depression case, making it difficult for their input and claims to medical needs to be taken seriously. This could lead to “isolation, confusion and patient withdrawal from the healthcare system.”38 And, as we saw in the obesity case, epistemically unjust treatment of patients may quite literally lead to their death. Our examples have unveiled that the harms of epistemic injustice are not simply epistemic in kind but are also consequently connected to the psycho-physiological welfare outcomes of the relevant patients. We could argue, then, that the kind of epistemic exclusion that characterizes epistemic injustice cases is a preventable barrier to proper health care and treatment, and on that basis requires normative attention alongside other injustices in health care.

Patient–Doctor and Patient–Institution Relationship The patient–doctor relationship has shifted in its power dynamics over the decades. In recent decades especially, the recognition of patient autonomy as an essential component of medical decision-making has made it possible for patients to have an input in the kind of treatment they receive and the health procedures they decide to undergo. While many see this as a positive development, people have proclaimed that “the shift in the power balance has led at times to the disempowerment of doctors and their portrayal as adversaries needing control and surveillance,”39 with an erosion of trust between the patient and doctor. To make matters worse, if patients feel “ignored, dismissed or even silenced”40 because of epistemic injustice, this can further threaten the trust between patients and physicians or clinical institutions. This speaks in favor of aiming for epistemically just practices in health care. Highlighting the patient’s epistemic role in dialogue with health care practitioners would be essential to establishing and maintaining good relations in a dynamic that is already asymmetrical with respect to who is given the greater epistemic authority.

Medical Community When first-person experiences of patients are unduly excluded and invalidated, the medical community as a whole suffers a loss. As Kristin Margrethe Heggen and Henrik Berg have said, the prevalence of the allegedly objective and value-free evidence-based practice in medicine means that a “lack of scientific evidence can be conflated with the lack of symptoms because there are no standardized methods to identify these symptoms.”41 Yet, it seems that patient testimonies can be used as a resource or way of deepening the understanding over how certain conditions are embodied and experienced. This applies especially for the multitude of health conditions wherein the primary or most salient symptoms involve phenomenological or hard-to-quantify experiences, like pain. Arguably, then, treating patients unjustly in the epistemic sense constitutes a disservice to the larger medical community. It seems plausible to think that testimonial data from the patients who suffer at first hand may often help construct rather than obstruct general understandings of diseases and illnesses.

AME LIOR ATIV E ST R AT E G I E S F OR E P ISTE MI C JU ST I CE Popular proposals for combating the harms of epistemic injustice in health care include enacting systematic changes, training up health care practitioners and better including patient perspectives. As Carel and Kidd mention, epistemic injustice has “for a long time been responded to with policy proposals for inclusion of ‘patient perspectives’ and the instigation of ‘patient-centred care,’ and castigation by patient activists of the communicative failures endemic to healthcare encounters.”42 Further, we could call for a heightened awareness of “epistemic power differentials built in the clinical relationship between health professionals and patients.”43 Alistair Wardrope explicitly calls for epistemic humility in health care, which would involve critical self-awareness of one’s epistemic limitations, alongside “a resolution to promote publicly both the awareness of those limitations, and the alternative authorities that

aid in overcoming them.”44 Rageshri Dhairyawan says that individual and institutional biases have to be addressed systematically, starting at medical school, so that practitioners can, for example, learn about “the historical origins of gender and racial stereotypes in medicine and how they affect health outcomes now.”45 Leah Teresa Rosen echoes this thought by saying that medical and nursing students “should be introduced to the topic of epistemic injustice as early as possible.”46 One way to better include and consult patients in context may be to enable them to take substantive part in the more structural medical decision-making processes. Anke Bueter, for example, calls for the “integration of patients and advocates into taxonomic decision-making in psychiatry, in particular into DSM-revision processes”47 to minimize the epistemic exclusion of the very patients that diagnostic tools such as the DSM are meant to serve. Others have said that the inclusion of patient perspectives is not the only route to alleviate epistemic injustice in health care. Some have argued, for instance, that patients might benefit from accessing their medical notes away from face-to-face encounters where they are more vulnerable to epistemic discrediting.48 A core normative imperative that might be distilled from the ameliorative suggestions in this chapter might consist of something like the following. The bases that make up the contemporary ethics of medical decision-making—patient consent and autonomy, for example—ought to also explicitly align with policies that aim for epistemic justice in health care. Added attention to the mitigation of epistemic maltreatments should be entirely consistent with commonly accepted bioethical principles and enhance our existing efforts to ethically improve medical decision-making procedures. That is not to say, however, that we should simply let the patient’s epistemic contributions count for everything. On the contrary, doing justice to the patient’s perspective will require joint efforts from physicians and medical institutions to enact epistemically instructive and non-discriminating patient interactions. This is especially the case because the medical community is plausibly one of the institutions that make up E pistemic I nj u stice in H ealth C a r e 

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what Faik Kurtulmus calls the epistemic basic structure of society. The epistemic basic structure includes institutions which “have . . . impact on individuals’ opportunity to obtain the knowledge they need to deliberate about the common good, their individual good, and how to pursue them.”49 Something we might do to ensure that objectives for epistemic justice form part of the contemporary ethics of medical decision-making is to re-evaluate, from a specifically epistemic perspective, what we think it takes for patients to be empowered and properly equipped to make medical decisions. Take the concept of informed consent, for example. Informed consent is typically considered a means by which to respect a person’s wishes to participate in research or to undergo health interventions, involving factors such as information and voluntariness.50 Such a concept is bound up with autonomy, which generally denotes a patient’s competence to make their own medical decisions. As the handbook chapter on “Autonomy and Responsibility” by Lisa Dive shows, however, autonomy is a fraught and complex concept in bioethics. While autonomy typically requires the same kind of conditions demanded by informed consent, like information and adequately free choice, there are some critical discussions on ways that a patient’s social context may play an unduly influencing role in their medical decision-making. My discussion about epistemic injustice in the health care context invites us to critically evaluate and further nuance the role that knowledge, information, and understanding plays for consent and autonomy, the conceptual cornerstones of contemporary medical decision-making. Ordinarily, we might assume that a lack of understanding on the part of the patient about a particular medical procedure should be the primary concern for their being able to make an autonomous decision about getting that procedure. This would make acquiring autonomy a matter of compensating for the patient’s deficits in their ability to understand and navigate certain health implications relayed to them by a health care professional. However, the incidences of epistemic injustice discussed in this chapter illustrate that knowledge acquisition is multi-directional, flowing not only from doctor to 100 

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patient but also potentially growing out of patient testimony in dialogue with a physician’s expert sensitivity and attentiveness. When epistemic exchange goes awry because of epistemic injustice, patients can be made vulnerable by how epistemically competent (or incompetent) they are perceived to be in the first place, even if they have access to important information and self-knowledge that their physician lacks. And a physician’s prejudiced proneness to arbitrarily misjudge what is relevant to the patient, or to misread patients’ competence to reflect about their own health conditions or options, means that patients end up being misinformed or otherwise less well placed to make autonomous medical decisions. Take the following example, in the context of reproductive decision-making. Amber Knight and Joshua Miller have pointed to the fact that offering women non-invasive prenatal testing (which detects various chromosomal abnormalities like Down Syndrome) does not conduce to their reproductive autonomy if medical professionals perpetuate epistemic injustice.51 For instance, health care providers might fail to sufficiently inform them about what it is like to raise a child with Down Syndrome, or to “mischaracterize the lived experience of DS”52 because of ableist biases they hold against disabled lives. This is clearly a case where the health care provider’s own values and biases are reflected in knowledge that is framed and then shared with the patient, depriving the patient from considering the full range of possibilities that might interest them upon receiving genetic information about their fetus. It seems here that the physician’s epistemic authority is exercised in a way that amounts to epistemic maltreatment of the patient. Counteracting such prejudices, which may unduly shape the very way that relevant information is imparted with patients, alongside eliciting the patient’s values and perspectives, will then serve as the kinds of epistemic tasks that will be necessary to operationalize to minimize patient harm and deficits to patient autonomy. My recommendation to approach prevailing bioethical frameworks for decision-making with a view to aim for epistemically just practices also has affinity with a more recent model that has emerged in

the literature: shared decision-making (SDM). SDM is a model of medical decision-making that involves physicians communicating about treatment options but also patients communicating their values and preferences.53 Against unilateral models of decision-making like patient choice or paternalism,54 SDM attempts to adjudicate between multiple actors who have joint decision-making powers. Although scholars might hold some reservations about whether a shared decision-making model even promotes or expands the patient’s autonomy,55 my takeaway from such a proposal is that it at least introduces a regulatory step in medical decision-making, which treats many relevant parties as holding equitable stakes in the decision-making. Neither patients nor physicians are given the sole decision-making power; rather, their relationship is utilized to collaborate on and negotiate about a medical decision. Since epistemic practices strongly affect these relationships, the success of a more relational bioethical model of choice-making like SDM will surely be enhanced by reforms in health care that aim to achieve epistemic justice or at the very least minimize incidences of epistemic injustice.

CO NCLUSION In this chapter, I reviewed various formats and manifestations of epistemic injustice in health care through different medical case studies. I then explained how epistemic injustice harms the individual agents, erodes patient–doctor and patient–institution relationships, and disservices the medical community. Finally, I surveyed ameliorative strategies that have been proposed in the literature, which included emphasizing patient views. I then suggested that we tackle the problem of epistemic injustice in health care by treating it as relevant to questions related to the acquisition of patient consent, autonomy, and shared decision-making in medicine—the prevailing models of medical decision-making in bioethics. I hope that my observations captured why it is so urgent for us to rectify epistemic injustices in health care and showed how mitigating epistemic injustice can be done in tandem with the task of improving

how we conceptualize bioethical decision-making frameworks like consent, autonomy, and shared decision-making.

N OT E S 1. Miranda Fricker, “Evolving Concepts of Epistemic Injustice,” in The Routledge Handbook of Epistemic Injustice, eds. Ian James Kidd, José Medina, and Gaile Pohlhaus Jr. (Oxford: Routledge, 2017), 1. 2.  Havi Carel and Ian Kidd, “Epistemic Injustice in Healthcare: A Philosophical Analysis,” Medicine, Health Care, and Philosophy 17 (2014): 530. 3.  Ian Kidd and Havi Carel, “Epistemic Injustice and Illness,” Journal of Applied Philosophy 34, no. 2 (2017): 173. 4. Ibid. 5. Lauren Freeman, “Confronting Diminished Epistemic Privilege and Epistemic Injustice in Pregnancy by Challenging a ‘Panoptics of the Womb,’” The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine 40, no. 1 (2015): 56. 6.  Freeman, “Confronting Diminished Epistemic Privilege and Epistemic Injustice,” 53. 7.  Freeman, “Confronting Diminished Epistemic Privilege and Epistemic Injustice,” 4. 8.  Miranda Fricker, Epistemic Injustice: Power and the Ethics of Knowing (Oxford: Oxford University Press, 2007), 151. 9.  Debra L. Jackson, “‘Me Too’: Epistemic Injustice and the Struggle for Recognition,” Feminist Philosophy Quarterly 4, no. 4 (2018): 9. 10.  Kidd and Carel, “Epistemic Injustice and Illness,” 185. 11. “Endometriosis,” NHS, last reviewed January 18, 2019, https://www.nhs.uk/conditions/endometriosis/. 12.  Arianne Shahvsi, “Medicine Is Patriarchal, But Alternative Medicine Is Not the Answer,” Bioethical Inquiry 16 (2019): 100. 13.  C. E. Jones, “The Pain of Endo Existence: Toward a Feminist Disability Studies Reading of Endometriosis,” Hypatia 31 (2016): 557. 14.  E. Whelan, “‘No One Agrees Except for Those of Us Who Have It’: Endometriosis Patients as an Epistemological Community,” Sociology of Health & Illness 29 (2007): 957. 15.  “What Is Depression?,” American Psychiatric Association, accessed October 1, 2021, https://www.psychiatry .org/patients-families/depression/what-is-depression. 16. Alistair Wardrope, “Medicalization and Epistemic Injustice,” Medicine, Health Care, and Philosophy 18 (2015): 342. 17.  Wardrope, “Medicalization and Epistemic Injustice,” 350. 18. Jake Jackson, “Patronizing Depression: Epistemic Injustice, Stigmatizing Attitudes, and the Need for Empathy,” Journal of Social Philosophy 48, no. 3 (2017): 363. E pistemic I nj u stice in H ealth C a r e 

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19.  Lucienne Spencer and Havi Carel, “‘Isn’t Everyone a Little OCD?’: The Epistemic Harms of Wrongful Depathologization,” Philosophy of Medicine 2, no. 1 (2021): 2. 20.  Jackson, “Patronizing Depression,” 366. 21.  Jackson, “Patronizing Depression,” 368. 22.  Rena Kurs and Alexander Grinshpoon, “Vulnerability of Individuals with Mental Disorders to Epistemic Injustice in Both Clinical and Social Domains,” Ethics & Behavior, 28, no. 4 (2018): 337. 23.  Jonathon Tomlinson, “Power, Prejudice and Professionalism: Fat Politics and Medical Education,” in Handbook of Primary Care Ethics, 1st ed., eds. A. Papanikitas and J. Spicer (London: CRC Press, 2017), 161. 24.  David P. Miller et al., “Are Medical Students Aware of Their Anti-obesity Bias?,” Academic Medicine 88, no. 7 (2013): 978. 25. Breanne Fahs, “Fat and Furious: Interrogating Fat Phobia and Nurturing Resistance in Medical Framings of Fat Bodies,” Women’s Reproductive Health 6, no. 4 (2019): 246. 26.  Tomlinson, “Power, Prejudice and Professionalism,” 162. 27.  Tomlinson, “Power, Prejudice and Professionalism,” 161. 28.  C. Tapking et al., “Influence of Body Mass Index and Gender on Stigmatization of Obesity,” Obesity Surgery 30 (2020): 4927. 29.  J. A. Sabin, M. Marini, and B. A. Nosek, “Implicit and Explicit Anti-Fat Bias among a Large Sample of Medical Doctors by BMI, Race/Ethnicity and Gender,” PLoS ONE 7, no. 11 (2012): 2. 30.  David M. Peña-Guzmán and Joel Michael Reynolds, “The Harm of Ableism: Medical Error and Epistemic Injustice,” Kennedy Institute of Ethics Journal 29, no. 3 (2019): 235. 31. R. Rubin, “Addressing Medicine’s Bias against Patients Who Are Overweight,” JAMA 32, no. 10 (2019): 925. 32. Felicity Callard and Elisa Perego, “How and Why Patients Made Long Covid,” Social Science and Medicine 268 (2021): 1. 33.  Callard and Perego, “How and Why Patients Made Long Covid,” 2. 34.  Callard and Perego, “How and Why Patients Made Long Covid,” 3. 35.  Vivian V. Altiery De Jesus et al., “Listening to Long COVID: Epistemic Injustice and COVID-19 Morbidity,” OSF Preprints (2021): 4. 36. Ibid. 37.  WHO, “A Clinical Case Definition of Post COVID-19 Condition by a Delphi Consensus, 6 October 2021” (2021): 1, https://www.who.int/publications/i/item/WHO-2019 -nCoV-Post_COVID-19_condition-Clinical_case_defini tion-2021.1.

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38.  C. Blease, H. Carel, and K. Geraghty, “Epistemic Injustice in Healthcare Encounters: Evidence from Chronic Fatigue Syndrome,” Journal of Medical Ethics 43 (2017): 555. 39.  Felicity Goodyear-Smith and Stephen Buetow, “Power Issues in the Doctor–Patient Relationship,” Health Care Analysis 9 (2001): 451. 40.  Ian Kidd and Havi Carel, “Healthcare Practice, Epistemic Injustice, and Naturalism,” in Harms and Wrongs in Epistemic Practice, eds. S. Barker, C. Crerar, and T. S. Goetze (Cambridge: Cambridge University Press, 2018): 212. 41.  K. M. Heggen and H. Berg, “Epistemic Injustice in the Age of Evidence-Based Practice: The Case of Fibromyalgia,” Humanities and Social Sciences Communications 8 (2021): 5. 42. Carel and Kidd, “Healthcare Practice, Epistemic Injustice, and Naturalism,” 212. 43. Ryoa Chung, “Structural Health Vulnerability: Health Inequalities, Structural and Epistemic Injustice,” Journal of Social Philosophy 52, no. 2 (2021): 215. 44.  Wardrope, “Medicalization and Epistemic Injustice,” 351. 45. Rageshri Dhairyawan, “The Medical Practice of Silencing,” The Lancet 398, no. 10298 (2021): 383. 46.  Leah Teresa Rosen, “Mapping Out Epistemic Justice in the Clinical Space: Using Narrative Techniques to Affirm Patients as Knowers,” Philosophy, Ethics, and Humanities in Medicine 16 (2021): 5. 47.  A. Bueter, “Epistemic Injustice and Psychiatric Classification,” Philosophy of Science 86 (December 2019): 1072. 48.  C. Blease et al., “Patients, Clinicians and Open Notes: Information Blocking as a Case of Epistemic Injustice,” Journal of Medical Ethics (2021): 5. 49. Faik Kurtulmus, “The Epistemic Basic Structure,” Journal of Applied Philosophy 37, no. 5 (2020): 818. 50. Jeremy Sugarman, “Informed Consent, Shared Decision-Making, and Complementary and Alternative Medicine,” The Journal of Law, Medicine, and Ethics 31, no. 2 (2003): 247. 51.  A. Knight and J. Miller, “Prenatal Genetic Screening, Epistemic Justice, and Reproductive Autonomy,” Hypatia 36, no. 1 (2021): 2. 52. Ibid. 53.  Jonathan Lewis, “Getting Obligations Right: Autonomy and Shared Decision making,” Journal of Applied Philosophy 37, no. 1 (2020): 118. 54. Emma Cave, “Selecting Treatment Options and Choosing between Them: Delineating Patient and Professional Autonomy in Shared Decision-Making,” Health Care Analysis 28 (2020): 18. 55. Lars Sandman and Christian Munthe, “Shared Decision-making and Patient Autonomy,” Theoretical Medicine and Bioethics 30 (2009): 290.

CHAPTER 10

Bias in Medicine Mayli Mertens

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ur understanding of disease, a cell, a patient, biology, or the world hinges on the lenses and frames through which we make our observations. A different perspective on the same reality can greatly impact the conclusions we draw. Yet, perspective taking is inevitable as our brains and sensory systems, both human and artificial, have physical and cognitive limitations and we are forced to select one way or another. Much of that selection process is hidden, however, and does not follow from conscious deliberation. The goal of this chapter’s overview is to provide an overall, albeit incomplete, sense of the ways in which medical research and practice might be impacted by these unreasoned inclinations that drive our understanding one way rather than another. To the extent that one perspective gives an unfair advantage over all others, these inclinations can be understood as biases, and these can lead to unfair practices. One may wonder why some find it necessary to medically correct the genitals of intersex infants without their consent, or why female circumcision is perceived so differently from its male counterpart. Why do doctors on average prescribe more pain medication to white people than to people of color? How do supposed “objective” technologies end up disadvantaging certain groups of patients and not others? Why are a women’s self-reported symptoms not taken into account as seriously as when her male partner

reports the symptoms? Why are some patients considered “difficult,” and why does that affect their treatment negatively? Answers to these questions are all defined by the biases and cognitive limitations that influence medical understanding and the clinical decisions and practices they inform.

C AT E G O R I Z AT I O N I S S U E S A N D S C I E N T I FI C B I A S Biases are typically due to cognitive, cultural, and contextual factors but, most often, a combination of those. This makes clean categorization difficult. Furthermore, as we shall see, categorizations are in themselves a kind of lens or frame through which we analyze our observations and, as such, we should be weary of mindlessly adopting them beyond the purpose for which they were intended. The first step forward is then to acknowledge and understand the way categories shape our perspective. Let us begin with health care’s fundamental distinction between health and disease.1 The concept of disease is complex and far from straightforward. Many scholars debate diverging definitions of and varying perspectives on human malady,2 and it is difficult to give a coherent and consistent synthesis, though experts like Bjørn Hofmann certainly try.3 A distinction between disease and illness exists since 103

the 1950s,4 which was first complemented with the concept of sickness in 1967.5 Typically, a medical professional will be able to detect and treat disease in a person feeling ill, while society can attribute to a person the status of being sick.6 Such distinctions are helpful because they make very messy subjects workable but, as such, these different views on malady in general shape our understanding of health and the ways to achieve it. Importantly, they impact what we consider malady to begin with. Similarly, naturalist versus normativist theories of disease7 change our definitions of, and responses to, specific conditions. The former theory has allowed medicalization of, for example, pregnancy, excellence, and homosexuality by considering them diseases,8 whereas the latter has led to views of aging, shyness, and sadness as disease.9 The classification of mental disorders in the Diagnostic and Statistical Manual of Mental Disorders, otherwise known as the DSM, is commonly critiqued for similar reasons, since it hinges on ideas of normality versus abnormality.10 It is important to recognize technology’s profound role in how we view malady and the medicalization of specific human conditions.11 As Friis emphasizes in chapter 18, our understanding of human biology and health is mediated by the medical tools we use. Technology is furthermore known to reduce disability, increase quality of life, prolong health, and change what we consider avoidable death.12 Even the definition of death itself, with the advent of mechanical breathing and life-sustaining technologies, has evolved from cardiopulmonary death to include brain death. As such, categories may change with each innovation. This means that, as helpful as classifications may be for their intended purpose, they may be just as limited in time as they are in scope. Although scientific classifications are thus to be used for specific purposes, at specific times, they easily invite a kind of scientific bias, typically characterized by overconfidence in their value. To make categories more resilient against such bias, it helps to anticipate the unintended effects of a specific classification when designing it. In contrast, failing to understand the far-reaching consequences that scientific classifications may have can give disastrous results. 104 

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With the DSM-5, patients worried about having a medical illness will often be diagnosed with somatic symptom disorder, normal grief will be misidentified as major depressive disorder, the forgetfulness of old age will be confused with mild neurocognitive disorder, temper tantrums will be labeled disruptive mood dysregulation disorder, overeating will become binge eating disorder, and the already overused diagnosis of attention-deficit disorder will be even easier to apply.13 Once categories have been accepted by the scientific community, it is difficult to halt their use in practice— even when the categories’ influence on professional judgment turns out problematic or inconsistent. One reason for this is that medical practice typically lags behind on implementing new scientific findings and even more so, on reevaluations. Translational medicine has gained a lot of ground in medical research as it was intended precisely to facilitate faster implementation of new diagnostic tools and medical treatments. Unfortunately, the multi-disciplinary “bench-tobedside” and “bedside-to-bench” approach is dependent on close collaboration between researchers and practitioners, which in turn further blurs the research practice distinction. In my previous work, I’ve named this dance across the threshold between research and care, between experimentation and implementation, and between future and past innovations liminal innovation practices.14 Liminal innovation practices are prone to confirmation bias and feedback loops, which can undermine the validity of scientific research. As such, the boundary blurring in such practices exacerbates the overconfidence in new scientific findings— thereby exacerbating scientific bias—especially in the teaching and university hospitals where clinical research takes place. Classifications also elicit bias when they have normative evaluations built in. The latter are often implicit like with the normality versus abnormality distinction. Yet sometimes they are made explicit even within the categorization. Take, for instance, the cerebral performance category (CPC) used to measure

the extent of brain damage in patients in a coma after traumatic brain injury, cardiac arrest, or other encephalopathy (meaning damage or disease affecting the brain). The five categories range from “no neurological damage” to “death.” Yet, in prognostic research and clinical practice, the five categories are dichotomized in “good outcome” and “poor outcome.” These are clearly normative evaluations, but they are also unstable. Until 2006, good outcomes included moderate as well as severe neurological damage with only death and disorders of consciousness (like vegetative state/unresponsive wakeful syndrome and minimally conscious state) as poor outcomes. After 2006, most studies and practices started including severe neurological damage (or CPC3) in the poor outcome classification.15 Confounding normative and physiological factors makes it much harder to test the accuracy of the classification and—as the change in classification demonstrates—dichotomizing categories invites miscategorization, especially of outcomes that are in the middle of the spectrum.16 Miscategorizations easily happen when we lack sufficient categories to map real-life diversity, as the dichotomy described above also exemplifies. Take the widespread view on sex as a binary category. While the questionable limitations of such categorization fuel many public debates in a variety of fields, the binary standard is still deeply entrenched in the world of medicine. Surgeries on newborns with intersex genitalia meant to alter their ambiguous biological sex to one that fits the binary may increasingly be frowned upon in some Western countries but continue to be practiced in the rest of the world (see also Earp’s discussion in chapter 26). Even the distinction between sex and gender is underappreciated in medical practice and research as the cisgender standard is often taken for granted. Recent research published by Nature claims that sex can correctly be identified by machine learning algorithms analyzing brain waves from electroencephalogram (EEG) measurements.17 Yet, as ChoGlueck and Lloyd point out in chapter 11, “Ideas of female-typical and male-typical brains are misleading.” Indeed, the article in Nature talks about “male and female brains,”18 seemingly assuming the brain’s

direct reflection of the biological sex, an assumption that was already built into the study from the start but is now served as part of the conclusion. Aside from signaling a lack of scientific curiosity and rigor, holding on to such deeply entrenched assumptions in medicine can have far-reaching effects. In some countries, sexual activity between two members of the same sex is illegal, and punishments range from fines and imprisonment to execution.19 In Iran, gender non-conformity or same-sex attraction is considered part of a supposed “gender identity disorder,” which can be “cured.”20 As such, the Iranian government gives citizens the right to have their gender identity recognized by law but only if it matches their biological sex. The sex assigned at birth can thus be changed only after undergoing sex reassignment surgery. Set on keeping the cisgender categories (and especially heteronormativity) intact, their state-funded healthcare system will even financially support the surgery, if that’s what it takes to “fix” the categorization issue. Just like with the non-consensual sex-assigning surgeries on intersex infants, this is a typical example where—to quote Aldous Huxley—“scien[ce] will prepare the bed on which mankind must lie; and if mankind doesn’t fit—well, that will be just too bad for mankind. There will have to be some stretching and a bit of amputations as have been going on ever since applied science really got going into its stride.”21 As stated at the beginning of the section, while categories have enormous impact, categorizing may be inevitable. Humans do it consciously and unconsciously. To be aware of our categorizations and the magnitude of their impact is a first step, and when reality and categorizations clash, we may want to seriously rethink our assumptions.

T H E H I DDE N C U R R I C U LU M, S T E R E OT YP E S, A N D I M P L I C I T B I AS Categorizations and the biases they invite, along with all other types of bias, seep through clinical research and practice where they materialize or reoccur in the form of implicit biases, stereotypes, and often as part of a hidden curriculum. B ias in M edicine 

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The hidden curriculum, as first identified by Jackson who described education as a socialization process,22 has long been recognized to refer to lessons that are learned even when they are not really taught—at least not intentionally.23 In medicine, the hidden curriculum is substantial, especially when it comes to ethics training. In an ideal world, medical students would get significant ethics training during their education. Indeed, cases are made worldwide for an increase of medical humanities in the curriculum. Yet, as it stands, the lack of medical and clinical ethics training is rampant. Ethics are commonly “taught” by the bedside, as part of hidden curricula. Yet, these lessons are not always in line with the core values of the profession taught in medical school. The American College of Physicians, in their position paper, explain: Hidden curricula are lessons learned that are embedded in culture and are not explicitly intended. Medicine’s hidden curriculum powerfully influences student and resident norms and values. More than half of 2016 medical school graduates said that they experienced “disconnects between what [they were] taught about professional behaviors/attitudes and what [they saw] being demonstrated by faculty.”24 Learners receive conflicting messages about ethics and professionalism when the actions or words of role models are not consistent with the values espoused by the profession.25 As such, implicit lessons based on practice and experience rather than deliberate ethics training can lead to all sorts of malpractice. As the next chapter illustrates, embedded racist and sexist attitudes lay at the foundation of historical malpractice cases like syphilis studies in Guatemala and Tuskegee, Alabama, and coronary heart disease studies which involved no women. Stereotyping—especially when disguised as being medically relevant—continues to drive the teaching and learning of such damaging attitudes. Negative biases based on race, ethnicity, age, weight, religion, and sexual identity, among 106 

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others, are still frequently reported, and they typically “influence decision-making and aggravate healthcare disparities and patient-physician mistrust,” as shown by Capers and colleagues.26 In their call for “bias and racism teaching rounds,” they review real-life cases from academic medical centers illustrating how, even with the best intentions, physicians and health care workers can put patients at risk because of existing biases. As Chapman and colleagues27 state, even if stereotypes are not consciously endorsed, their mere existence influences how information about an individual is processed. Unintended biases in decision-making, so called implicit bias, is then passed on to the next generation of clinicians, often through the hidden curriculum. This way, implicit bias is perpetuated, greatly affecting practice. As a result, despite the medical profession’s core value to provide equal treatment to all patients, great disparities in health care remain.28 In their systematic review, FitzGerald and Hurst29 list, for example, significant negative differences in treatment choice for older patients and negative attitudes impacting treatment toward the disabled, psychiatric patients, AIDS patients, obese patients, and any patients regarded as contributing to their injury or illness. They also list strong evidence of explicit and implicit biases against Latinos and African American or other Black patients, as well as explicit and implicit anti-fat biases. Chapman and colleagues30 list similar tendencies in their review of physicians and implicit bias. Their study’s focus on only implicit bias proves the article’s conclusion that—even unwittingly—doctors perpetuate health care disparities. Such disparities can take dramatic proportions, limiting access to kidney transplants31 and cardiac procedures,32 for instance. In their article, aptly titled “Paved with Good Intentions,”’ van Ryn and Fu33 review and analyze disparities in specialty care, pain assessment and pain treatment, mental health services, and child welfare and at-risk youths. NonWhites were found to be at significantly higher risk for inadequate or no pain assessment or [pain] control than their White counterparts in a variety of

situations, including emergency treatment for long bone fractures,34 nonmalignant pain in a nursing home,35 treatments for cancer-related pain,36 and evaluation of chest pain emergencies.37,38 Physicians were more likely to negatively deviate from the standard of care for African Americans and Latinos who were “found to be less likely than Whites to receive guideline-adherent treatment39 and follow-up.”40 In the United States as well as in the United Kingdom, and independent of clinical factors, non-Whites are “more likely to be prescribed antipsychotic medication and to be involuntarily hospitalized and placed in seclusion once hospitalized than their White counterparts.”41 Clearly, these are not small, subtle differences in treatment. Van Ryn and Fu further indicate that the effects of social class are equally powerful as those of race or ethnicity, and that combinations of the two seem more damaging still.42 While their effect on health care is undeniable, the stereotypes and biases discussed here are present in all domains of society and thus not excluded to medical practice. One professional bias specific to health care, however, is that of the so-called difficult patient. “Angry, defensive, frightened, or resistant patients” are often labeled as difficult. This label includes manipulative, somatizing, and even grieving patients, as well as the habitual patients known as “frequent fliers.”43 Together, they make up about 15 percent of the patient population.44 This is significant because, even though varying labels and definitions exist for this category of patients, they all flag a potential difficulty for the physician to form a normal therapeutic relationship with the patient. This may in turn cause all sorts of ethical issues, especially with regard to autonomy and resource distribution.45 One patient in an interview explains how, after asking “too many questions” about her medication, she was told that she (implying her illness) had already “cost the French community enough and that she should stop wasting everyone’s time” which caused her to defend herself, explaining that her foreign insurance covered her entire bill.46

A quick Google search shows just how common the label “difficult patient” is, even in scientific publications, and yet, the term really refers to difficult patient encounters or, more accurately still, difficult patient–physician interactions. Part of these difficult interactions, as first modeled by Adams and Murray (1998), are indeed due to patient characteristics but equally relevant are physician characteristics and environmental factors. Overwork and sleep deprivation are common in health care, and physicians who are fatigued, burned out, stressed, or frustrated are more likely to contribute to difficult interactions. Not coincidentally, the same factors also contribute to decreased cognitive ability and, thus, as we will see shortly—more bias. Character traits like being high-achieving, over-committed, dogmatic, or arrogant do not help difficult interactions either. The environment or situation itself can cause or contribute to difficult interactions too. Patients by definition are vulnerable and dependent when sick, whereas physicians are in a position of power. Hospitals can be loud, stressful, and there may be a lack of privacy. Think also of communication issues, for instance, when breaking bad news or when physician and patient do not share a common language—either due to education or literacy levels or an actual language barrier that requires a translator. Simply categorizing a patient as difficult is clearly an oversimplification and a prejudice to be avoided. In sum, stereotypes, implicit bias and deeply entrenched prejudices that are often portrayed as being medically relevant are perpetuated, often unknowingly, through the hidden curriculum and by example, from mentor to mentee, explicitly or implicitly.

U N C E R TA I N T Y, CO G N I T I V E B I A S, AND HEURISTICS Implicit bias is not only grounded in false beliefs or prejudice, racism, sexism, other discrimination, or stereotypes. Much of our implicit biases stem from limitations in our cognitive capacities and the systems we rely on for rapid decision-making.

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A greater understanding of how our brains process information can help in reducing errors that are due to cognitive biases. First, it helps to understand that the brain has different ways of working. Consider the dual process theory which Kahneman’s book famously describes as “Thinking Fast and Slow.”47 The idea of a fast and a slow cognitive model was first introduced in terms of System 1 and System 2 by Stanovich and West.48 System 1 is intuitive and impulsive and therefore fast, whereas System 2 is reflective and analytic and thus requires effort and impulse control, which makes it more time-consuming.49 Grasping the strengths and weaknesses of the fast model requires an understanding of how association and priming work, especially since the cascading of associations in our brain happens mostly subconsciously. To apply one of Kahneman’s examples to the clinical setting, if a surgeon is about to prep for surgery and, while she is scrubbing, you show her a sign spelling SO_P, she’s much more likely to have SOAP come to mind than when she’s about to go on a lunch break. The sign SO_P may then not just prompt SOUP instead; the surgeon may even be more likely to order soup for lunch than had she not seen the sign. This is one reason why a diagnostic process testing different theories, trial-anderror style, is often subject to cognitive biases like anchoring, availability, and confirmation bias. Our cognition can thus be limited by the way our brains process information and produce knowledge, which are furthermore influenced by the normative assumptions that we, often unknowingly, take for granted. Medical practice tends to be quite consequentialist in its normative evaluations. What we consider, in medical decision-making, a good course of action or a bad one, is typically connected to the expected outcome of those actions. In other words, we evaluate actions based on the way they impact the patient’s health. However, in medicine, as with many realms of life, there is a lot of uncertainty about which action will bring about what outcome. Furthermore, as I have previously argued, this uncertainty is a confounding of two different types of uncertainty.50 I call the uncertainty about what physiological outcome 108 

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can be achieved physiological uncertainty. In addition, there may be uncertainty about whether or not that physiological outcome will be regarded as desirable. Uncertainty about the desirability of the physiological outcome, I call normative uncertainty. For instance, a well-intended physician may consider the successful implantation of a cochlear implant to resolve deafness to be a desirable outcome for their patient. Yet, a person from the deaf community may disagree. Or, they may initially agree because they too assume that hearing will improve their quality of life as it has for others before them. And yet, once faced with the experience of hearing, they may find it insufferable and want to reverse the procedure, which has now been determined undesirable. Clearly, there is normative uncertainty about the outcome. Yet, not knowing whether or not the cochlear implantation will be successful in ending deafness and enable hearing is a matter of physiological uncertainty. Both physiological and normative uncertainties invite biased reasoning. When physiological uncertainty about what outcome can be achieved is high, a move away from consequentialist to a more deontological approach is inevitable—as the intentions and motivations for specific actions gain importance. However, intent and motives depend to a large extent on the worldview and moral framework that informs them and—as exemplified by the changed evaluation of severe neurological damage before and after 2006—these are not fixed. In fact, normative uncertainty stems from the variety and instability of our normative evaluations and the views that inform them. Such perspectives are never neutral, and while it may be inevitable to look at the world through specific lenses, technologically mediated or not, it is crucial that medical practitioners and researchers recognize and be aware of the lens through which they view the world and how this may affect their decision-making. Furthermore, a clear view on one’s own perspective makes it easier to remain aware of the fact that other valid perspectives exist. The physician in our previous example could, for instance, be aware of the different evaluations of cochlear implantations by the deaf community and engage in conversation with each recipient and include their input in the

decision-making process. This approach would also reduce the risk of epistemic injustice, as discussed by Ji-Young Lee in the previous chapter. Just as our cognitive capacities are impacted by our views of the world and the normative uncertainty they are subject to, the way we see and think about the world is influenced by our brain’s attempt to simplify the vast amount of information it has to handle. When we subconsciously process and interpret the information in the world around us, especially when relying on System 1, we can make systematic cognitive errors that affect our judgments and decisions. These systematic patterns of error are known as cognitive biases. They are due to the mind’s limitations, personal intentions, emotions, social pressures, and, importantly, to mental shortcuts known as heuristics. Medical decision-making often requires significant speed. Decisions made in hospitals are typically high-risk and urgent, especially in emergency medicine, surgery, and intensive care where the immediate stakes are highest. While a fast response is usually necessary, the available information is often insufficient or lacking altogether. Running tests and collecting more information is not always possible given the limited time. Physiological uncertainty may be inevitable and trial and error may thus be warranted. In order to be able to “jump to conclusions” quickly, practitioners must often rely on rules of thumb. Heuristics can be surprisingly accurate, and thus it makes sense to rely on the mental shortcuts. Furthermore, medical professionals automatically integrate past experience, and if they would have to rethink a similar problem all over again, every time it occurs, they would become extremely inefficient. Considered “a fundamental and important part of any expert behavior,” heuristics-based decisions driven by intuition51 and partial information52 are therefore endorsed and even encouraged. However, such decisions rely heavily on System 1 and as such offer fertile ground for cognitive biases that can lead to diagnostic inaccuracies and suboptimal management.53 Clinical reasoning is subject to more cognitive biases than we can cover in this chapter. Croskerry compiled a list of thirty-two cognitive biases—and

strategies to mitigate them—in diagnostic practice alone.54 A literature review by Saposnik and colleagues showed that twenty studies examining cognitive bias in clinical decision-making evaluated a total of nineteen different ones.55 Very common were overconfidence, confirmation bias, the anchoring effect, information, and availability bias. All of these are tendencies to stick to the familiar and what one already knows. Curiosity and a willingness to be wrong are key in changing this attitude. Because they are grounded in repetition, heuristics and implicit biases are also strongly affected by training and thus, by the hidden curriculum. Their impact is not limited to cognitive patterns of medical understanding but affects moral understanding as well. As illustrated by Bruce, medical students who are pressured into performing unconsented intimate exams on unconscious patients for training purposes often feel, initially, that these practices conflict with their moral compass and the professional standards they were taught.56 And yet, studies show that after completion of obstetrics or gynecology training, students were significantly less likely to obtain informed consent from women,57 that participating in “exams without detailed consent on anesthetized patients desensitized doctors about the need for patients to grant consent,”58 and that mere observation of unethically behavior would increasingly lead to behaving unethical oneself.59 The upside of these tendencies in training is that, with sufficient institutional will and innovation, students’ cognitive and normative habits can be trained in the other direction too. In short, physicians can rely on the mental shortcuts that they develop over time, for instance by recognizing patterns of disease. Heuristics allow complex decisions to be made quickly, and they help process and integrate large amounts of information by focusing attention on salient points. This is useful because rapid-fire, complex decision-making is often the norm in busy clinical practices. However, clinical practice is inherently uncertain and, when relying on heuristics, medical professionals should remain aware of the risk the cognitive shortcuts pose and train to become more resilient against cognitive biases.

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AR TIFICIAL I NT E L L I G E NCE AND ALGORI T H MI C B I A S In the same way physicians naturally develop mental shortcuts over time by recognizing patterns of disease, artificial cognition develops from pattern recognition also. Artificial Intelligence (AI) systems are trained, typically, through machine learning whereby an algorithm recognizes patterns in past information and uses that insight to make predictions when fed with new information. The difference of course is that an artificially intelligent system bases its pattern recognition on an amount of data and at a speed of processing that pulverizes any human processing capacity. Take, for instance, Google’s Inception V3, the convolutional neural network architecture used to identify (among many other things) diabetic retinopathy.60 With its 24 million parameters, the pre-trained image recognition model is likely to outperform humans. The flipside is that, unlike human’s capacity to stop and ponder or reflect on the process, artificial cognition is less likely to retrace its steps and catch errors. And yet, the potential errors are multiple. While I cannot cover all of them here, I am hoping the following introductory overview can offer a guide for deeper exploration. In their “framework for understanding sources of harm throughout the machine learning life cycle” Suresh and Guttag identify seven distinct sources of bias that cause harm.61 Again, this is but one way to categorize biases, and other scholars have made other excellent categorizations. This particular framework’s distinction is useful, particularly for checking each step of the algorithmic development when building an algorithm through machine learning. Developers and practitioners can look to identify historical, representation, and measurement biases at the level of data collection or data generation and check the phases of model building and implementation for learning, aggregation, evaluation, and deployment biases. The harms that follow from such biases can be distinguished as allocative harms or representational harms.62 The former keeps specific groups from accessing resources or benefits, the latter harms specific groups by stigmatizing or stereotyping them. 110 

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Of course, algorithms are not necessarily developed through machine learning. Medicine has a long tradition of support calculators for clinical decision-making, long before the use of automation and artificial intelligence. When analyzing the potential for algorithmic bias in medical research and practice, we may thus want to go broader. Friedman and Nissenbaum distinguish three categories of “bias in computer systems,” namely preexisting, technological, and emergent.63 “Preexisting bias has its roots in social institutions, practices, and attitudes. Technical bias arises from technical constraints or considerations. Emergent bias arises in a context of use.”64 Each of the seven sources of bias in the Suresh and Guttag framework falls under at least one of those three. One of the most commonly noted problems often referred to as “bias in, bias out” is that the outcomes of computation can only be as unbiased as the datasets on which they are based. Whether manually collected or automatically generated, datasets are vulnerable to any and all of the preexisting bias that are already present in society, and more specifically in health care. As discussed in the previous sections, these include biased categories, stereotypes, and implicit biases, which may lead to allocative harms and to further representational harm when reinforced. In Suresh and Guttag’s model, these typically fall under historical biases, although I will show how they may further lead to measurement bias when “choosing, collecting, or computing features and labels.”65 On the one hand, measurement bias can occur because of variation in how one measures. Let’s say doctors in two different hospitals are monitoring surgical errors as a proxy for surgical quality. If the doctors in one hospital are more stringent and frequent in their measurement, they may record more mistakes, regardless of whether they actually make more. And, as many have rightly pointed out, their measurements may lead to a self-fulfilling feedback loop where the apparent high error rate leads to increased monitoring, which again results in more mistakes recorded.66 On the other hand, the proxy can be overly simplistic, inaccurate, or a proxy for another, more appropriate indicator. Kathleen Creel, in her talk on

“Stereotypes, Personalization, and Risk in Medical AI,” talked about race as it is used in statistical generalizations and argued, like Vyas and colleagues,67 that there may simply be a more fine-grained variable (often more personalized to the patient) that has more predictive success. For example, the VBAC score, a non-AI predictive calculator for safe Vaginal Birth After Cesarean, used to have race as one of the parameters. After race was shown to be a poor proxy, it was replaced for the more relevant indicator “chronic hypertension.”68 Creel argues for the use of AI to find better proxies, or to find categories that are more clinically relevant. Genin and Grote make similar suggestions.69 Pervasive pre-existing bias can affect many, if not all, layers of a predictive algorithm. For instance, if the categories are overly simplified due to pre-existing bias, like with the previously mentioned male versus female EEGs, then historical bias is causing further measurement bias. In this specific case, the same suppositions on cisgender categories furthermore caused a representation bias, seeing that there were no intersex and likely no transpersons included in the population. And, if there were any, it was unknown to the researchers, and the patients were certainly not identified as such in the dataset. Dominant views can be so powerful in framing reality that one may not even notice one is viewing reality through cultural goggles—a bit like the fish in the joke, who, when asked, “what the water is like today?,” responded, “what is water?” Thus, while representation bias is caused by some part of the population not being represented in the training data, the underrepresentation is often directly or indirectly due to pervasive bias elsewhere in the system. For instance, when an algorithm developed to detect skin cancer was trained on data pertaining to an all-white population, it will perform poorly when used on data of dark-skinned patients.70 It seems this problem could easily be avoided by diversifying the training data. However, Kaushal and colleagues showed that “algorithms trained on US patient data were disproportionally trained on cohorts from California, Massachusetts, and New York, with little or no representation from the

remaining 47 states.”71 Since these states have “economic, educational, social, behavioral, ethnic, and cultural features” that are very different from the rest of the country, their data generalizes poorly.72 For instance, most studies are conducted in states that have very low percentages of African Americans, and states with the highest percentage of African Americans conducted zero machine learning trials. The problem of representation bias is well acknowledged, and datasets are therefore increasingly examined to prevent underrepresentation. In contrast, the risk of underrepresentation in human cognition and pattern recognition is often underestimated. To compare, take an intensivist whose expertise on end-of-life decisions for patients with encephalopathy in intensive care is substantial. Yet, if this intensivist’s experience was based solely on their work in a neonatal intensive care unit, their reasoning and subsequent decision-making about whether or not to withdraw life-sustaining treatment for elderly patients with encephalopathy could be problematic. The physician’s experience lacks representation of patients that aren’t newly born, and their expertise may not generalize well for a different subset of patients, even if they present with the same pathology. Yet, because one physician’s expertise is usually not transferred to a different patient group, issues of underrepresentation in humans’ imperfect datasets are typically left unexamined. Overall, the biases present in the data generation phase easily compare to those present in human cognition, and the solutions, therefore, are similar too. What worsens so-called biased data in artificial cognition versus human cognition is the magnitude of its impact. Unlike one doctor’s mistake harming a single patient, one flawed algorithm can cause systemic iatrogenic harm.73 For instance, IBM’s algorithm for cancer treatment recommendation, known as Watson for oncology, erroneously recommended using “bevacizumab in a patient with severe bleeding, which represents an explicit contraindication.”74 Since Watson for oncology is used by hundreds of hospitals around the world to assist physicians in selecting the right treatment, “the potential harm to patients and thus for medical malpractice”75 is vast. When machine B ias in M edicine 

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learning is vulnerable to feedback loops, this further exacerbates the problem. Feedback loops are one of the ways in which iatrogenic harm can become systemic, and especially so, when they are fueled by self-fulfilling prophecies. Typically, when one has made a mistaken diagnosis or prognosis, one has the opportunity to learn from that mistake. Not so with self-fulfilling prophecies, which always end up true.76 Because diagnoses and prognoses typically form the basis of clinical decision-making, self-fulfilling prophecies in medicine make it difficult (if not impossible) to check retrospectively what would have happened if the prediction had not been made, acted upon, and ensured its own truth.77 The danger with reflexive predictions, that is, predictions that impact the outcome, is when the eventual outcomes are then used as validation for further inference about other patients.78 Generally, clinical decisions are vulnerable to all sorts of reflexive predictions, since the decisions based on the predictions are meant to affect the outcome through medical intervention. This makes it difficult to learn and evaluate the quality of a predictive algorithm. However, one is much more likely to discover that mistakes are potentially made in other reflexive predictions, because they don’t hide in truth. Take predictions that are self-defeating. There the result is opposite of what was predicted. For instance, when the prediction that someone will develop breast cancer informs the decision to have both breasts removed, the patient will not develop breast cancer. Clearly, this result is not an indication that they wouldn’t have developed breast cancer otherwise, and if the outcome was used for further inference anyway, the mistake would sooner or later become evident, unlike with self-fulfilling prophecies, which vindicates each prediction and reinforces trust in the algorithm every time. Such learning and evaluation biases keep our cognition, whether human or artificially mediated, entrenched in epistemic failure. They also demand that quality assurance processes look beyond accuracy.79 The risk of diagnostic and prognostic mistakes, also known as false-positives and false-negatives, is due to pervasive uncertainty, as discussed earlier. Predictions in medicine, whether made by humans or 112 

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with the aid of algorithms, thus tend to be probabilistic. Most AI algorithms then are probabilistic classifiers and, as with predictions made by humans, each probability can elicit a different response. Ideally, the response should keep in mind the patient’s values and attitudes toward risk, as argued by Birch and colleagues.80 They show that built-in decision thresholds do not leave room for context-sensitive value judgments and that the use of “AI allows the possibility of varying decision thresholds in a transparent way that demonstrates sensitivity”81 to varying risk-value profiles. While this is a worthwhile pursuit, the authors show that there are some implementation challenges. It would, for instance, require an in-depth exchange with the patient, similar to the one in the example of the physician discussing different risks regarding cochlear implantation. One additional issue is that profiling82 itself is a kind of prediction and, as I have indicated before, predictions of values and attitudes are subject to normative uncertainty.83 A patient’s risk aversion of either overdiagnosis or a missed diagnosis may vary over time and is likely to be dependent on the choice architecture that follows either option. Moreover, normative predictions can also lead to self-fulfilling prophecies and feedback loops.84 Nevertheless, Birch and colleagues are right to suggest that AI can help meet these challenges and improve on the one-size-fits-all model. Medicine has only just begun to see a glimpse of what AI could do for our understanding of biology and medicine. In 2020, when the deep neural network Alphafold, developed by DeepMind, managed to predict protein structures with 92.4 percent accuracy,85 it was believed to have successfully solved the protein-folding problem and considered the greatest scientific accomplishment since the discovery of the CRISPR-Cas9 gene-editing tool. It was also claimed to be “the most important achievement in AI—ever.”86 Evolutionary biologist Andrei Lupas predicted, “This will change medicine.”87 Yet, as discussed in more detail in chapter 28, the processes of deep neural networks are often opaque. This transparency issue, commonly referred to as “the black box problem,”88 cloaks the reasoning behind the accurate outcomes and therefore decreases epistemic understanding.

With the use of AI, algorithms will further enhance the computational support that physicians and clinical researchers rely on to further their knowledge and understanding. For AI to truly contribute to medical knowledge, however, it doesn’t suffice for algorithms to give us answers to questions. Knowledge requires understanding of how to get to those answers. Especially when AI-based predictors like Alphafold are bound to change human’s understanding of fundamental processes in biology, health, and disease, it is essential to keep in mind in what way such new understandings are framed—if knowable at all—and how understanding through artificial cognition, or a lack thereof, will further impact humanity’s worldview.

CO NCLUSION The overview in this chapter is meant to provide an introduction to biases in medical contexts. The references serve well as suggestions for further reading. Generally speaking, when an individual perceives the world, they are unlikely to perceive it “as is.” Rather, organic beings translate information that is absorbed through senses that are limited. First of all, not all available data can be captured or processed. Second, whether or not senses are enhanced through the use of technology, drugs, meditation, or other means, the information will still be processed against an existing background. People have beliefs that may be rational or irrational, assumptions that may be reasonable or unreasonable, they may have fair or unfair demands, valid or invalid needs, positive or negative attitudes, logical or illogical expectations, and past perceptions that may be accurate or inaccurate. In the end of the sense-making process, the translation becomes reality to the individual, whether justified or not. New, contradictory input can alter that reality after reinterpretation. Even if medicine relies on “neutral” observations of the physical body, by understanding the way cognitive processes work and being more aware of the limitations and pitfalls of such processes, one can be more curious about the validity of the perceptions

and open to correct or improve where necessary. Medical technologies and the use of artificial cognition have shown to affect medical understanding and help us get the answers we seek. If we recognize the limitations we face and are willing to be wrong, we are likely to ask better questions.

N OT E S 1.  For an overview, see Dominic Murphy, “Concepts of Disease and Health,” in The Stanford Encyclopedia of Philosophy, ed. Edward N. Zalta (Spring 2021), https://plato.stan ford.edu/archives/spr2021/entries/health-disease/. 2. For examples of varying perspectives on human malady, see Talcott Parsons, The Social System (Oxfordshire, UK: Routledge & Kegan Paul, 1951); Lester S. King, “What Is Disease?,” Philosophy of Science 21, no. 3 (July 1954): 193–203, https://doi.org/10.1086/287343; Horacio Fabrega Jr., “Concepts of Disease: Logical Features and Social Implications,” Perspectives in Biology and Medicine 15, no. 4 (Summer 1972): 583–616, https://doi.org/10.1353 /pbm.1972.0006; Karl Eduard Rothschuh, “Der Krankheitsbegriff. (Was ist Krankheit?),” Hippokrates 43, no. 1 (March 1972): 3–17; Peter Sedgwick, “Illness—Mental and Otherwise,” The Hastings Center Studies 1, no.3 (1973):19– 40, https://doi.org/10.2307/3527464; Marshall Marinker, “Why Make People Patients?,” Journal of Medical Ethics 1, no. s2 (July 1975): 81–84, http://dx.doi.org/10.1136 /jme.1.2.81; Frederick Kräupl Taylor, The Concepts of Illness, Disease and Morbus (Cambridge University Press, 1979); Mervyn Susser, “Disease, Illness, Sickness; Impairment, Disability and Handicap,” Psychological Medicine 20, no. 3 (August 1990): 471–73, doi:10.1017/S0033291700016974; Dietrich von Engelhardt, “Health and Disease—History of the Concepts,” in Encyclopedia of Bioethics, ed. Warren T. Reich (McMillan, 1995), 1057–85; Allan Young, “Health and Disease—Anthropological Perspectives,” in Encyclopedia of Bioethics, ed. Warren T. Reich (McMillan, 1995), 1097–101; Kenneth M. Boyd, “Disease, Illness, Sickness, Health, Healing and Wholeness: Exploring Some Elusive Concepts,” Medical Humanities 26, no. 1 (June 2000): 9–17, http://dx .doi.org/10.1136/mh.26.1.9; Hugo Tristram Engelhardt and Kevin William Wildes, “Health and Disease—Anthropological Perspectives,” in Encyclopedia of Bioethics, ed. Stephen G. Post (McMillan, 2004), 1075–81. 3.  Bjørn Hofmann, “Complexity of the Concept of Disease as Shown through Rival Theoretical Frameworks,” Theoretical Medicine and Bioethics 22 (June 2001): 211–36, https:// doi.org/10.1023/A:1011416302494; Bjørn Hofmann, “On the Triad Disease, Illness, and Sickness,” Journal of Medicine and Philosophy 27, no. 6 (December 2002): 651–73, https://doi .org/10.1076/jmep.27.6.651.13793; Bjørn Hofmann, “Disease, B ias in M edicine 

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Illness, and Sickness,” in The Routledge Companion to Philosophy of Medicine, eds. Miriam Solomon, Jeremy R. Simon, and Harold Kincaid (Routledge, 2016), https://www.rout ledgehandbooks.com/doi/10.4324/9781315720739.ch2. 4.  Parsons, “Social System”; Talcott Parsons, “Definitions of Health and Illness in the Light of American Values and Social Structure,” in Patients, Physicians and Illness: Sourcebook in Behavioral Science and Medicine, ed. E. Gartly Jaco (Free Press, 1958); Talcott Parsons, Social Structure and Personality (Free Press, 1964). 5.  Andrew C. Twaddle, Influence and Illness: Definitions and Definers of Illness Behavior among Older Males in Providence, Rhode Island. PhD dissertation (Brown University, 1968); Andrew C. Twaddle, “Disease, Illness and Sickness Revisited,” in Disease, Illness and Sickness: Three Central Concepts in the Theory of Health, eds. Andrew C. Twaddle and Lennart Nordenfelt (Linköping University Press, 1994), 1–18; Andrew C. Twaddle, “Disease, Illness, Sickness and Health: A Response to Nordenfelt,” in Disease, Illness and Sickness: Three Central Concepts in the Theory of Health, eds. Andrew C. Twaddle and Lennart Nordenfelt (Linköping University Press, 1994), 37–53. 6.  Hofmann, “Disease, Illness, and Sickness,” 18. 7.  Murphy, “Concepts of Disease and Health.” 8. Christopher Boorse, “On the Distinction between Disease and Illness,” Philosophy and Public Affairs 5, no. 1 (Autumn 1975): 49–68; Rachel Cooper, Classifying Madness (Springer, 2005); Peter Zachar and Kenneth S. Kendler, “The Removal of Pluto from the Class of Planets and Homosexuality from the Class of Psychiatric Disorders: A Comparison,” Philosophy, Ethics, and Humanities in Medicine 7, no. 4 (January 2012): 1–7. 9.  Allan V. Horwitz and Jerome C. Wakefield, The Loss of Sadness: How Psychiatry Transformed Normal Sorrow into Depressive Disorder (Oxford University Press, 2007). 10.  Andrew M. Pomerantz, “Diagnosis and Classification Issues: DSM-5 and More,” in Clinical Psychology: Science, Practice, and Culture: DSM-5 Update (Sage Publications, 2014), 151–81. 11.  Bjørn Hofmann and Fredrik Svenaeus, “How Medical Technologies Shape the Experience of Illness,” Life Sciences, Society and Policy 14, no. 1 (February 2018): 3, https:// doi.org/10.1186/s40504-018-0069-y; Bjørn Hofmann, “The Technological Invention of Disease,” in Encyclopedia of Creativity, Invention, Innovation and Entrepreneurship, ed. Elias G. Carayannis (Springer, 2013), 1786–96. 12. Bryan Jennett, “Medical Technology, Social and Health Care Issues,” in Principles of Health Care Ethics, ed. Raanan Gillon (John Wiley & Sons, 1994), 861–72. 13.  Allen Frances, “The New Crisis in Confidence in Psychiatric Diagnosis,” Annals of Internal Medicine 159, no. 3 (August 2013): 221–22, https://doi.org/10.7326/0003 -4819-159-3-201308060-00655. 14. Mayli Mertens, “Liminal Innovation Practices: Questioning Three Common Assumptions in Responsible 114 

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Innovation,” Journal of Responsible Innovation 5, no. 3 (July 2018): 280–98, https://doi.org/10.1080/23299460.2018.14 95031. 15.  Claudio Sandroni and Jerry P. Nolan, “Neuroprognostication after Cardiac Arrest in Europe: New Timings and Standards,” Resuscitation 90 (February 2015): A4–A5, https://doi.org/10.1016/j.resuscitation.2015.02.020. 16. Mayli Mertens, Responsible Prediction under Critical Uncertainty: An Epistemic Analysis of Neuroprognostic Innovation Practices after Cardiac Arrest (Enschede, Netherlands: University of Twente, 2021), 70; 174; 188–90, https://doi .org/10.3990/1.9789036552349. 17.  Michel J. A. M. van Putten, Sebastian Olbrich, and Martijn Arns, “Predicting Sex from Brain Rhythms with Deep Learning,” Scientific Reports 8 (February 2018): 3069, https://doi.org/10.1038/s41598-018-21495-7. 18.  van Putten et al., “Predicting Sex,” 1. 19.  Iran: Islamic Penal Code, November 20, 1991, National Legislative Bodies/National Authorities, accessed January 28, 2022, https://www.refworld.org/docid/518a19404.html. 20.  Javaid Rehman, “Situation of Human Rights in the Islamic Republic of Iran: Report of the Special Rapporteur on the Situation of Human Rights in the Islamic Republic of Iran, Javaid Rehman,” United Nations General Assembly, January 2021, https://documents-dds-ny.un.org/doc /UNDOC/GEN/G21/001/53/PDF/G2100153.pdf; Lucas Ramón Mendos, State-Sponsored Homophobia 2019 (Geneva: International Lesbian, Gay, Bisexual, Trans and Intersex Association, March 2019). 21. Aldous Leonard Huxley, Brave New World (Harper Collins, 1932, 1998): xiii. 22.  Philip Wesley Jackson, Life in Classrooms (Holt, Rinehart & Winston, 1968). 23.  Jane R. Martin, “What Should We Do with a Hidden Curriculum When We Find One?,” in The Hidden Curriculum and Moral Education, eds. Henry Giroux and David Purpel (McCutchan Publishing Corporation, 1983), 122–39. 24.  Association of American Medical Colleges, “Medical School Graduation Questionnaire: 2016, All Schools Summary Report,” 2016 www.aamc.org/download/464412 /data/2016gqallschoolssummaryreport.pdf. 25.  Lisa Soleymani Lehmann et al., “Hidden Curricula, Ethics, and Professionalism: Optimizing Clinical Learning Environments in Becoming and Being a Physician: A Position Paper of the American College of Physicians,” Annals of Internal Medicine 168, no. 7 (April 2018): 506–8, https:// doi.org/10.7326/m17-2058. 26.  Quinn Capers, David A. Bond, and Uday S. Nori, “Bias and Racism Teaching Rounds at an Academic Medical Center,” Chest 158, no. 6 (December 2020): 2688. https:// doi.org/10.1016/j.chest.2020.08.2073. 27. Elisabeth N. Chapman, Anna Kaatz, and Molly Carnes, “Physicians and Implicit Bias: How Doctors May Unwittingly Perpetuate Health Care Disparities,” Journal of General Internal Medicine 28, no. 11 (April 2013): 1504.

28.  Chapman et al., “Physicians and Implicit Bias,” 1508. 29. Chloë Fitzgerald and Samia Hurst, “Implicit Bias in Healthcare Professionals: A Systematic Review,” BMC Med Ethics 18, no. 19 (March 2017): 1–18, https://doi .org/10.1186/s12910-017-0179-8. 30.  Chapman et al., “Physicians and Implicit Bias.” 31. Mae Thamer et al., for the CHOICE study, “U.S. Nephrologists’ Attitudes towards Renal Transplantation: Results from a National Survey,” Transplantation 71, no. 2 (January 2001): 281–88; John Z. Ayanian et al., “The Effect of Patients’ Preferences on Racial Differences in Access to Renal Transplantation,” New England Journal of Medicine 341 (November 1999): 1661–69. 32.  Edward L. Hannan et al., “Access to Coronary Artery Bypass Surgery by Race/Ethnicity and Gender among Patients Who Are Appropriate for Surgery,” Medical Care 37, no. 1 (January 1999): 68–77. 33. Michelle van Ryn and Steven S. Fu, “Paved with Good Intentions: Do Public Health and Human Service Providers Contribute to Racial/Ethnic Disparities in Health?” American Journal of Public Health 93, no. 2 (February 2003): 248–55, https://doi.org/10.2105/ajph.93.2.248. 34.  Knox H. Todd et al., “Ethnicity and Analgesic Practice,” Annals of Emergency Medicine 35, no. 1 (January 2000): 11–16, https://doi.org/10.1016/s0196-0644(00)70099-0; Knox H. Todd, Nigel Samaroo, and Jerome R. Hoffman, “Ethnicity as a Risk Factor for Inadequate Emergency Department Analgesia,” Journal of the American Medical Association 269, no. 12 (March 1993): 1537–39, https://doi .org/10.1001/jama.1993.03500120075029. 35. Aida Won et al., “Correlates and Management of Nonmalignant Pain in the Nursing Home,” Journal of the American Geriatric Society 47, no. 8 (August 1999): 936–42, https://doi.org/10.1111/j.1532-5415.1999.tb01287.x. 36.  Karen O. Anderson et al., “Minority Cancer Patients and Their Providers,” Cancer 88, no. 8 (April 2000): 1929– 38, https://doi.org/10.1002/(sici)1097-0142(20000415)88:8 3.0.co;2-2; Charles S. Cleeland et al., “Pain and Treatment of Pain in Minority Patients with Cancer: The Eastern Cooperative Oncology Group Minority Outpatient Pain Study,” Annals of Internal Medicine 127, no. 9 (November 1997), 813, https://doi.org/10.7326/0003 -4819-127-9-199711010-00006. 37. Paul D. Bell and Suzanne Hudson, “Equity in the Diagnosis of Chest Pain: Race and Gender,” American Journal of Health Behavior 25, no. 1 (January–February 2001): 60–71, https://doi.org/10.5993/ajhb.25.1.7. 38.  van Ryn and Fu, “Paved with Good Intentions,” 249. 39.  Alexander S. Young et al., “The Quality of Care for Depressive and Anxiety Disorders in the United States,” Archives of General Psychiatry 58, no. 1 (January 2001): 55–61, https://doi.org/10.1001/archpsyc.58.1.55; Philip S. Wang, Patricia Berglund, and Ronald C. Kessler, “Recent Care of Common Mental Disorders in the United States,” Journal

of General Internal Medicine 15, no.5 (May 2000): 284–92, https://doi.org/10.1046/j.1525-1497.2000.9908044.x. 40.  Eric C. Schneider, Alan M. Zaslavsky, and Arnold M. Epstein, “Racial Disparities in the Quality of Care for Enrollees in Medicare Managed Care,” Journal of the American Medical Association 287, no. 10 (March 2002): 1288–94, https://doi.org/10.1001/jama.287.10.1288. 41.  Melissa P. Delbello et al., “Effects of Race on Psychiatric Diagnosis of Hospitalized Adolescents: A Retrospective Chart Review,” Journal of Child and Adolescent Psychopharmacology 11, no. 1 (2001): 95–103, doi: 10.1089/104454601750143528; Lisa Dixon et al., “Variables Associated with Disparities in Treatment of Patients with Schizophrenia and Comorbid Mood and Anxiety Disorders,” Psychiatric Services 52, no. 9 (September 2001): 1216– 22, doi:10.1176/appi.ps.52.9.1216; Helen C. Kales et al., “Race, Psychiatric Diagnosis, and Mental Health Care Utilization in Older Patients,” The American Journal of Geriatric Psychiatry 8, no. 4 (Fall 2000): 301–9, https://doi.org/10.1176 /appi.ajgp.8.4.301; Helen C. Kales et al., “Race and Inpatient Psychiatric Diagnoses among Elderly Veterans,” Psychiatric Services 51, no. 6 (June 2000): 795–800, https://doi .org/10.1176/appi.ps.51.6.795; Arthur L. Whaley, “Racism in the Provision of Mental Health Services: A Social-Cognitive Analysis,” American Journal of Orthopsychiatry 68, no. 1 (January 1998): 47–57, doi:10.1037/h0080269; Kermit Crawford, William H. Fisher, and Melissa McDermeit, “Racial/ Ethnic Disparities in Admissions to Public and Private Psychiatric Inpatient Settings: The Effect of Managed Care,” Administration and Policy in Mental Health 26, no. 2 (November 1998): 101–9, doi:10.1023/a:1021246226482; Noriyoshi Takei et al., “First Episodes of Psychosis in Afro-Caribbean and White People: An 18-Year Follow-up Population-Based Study,” British Journal of Psychiatry 172, no. 2 (February 1998): 147–53; doi:10.1192/bjp.172.2.147; Sara Davies et al., “Ethnic Differences in Risk of Compulsory Psychiatric Admission among Representative Cases of Psychosis in London,” BMJ 312 (March 1996): 533–37, https://doi.org/10.1136 /bmj.312.7030.533; Steven P. Cuffe et al., “Race and Gender Differences in the Treatment of Psychiatric Disorders in Young Adolescents,” Journal of the American Academy of Child & Adolescent Psychiatry 34, no. 11 (November 1995): 1536–43, https://doi.org/10.1097/00004583-199511000-00021; Mark D. Kilgus, Andres J. Pumariega, and Steven P. Cuffe, “Influence of Race on Diagnosis in Adolescent Psychiatric Inpatients,” Journal of the American Academy of Child & Adolescent Psychiatry 34, no. 1 (1995): 67–72, doi:10.1097/00004583 -199501000-00016; Stephen M. Strakowski, Richard Shelton, and Meredith L. Kolbrener, “The Effects of Race and Comorbidity on Clinical Diagnosis in Patients with Psychosis,” The Journal of Clinical Psychiatry 54, no. 3 (March 1993): 96–102; Stephen M. Strakowski et al., “The Effects of Race on Diagnosis and Disposition from a Psychiatric Emergency Service,” The Journal of Clinical Psychiatry 56, no. 3 (March

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1995): 101–7; Stephen M. Strakowski et al., “The Effects of Race and Information Variance on Disagreement between Psychiatric Emergency Service and Research Diagnoses in First-Episode Psychosis,” The Journal of Clinical Psychiatry 58, no. 10 (October 1997): 457–63, https://doi.org/10.4088 /jcp.v58n1010a. 42.  van Ryn and Fu, “Paved with Good Intentions,” 249. 43.  Sharon K. Hull and Karen Broquet, “How to Manage Difficult Patient Encounters,” Family Practice Management 14, no. 6 (June 2007): 30–34; James Adams and Robert Murray, “The General Approach to the Difficult Patient,” Emergency Medicine Clinics of North America, 16, no. 4(1998): 689–700, doi:10.1016/s0733-8627(05)70028-6. 44.  Jeffrey L. Jackson and Kurt Kroenke, “Difficult Patient Encounters in the Ambulatory Clinic: Clinical Predictors and Outcomes,” Archives of Internal Medicine 159, no. 10 (May 1999): 1069–75, https://doi.org/10.1001 /archinte.159.10.1069. 45.  Jeremy R. Simon, James Dwyer, and Lewis R. Goldfrank, “The Difficult Patient,” Emergency Medicine Clinics of North America 17, no. 2 (May 1999): 353–70, https://doi .org/10.1016/s0733-8627(05)70064-x. 46.  Anonymous, “Vous avez déjà assez couté à la communauté française,” interview by Mayli Mertens, data protected repository, University of Twente, December 2021. 47. Daniel Kahneman, Thinking, Fast and Slow (Farrar, Straus and Giroux, 2011). 48.  Keith E. Stanovich and Richard F. West, “Individual Differences in Reasoning: Implications for the Rationality Debate,” Behavioral and Brain Sciences 23, no. 5 (2000): 645– 65, https://doi.org/10.1017/S0140525X00003435. 49. Khaneman, Thinking Fast and Slow; Stanovich and West, “Individual Differences in Reasoning.” 50. Mertens, Responsible Prediction under Critical Uncertainty, 65, 83. 51.  Christopher D. Buckingham and Ann Adams, “Classifying Clinical Decision Making: Interpreting Nursing Intuition, Heuristics and Medical Diagnosis,” Journal of Advanced Nursing 32, no. 4 (April 2000): 990–98. 52.  Julian N. Marewski and Gerd Gigerenzer, “Heuristic Decision Making in Medicine,” Dialogues in Clinical Neuroscience 14, no. 1 (March 2012): 77–89, https://doi .org/10.31887/dcns.2012.14.1/jmarewski. 53.  Gustavo Saposnik et al., “Cognitive Biases Associated with Medical Decisions: A Systematic Review,” BMC Medical Informatics and Decision Making 16, no. 138 (November 2016): 1–14, https://doi.org/10.1186/s12911 -016-0377-1. 54.  Pat Croskerry, “The Importance of Cognitive Errors in Diagnosis and Strategies to Minimize Them,” Academic Medicine 78, no. 8 (August 2003): 775–80. https://doi .org/10.1097/00001888-200308000-00003. 55.  Saposnik et al., “Cognitive Biases,” 1. 56.  Lori Bruce, “A Pot Ignored Boils On: Sustained Calls for Explicit Consent of Intimate Medical Exams,” HEC 116 

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Forum 32, no. 2 (June 2020): 125–45, doi:10.1007/s10730 -020-09399-4. 57. Peter A. Ubel, Christopher Jepson, and Ari Silver-Isenstadt, “Don’t Ask, Don’t Tell: A Change in Medical Student Attitudes after Obstetrics/Gynecology Clerkships toward Seeking Consent for Pelvic Examinations on an Anesthetized Patient,” American Journal of Obstetrics and Gynecology 188, no. 2 (February 2003): 575–79, https://doi .org/10.1067/mob.2003.85. 58.  Avram Goldstein, “Practice vs. Privacy on Pelvic Exams,” The Washington Post, May 10, 2003, https://www .washingtonpost.com/archive/politics/2003/05/10/prac tice-vs-privacy-on-pelvic-exams/4e9185c4-4b4c-4d6a -a132-b21b8471da58/. 59.  Chris Feudtner, Dimitri A. Christakis, and Nicholas A. Christakis, “Do Clinical Clerks Suffer Ethical Erosion? Students’ Perceptions of Their Ethical Environment and Personal Development,” Academic Medicine: Journal of the Association of American Medical Colleges 69, no. 8 (August 1994): 670–79, doi: 10.1097/00001888-199408000-00017. 60. Alauddin Bhuiyan et al., “Automated Diabetic Retinopathy Screening for Primary Care Settings Using Deep Learning,” Intelligence-Based Medicine 5 (November 2021): 100045, https://doi.org/10.1016/j.ibmed.2021.100045. 61.  Harini Suresh and John Guttag, “A Framework for Understanding Sources of Harm throughout the Machine Learning Life Cycle,” in Equity and Access in Algorithms, Mechanisms, and Optimization (EAAMO, 2021), https://doi .org/10.1145/3465416.3483305. 62.  Solon Barocas et al., “The Problem with Bias: From Allocative to Representational Harms in Machine Learning,” Special Interest Group for Computing, Information and Society (SIGCIS) (2017). 63. Batya Friedman and Helen Nissenbaum, “Bias in Computer Systems,” ACM Transactions on Information Systems 14, no. 3 (July 1996): 330–47, https://doi.org /10.1145/230538.230561. 64.  Friedman and Nissenbaum, “Bias in Computer Systems,” 330. 65.  Suresh and Guttag, “A Framework,” 5. 66. Kristian Lum and William Isaac, “To Predict and Serve? Significance 13, no. 5 (October 2016): 16, doi:10.1111 /j.1740-9713.2016.00960.x; Danielle Ensign et al., “Runaway Feedback Loops in Predictive Policing,” Proceedings of Machine Learning Research 81, (2018): 1–12; Cathy O’Neil, Weapons of Math Destruction: How Big Data Increases Inequality and Threatens Democracy (Broadway Books, 2016), 7, 53, 87, 166–67; Suresh and Guttag, “A Framework,” 5. 67.  Darshali A. Vyas, Leo G. Eisenstein, and David S. Jones, “Hidden in Plain Sight—Reconsidering the Use of Race Correction in Clinical Algorithms,” New England Journal of Medicine 383 (June 2020): 874–82, doi:10.1056 /nejmms2004740. 68.  Darshali A. Vyas et al., “Challenging the Use of Race in the Vaginal Birth after Cesarean Section Calculator,”

Women’s Health Issues 29, no. 3 (2019): 201–4, doi:10.1016/j .whi.2019.04.007; William A. Grobman et al., “Prediction of Vaginal Birth after Cesarean Delivery in Term Gestations: A Calculator without Race and Ethnicity,” American Journal of Obstetrics and Gynecology 225, no. 664 (2021): e1–7, doi:10.1016/j.ajog.2021.05.021. 69.  Konstantin Genin and Thomas Grote, “Randomized Controlled Trials in Medical AI: A Methodological Critique,” Philosophy of Medicine 2, no. 1 (May 2021): 1–15, https://doi.org/10.5195/philmed.2021.27. 70.  Lisa N. Guo et al., “Bias in, Bias out: Underreporting and Underrepresentation of Diverse Skin Types in Machine Learning Research for Skin Cancer Detection—A Scoping Review,” Journal of the American Academy of Dermatology (July 2021), https://doi.org/10.1016/j.jaad.2021.06.884. 71. Amit Kaushal, Russ Altman, and Curt Langlotz, “Geographic Distribution of US Cohorts Used to Train Deep Learning Algorithms,” Journal of the American Medical Association 324, no. 12 (September 2020): 1212–13, https:// doi.org/10.1001/jama.2020.12067. 72.  Kaushal et al., ”Geographic Distribution,” 1213. 73. Eric J. Topol, “High-Performance Medicine: The Convergence of Human and Artificial Intelligence,” Nature Medicine 25 (January 2019): 44–56, https://doi.org/10.1038 /s41591-018-0300-7. 74.  Topol, “High-Performance Medicine,” 51. 75.  Topol, “High-Performance Medicine,” 51. 76.  Mayli Mertens et al., “Can We Learn from Hidden Mistakes? Self-Fulfilling Prophecy and Responsible Neuroprognostic Innovation,” Journal of Medical Ethics (July 2021): 1–7, https://doi.org/10.1136/medethics-2020-106636. 77. Mayli Mertens, “When Hidden Mistakes Impede Learning . . . Taking Practical and Epistemic Responsibility for Self-Fulfilling Prophecies,” in Responsible Prediction

under Critical Uncertainty (Enschede, Netherlands: University of Twente, 2021), 130–50. 78.  Mertens et al., “Can We Learn,” 3–5; Mertens, Responsible Prediction under Critical Uncertainty, 179. 79.  Owen King and Mayli Mertens, “Self-Fulfilling Prophecy in Practical and Automated Prediction” (under review); Mertens, Responsible Prediction under Critical Uncertainty, 186, 189. 80. Jonathan Birch et al., “Clinical Decisions Using AI Must Consider Patient Values,” Nature Medicine, online first (January 2022), https://doi.org/10.1038/s41591-021 -01624-y. 81.  Birch et al., “Clinical Decisions Using AI,” 3. 82. For a general analysis of the ethical and epistemic permissibility of profiling in medical contexts, see: Winnie Ma, “Profiling Patients,” in The Routledge Handbook of Philosophy of Public Health, eds. Sridhar Venkatapuram and Alex Broadbent (Taylor & Francis, forthcoming). 83.  Mertens, “Responsible Prediction under Critical Uncertainty, 65, 83. 84. Mertens, Responsible Prediction under Critical Uncertainty, 169–78. 85.  Robert F. Service, “‘The Game Has Changed’: AI Triumphs at Protein Folding,” Science 370, no. 6521 (December 2020): 1144–45, https://doi.org/10.1126/science.370.6521. 86. Rob Toews, “AlphaFold Is the Most Important Achievement in AI—Ever,” Forbes, October 3, 2021, https:// www.forbes.com/sites/robtoews/2021/10/03/alphafold -is-the-most-important-achievement-in-ai-ever/. 87.  Rob Toews, “AlphaFold.” 88.  Jordan J. Wadden, “Defining the Undefinable: The Black Box Problem in Healthcare Artificial Intelligence,” Journal of Medical Ethics, online first (July 2021), https://doi .org/10.1136/medethics-2021-107529.

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CHAPTER 11

Race and Gender in Research Christopher ChoGlueck and Elisabeth A. Lloyd

B

ecause science is a social practice conducted by human beings who are embedded in cultures, scientific research itself is saturated with the ethical values, social norms, and political stakes of society.1 This chapter explores two of the most studied and most damaging aspects of such societal influence on science: racial and gender biases. Science has been riddled with bias, abuse, and complicity when it comes to its mistreatment of people of color and women—not to mention poor people, disabled people, queer and trans* people, Indigenous peoples, and other marginalized and minoritized groups—so much so that some have even questioned whether it is possible for science to abandon its historical links with hegemonic ideologies and systems of oppression.2 This chapter discusses two major domains of biological and medical research involving race and gender: cognitive differences research and reproductive health science. In each case, we explore the influence of sexist values like androcentric bias—where researchers focus on men and male bodies as the alleged “norm”—and racist values like white supremacy—where researchers privilege the cultures and attributes of white people as allegedly “superior” to those of people of color. Drawing on the insights of Black feminists, we analyze the ways in which biases involving race and gender intersect within the context of research.3 Our discussion aims to show how these social hierarchies 118

can privilege and marginalize groups within the interlocking matrix of power and oppression, highlighting the complex interaction of these biases inside research communities.4 The solution to these problems of pervasive bias, we maintain, is not “value-free” science, which would suffer from many of the same problems of antiracial “color-blind” ideology, such as false claims to neutrality and universality and the inability to articulate antiracist (and antisexist) practices.5 Instead, we suggest that while some biases can corrupt science (such as sexist and racist values), not all influences of societal values are necessarily negative: At times, influences of ethical values and social norms on research can actually improve science, particularly when a scientific community lacks the diversity to identify its own societal embeddedness and partial perspective.6 To better demonstrate how scientific objectivity depends on the diversity of its practitioners, we discuss the cultural and structural sources of hegemonic bias in homogeneous research communities, as well as promising developments toward equity in research practices.

BIASED RESEARCH QUESTIONS A B O U T “CO G N I T I V E DI FFE R E N C E S” All too often in scientific inquiry, researchers have studied human diversity in terms of hierarchies of

difference. Under the veneer of scientific objectivity, this approach has normalized prejudices and naturalized social inequalities. For instance, over a century ago, when social scientists were engaged with studying “the Negro problem,” sociologist and philosopher W. E. B. Du Bois challenged this dominant framing for perpetuating racist stereotypes and for wrongly problematizing formerly enslaved peoples and their descendants for their own subordinate social status. Instead, Du Bois posited that “the problem of the Twentieth Century is the problem of the color-line” itself, and he sought to reorient sociology to more critically investigate how Black people had come to be conceptualized as “a problem” in the first place.7 This section explores how the framing of research questions can be biased by examining the history of alleged “cognitive differences” research. More specifically, the “science” of intelligence has often reified hierarchies of difference by gender, race, ability, and so on. Western thinkers have long considered women a less perfect version of men for their “deficiency” in reason, morality, and self-control.8 In the mid-nineteenth century, Charles Darwin used the alleged cognitive inferiority of women to explain female passivity relative to male virility: “Man is more courageous‚ pugnacious and energetic than woman‚ and has more inventive genius,” and “Woman seems to differ from man in mental disposition‚ chiefly in her greater tenderness and less selfishness.”9 Darwin was not alone in considering women inherently less intelligent than men, often because of assumptions about women’s reproductive nature— despite criticisms of his androcentrism from contemporaries like Eliza Burt Gamble.10 Regarding racial differences, Darwin was a committed abolitionist of slavery, and he believed that his theory of evolution demonstrated how different human populations descended from an ancient common ancestor, against the popular idea at the time of separate divine creations resulting in different human races.11 Nevertheless, Darwin was often disparaging in his discussions of Black, Indigenous, and other people of color, and later evolutionary theorists like Darwin’s cousin Francis Galton (the founder of eugenics) advanced the theory that intelligence was a

heritable trait, which was subject to natural selection and differed significantly between genetic races.12 In concert, scientists in the infamous field of craniometry used skull measurements to argue that non-Europeans were intellectually disadvantaged, despite serious methodological flaws including biased measurement and biased interpretation that were later pointed out by biologist Stephen J. Gould and corroborated by others.13 These craniometrists had interpreted the data to support existing unjust racial hierarchies (and human slavery) in methodologically flawed ways, despite the fact that cranial capacity is a poor measure of population-level intelligence.14 While much of the study of brain differences has focused on race, scientists also studied gender/ sex differences and often likened the “inferiority” of women with that of people of color.15 There were critics of the studies claiming to show the cognitive inferiority of women, like statistician Alice Lee who compellingly demonstrated how those authors ignored the variation in cranial capacity among the anatomists who were men and how this variation overlapped with their women students. However, Lee herself maintained that people of European descent were still more evolutionarily advanced than people from Asia and Africa: after she concludes, “There is no marked correlation between skull capacity and intellectual power in the case of either sex,” Lee nonetheless states that “the complexity of the convolutions of the brain, and the variety and efficiency of its commissures, rather than its actual size, are the characters we expect to differentiate race from race and sex from sex, and to have developed man’s civilisation.”16 This exemplifies what sociologist Patricia Hill Collins calls the matrix of domination, in which different axes of oppression interconnect, and these intersecting hierarchies of race and gender put women of color in double jeopardy.17 The colonial context of ongoing Western imperialism in Africa afforded European men of science (like naturalist George Cuvier) access to racialized and gendered biological materials (like brains, genitals, and bones of deceased Africans) from the bodies of trafficked women (like Sara Baartman) who had been objectified and commodified (as the “Hottentot Venus”) Race and Gende r in Resea r ch 

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and displayed postmortem in colonial museums (for nearly two centuries in France, only to be repatriated to South Africa in 2002).18 While much cognitive research over the past several decades has sought to understand gender/sex differences through brain structure, studies on the corpus callosum suggest that ideas of “female-typical” and “male-typical” brains are misleading because they are based on negligible differences, which has been suggested to result from relative differences in brain volume.19 The key problem with such studies, as developmental biologist Anne Fausto-Sterling points out, is less about the data themselves and more about how findings of difference are interpreted to undermine equality.20 Accordingly, philosophers like Janet Kourany have argued that we ought to deprioritize cognitive differences research because it will confirm existing stereotypes and reinforce the unfair inequality of opportunities for women and people of color.21 To understand why this research is biased toward inequality, consider Elisabeth Lloyd’s Logic of Research Questions analysis:22 the primary research question of such inquiry is: “What brain structures explain the existing differences in cognitive capacities between men and women, white people and people of color, etc.”? Any responsive answers to this research question must include the following claims: “The existing differences in cognitive capacities between X and Y are explained by brain structure or functional difference Z.” A possible and responsive answer cannot begin: “There are no such cognitive differences between X and Y, which are therefore not explained by brain structure or function Z.” Instead, the question’s framing assumes group differences and is merely looking for answers from structures to make inferences to functional differences; therefore, this proposed research question sharply limits the possible answers of such research into the neurological or structural basis of cognitive possibilities involving human beings from different groups by gender, race, and so on. Furthermore, the framing of the research question adversely affects the collection of evidence for its answer, such that the proposed research question guides researchers to collect and label data in terms of groups that are assumed separate from the 120 

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outset. The search for differences nearly ensures the finding of differences, whereas a more open question would not, such as “What brain structures explain the variety and diversity of cognitive capacities across the human species”? By looking for variety and diversity rather than differences, this new question is less committed to difference, less hierarchical about any found differences, and thus less biased toward reinforcing hierarchies. In contrast to Kourany’s suggestion to deprioritize the search for cognitive differences, others like neuroscientist Deboleena Roy have a somewhat different perspective: Roy maintains that scientists should remain open to finding cognitive differences and not assume that moral equality entails physiological sameness.23 Rather than replicating the old, hackneyed hierarchies of difference, Roy contends neuroscientists ought to study diversity in a more positive light, seeking more nuanced and dynamic concepts of difference, such as through developmental systems theory and neuroplasticity and without determinist and essentialist ideas about gender/sex and race.24 Whatever solution one accepts for these design problems in studying cognitive differences, one thing is clear: neuroscientists must remain critical and vigilant to identify the influence of values on their research questions and to avoid problematic framings and limiting assumptions.25

BIASED SELECTION AND M I S T R E ATM E N T O F S U B J E C TS I N R E P R O DU C T I V E R E S E A R C H Another major domain of pervasive abuse, bias, and injustice in research is reproductive health and medicine. When the famed tennis star Serena Williams nearly died after her first pregnancy in 2018, it was not just an isolated affair but part of the maternal mortality crisis in the United States: Black women face two to three times the risk of dying from pregnancy; furthermore, Black, Indigenous, Latina, and Asian/ Pacific Islander women are all more likely than white women to become seriously ill during pregnancy.26 Not only has the medical establishment long ignored

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the needs of Black and Indigenous women of color, but doctors and hospitals have actively sought to reduce the number of children born to these groups, as well as to poor women and disabled people, as attested to by the legacies of forced sterilization of the allegedly “unfit” throughout the twentieth century.27 This section turns to biomedical research to discuss the larger context of abuse of research subjects from marginalized groups and the implications for scientific knowledge specifically in the domain of reproductive research. Here, injustice has arisen from both the exclusion of marginalized groups from research as well as unfair forms of inclusion; therefore, any attempts to diversify the subjects of biomedical research and make recruitment more inclusive will need to be grounded in equity. Reproduction has long been a major axis for social hierarchies, at least in the West, where the sexual division of labor under patriarchy continues to devalue domestic labor and marginalize women.28 Patriarchy in the United States and Europe is rooted in the institution of the nuclear family, so gender-based oppression is not necessarily universal across cultures; nevertheless, Western imperialism imposed its hierarchies of gender throughout Africa, Asia, and the Americas.29 As stated earlier, modern biology and anatomy have been androcentrically biased based on false beliefs that women are biologically inferior to men, which has resulted in systematic ignorance about women and female bodies.30 In contrast, reproductive medicine has focused almost exclusively on cisgender women and female reproductive systems until recently.31 Gynecology (“the science of women”) was initially shaped by the Victorian idea that women’s nature was essentially reproductive.32 While gynecology has since flourished, the attempt to create a parallel field of andrology (“the science of men”) languished, reinforcing the dissociation of men with reproduction.33 Particularly in the U.S. context, many gynecological advancements were made brutally through the suffering of enslaved people. Dr. Marion Sims, the so-called father of American gynecology, developed the first surgery for vaginal fistula (an abnormal opening between the bladder and vagina) on enslaved

Black women. This plantation doctor intended the surgery to benefit white women, but they were lessthan-willing subjects, as recounted by historian Harriet Washington: “Slaves did not have to be recruited, persuaded, and cajoled to endure pain and indignity; they could not refuse.”34 Furthermore, Sims did not believe Black people felt pain in the same way as white people, so he refused to provide anesthesia to his research subjects—despite the standards of the time and the obvious displays of suffering from Betsy, Anarcha, Lucy, and the other unnamed enslaved women. Today, the statues of Sims as the “father of modern gynecology” continue to attract protest from racial justice activists who call for the removal of these monuments or for the addition of more historical context to memorialize the non-consensual nature of the experiments and to acknowledge the contributions of the mothers of modern gynecology.35 The root problem with such biased selection and blatant mistreatment of human subjects is not merely that researchers held these false beliefs about racial and gender hierarchies; it is that these researchers are enabled and empowered by unfair social structures like the legal institution of slavery and subsequent Jim Crow segregation. Beginning in the 1930s, the U.S. Public Health Service (PHS) supported a variety of research programs on sexually transmitted diseases, in large part because of increased syphilis among soldiers. One well-known result is the notorious “Study of Untreated Syphilis in the Male Negro” in Tuskegee, Alabama, conducted between 1932 and 1972 to understand the progression of syphilis in the late stages if left untreated, as well as possible racial differences.36 The latter goal was based on the false stereotype that Black men were “sexual deviants,” and researchers recruited poor Black sharecroppers, misleadingly told them their diagnostic spinal taps were “special treatment,” and failed to provide them penicillin even after it became the standard of treatment in the 1940s and 1950s. During the same time, U.S. imperialism in Central America enabled an ease of access for researchers to exploit vulnerable, marginalized, institutionalized populations outside their own borders. A less well-known PHS-supported trial was conducted Race and Gende r in Resea r ch 

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in Guatemala during the late 1940s by the Venereal Disease Research Laboratory and the Pan-American Health Organization. Unlike the concurrent trials in Alabama, researchers in Guatemala were actually testing whether penicillin worked as both a treatment and a prophylaxis for diseases like syphilis; to do so, they intentionally infected over 2,000 participants, including Guatemalan sex workers, soldiers, incarcerated people, people in mental asylums, and children. Researchers at U.S. PHS chose Guatemala because sex work was legal there, even in prisons. Similar to the trials in Alabama, the white American researchers justified their choice of subjects based on false racist assumptions that “syphilis is more frequent in Latins than in Indians and that, when manifested in an Indian, it appears in mild form,” referring derogatorily to the Indigenous descendants of Mayans.37 These examples of biased selection of subjects illustrate broader patterns of neglect and abuse of people of color, women, and other marginalized groups, what Washington fittingly calls “Medical Apartheid.”38 Media coverage was first to disclose the abuses in PHS trials in Tuskegee and elsewhere in the early 1970s, resulting in the current federal guidelines for research ethics codified in the Belmont Report, such as the right to informed consent and fair selection of subjects.39 These protections for human subjects were bolstered by the legacy of dangerous prescription drugs in the early 1960s, after which the U.S. Food and Drug Administration (FDA) began to exclude “women of childbearing potential” from early clinical trials.40 Such rules were rooted in gendered concerns about women’s reproductive systems “to avoid any and all risks to a potential fetus,” and they resulted unintentionally in the underrepresentation of women in drug trials and other medical research in the 1980s.41 Consider the infamous Multiple Risk Factor Intervention Trial (“Mr. Fit”) on coronary heart disease, involving 12,866 men and 0 women.42 In another example, AIDS activists famously and publicly protested the FDA and National Institutes of Health (NIH) for the underrepresentation of women and people of color in the trials of AIDS treatments.43 Researchers later found that many of the results about male anatomy do not apply 122 

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to female anatomy; furthermore, the women’s health movement criticized this androcentrism, not simply as “politicized science” but rather as dependent on questionable background assumptions that undermined both scientific accuracy and gender equality.44 While earlier cases like the PHS trials in Tuskegee and Guatemala illustrate the oppressive potential of difference-based reasoning when based on hierarchies, these newer cases demonstrated the pitfalls of hasty generalizations from limited samples and the need for more inclusive and diverse samples.45 Based on advocacy for the women’s health movement and AIDS activists, the FDA removed its exclusions for “women of childbearing potential” in 1993 and began encouraging pharmaceutical companies to have inclusive samples and to conduct subpopulation analyses to find differences.46 This was followed by the NIH Revitalization Act of 1993, which requires federal grant recipients to recruit samples representative of the U.S. population, unless justified otherwise, and to conduct analyses of difference by sex/gender and race/ethnicity.47 Based on the principles of diversity and inclusion, as well as protections for research subjects, we hope that medical research will be more accountable to marginalized communities involved in research. Yet, without a commitment of the medical community to equity and a disavowal of double standards by race and gender, researchers are likely to continue reinforcing unfair social hierarchies.48 These historical cases exemplify how unfair selection of subjects can embody practices of exclusion or inclusion and subsequent mistreatment. Thus, researchers must exercise deliberation and reflection as well as openness to external criticism, in order to reduce the harms done to human subjects and transform science from a culture of complicity, to one of accountability and justice.

C U LT U R A L A N D S T RU C T U R A L SOURCES OF BIAS IN RESEARCH We have discussed how the framing of research questions (such as “cognitive differences”) and the selection of research subjects (without diversity and

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inclusion) can be biased and perpetuate inequality. But what is the source of such biases? This is an open question with shifting answers, particularly in the face of societal change and pressure to advance more equity and justice. Change in authority, power, leadership, and representation at higher ranks both academically and professionally has been remarkably slow over those decades, and this has had impacts on their treatment of marginalized and minoritized groups. Due to social and cultural obstacles to management and leadership roles, women and people of color are significantly underrepresented in STEM disciplines. For instance, only 30 percent of the world’s researchers are women, and a mere 11 percent of the U.S. practicing engineers are women.49 Black and Hispanic/Latinx women are 15 percent of the U.S. population but only 4 percent of workers in science and engineering occupations.50 While Black men are 13 percent of the U.S. population, they compromise only 3 percent of practicing physicians and 7 percent of medical students (and the latter figure is decreasing).51 The overrepresentation of white people and cisgender men in STEM is an ethical problem in itself, as it sustains unequal opportunities and unmerited privileges. Furthermore, this hegemony harms the epistemic quality and objectivity of science because homogenous communities of scientists often share the same problematic background assumptions, which can undermine the quality of evidence for a given theory, hypothesis, or practice, and such homogenous groups are unaware of their own biases, and thus unable to correct for them.52 The presence of deeply built-in, institutionalized bias reveals the core of this situation, concentrating power and authority in the hands of a few privileged white men. Or, put another way, biases against the visibility and recognition of female, gender-diverse, racially diverse promise and accomplishment are built into our educational, governmental, legal, and social institutions so deeply that it is foundational and thus hard to eject—despite the manifold scientific achievements of women and people of color, as well as the successes of historically Black colleges and women’s colleges.53 This invisibility of competence and erasure of merit are the results of a variety

of biased methods of evaluation and thus promotion, including androcentric, Eurocentric, and anti-Black ways of doing research, which intersect with overlapping biases of class, ability, sexual orientation, and so on, thereby compounding the distortions of research practices and knowledge.54 Recent research in social sciences has highlighted some of how such biases work in practice. Take laboratory sciences, which are relatively flush with younger women interested in pursuing the science, but they thin out at the upper ranks. Is it because women and people of color are just not good in advanced biology, genetics, biochemistry, or chemistry? On the contrary, there is substantial evidence of subtle and pervasive evaluation bias among science faculty (including men and women) in their judgment of student applications for laboratory positions, based on a 2012 study utilizing feedback on the same CV with a randomly assigned masculine or feminine name.55 Professors examined the qualifications of the students and decided whether to recommend hiring them, what salary to give them, whether to mentor them, and how much to do so. The very striking results found that both men and women scientists hired more men, gave them higher salaries, and offered more mentoring to them, even though the applications were identical except for the gendering of the name. Their justification? Applicants with feminine names were perceived as less “competent” by all professors (men and women), even though the applications were otherwise identical. We are reminded of Supreme Court Justice Ruth Bader Ginsburg’s insightful and fitting proposal: “I ask no favor for my sex; all I ask of our brethren is that they take their feet off our necks.”56 We also see societal assumptions at work in the case of the abysmally slow gains in diversifying senior faculty, in STEM fields as well as philosophy. What causes that? Is it a lack of interest? The answer seems to be most often given or implied that they don’t have the talent, capability, and “brilliance” to be top researchers. One philosopher conceived of an excellent experiment to investigate the causes and corollaries of this perceived gap between genders and between races in the profession: Sarah Jane Leslie and her collaborators documented the deficit in Race and Gende r in Resea r ch 

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the perceived “raw intellectual talent” or “brilliance” of women and people of color—traits that are widely believed to be necessary for professional success in many STEM disciplines, especially math, physics, engineering, and computer science.57 Leslie and her colleagues discovered pervasive cultural associations linking men and white people but not women and Black people with what they term “field-specific ability beliefs,” which can account for demographic gaps by race and gender not only in STEM fields but also in the social sciences and humanities, in which white men are overrepresented. The basic idea is that practitioners of different disciplines vary in the extent to which they believe that their discipline requires some innate, inborn, fixed talents or gifts. Those coming from disciplines that emphasize raw aptitude or brilliance may doubt that women and people of color possess this sort of aptitude for success in their field, and therefore may show biases against them. Leslie and colleagues surveyed academics from thirty disciplines across multiple institutions concerning such field-specific ability beliefs and compared these reasons against competing hypotheses for the lack of women and people of color in the relevant fields, such as the requirements for long hours, very high aptitudes, or the extent to which a field requires either systematizing or empathizing—all of which involve gendered and racialized assumptions.58 Leslie et al. found that field-specific ability beliefs were able to predict the representation of women and African Americans specifically across all thirty fields of academia that they tested. For instance, as they had predicted, the more a field valued giftedness or brilliance, the fewer the women PhD’s. (Philosophy is located at the most extreme end of belief in the requirement of brilliance for success in the field!) Leslie et al. found similar correlations between field-specific ability beliefs and the percentage of PhD’s who were African American. Moreover, “the extent to which practitioners of a discipline believe that success depends on sheer brilliance is a strong predictor of women’s and African American’s representation in that discipline.” But how does such bias work? Could it be a natural result that certain groups are less gifted at abstract 124 

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work like math, physics, computer science, and philosophy? No. Available evidence goes strongly against the claim that women or people of color actually have less innate intellectual talent of the type that’s required for STEM.59 This is not to say that marginalized and minoritized groups haven’t suffered from stereotypes and educational neglect to reduce their numbers, beginning early in their math and science classes.60 Field-specific ability beliefs lower diverse representation in part by making the atmosphere in these fields less welcoming and more hostile, such as creating a professional climate of normalized sexual harassment and discrimination against women.61 Because it is desirable for disciplines and fields to be more inclusive—both for social justice and for scientific success and objectivity—Leslie and her colleagues recommend highlighting the role of sustained effort for achieving top-level success in areas like physics, math, tech, and philosophy. Leslie emphasizes that we should praise our students for their effort and merit, not promoting ideas of inherent brilliance, saying, for example, “You worked so hard on this paper, and did a terrific job: you should be really proud of your achievement,” not “you have a real talent.” The big take-home message here is to think of the problems and solutions to biased research in cultural and structural terms: in order to challenge the unmerited power and privilege of white men in STEM and the systemic biases entrenched in scientific knowledge and practice, we need to promote diversity, inclusion, and equity in the workplace of research as well as the content of research.

CO N C LU S I O N Biases are sometimes transparent for all to see. Consider the title of the 2020 documentary, Picture a Scientist. What image comes to mind? For most audiences, the image of a white man, perhaps with facial hair and spectacles, leaps to mind. (The “ivory tower” takes on several figurative meanings of exclusion.) This film investigates such assumptions and the damage they do, exploring in depth some cases of sexual harassment that demonstrate how women students

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must often run a whole additional gauntlet than their peers who are men, usually without protection, recourse, or accountability for discrimination. Building on a report from the National Academies of Sciences, the film explains that explicit sexual advances are only the “tip of the iceberg” of sexual harassment, and that suffering verbal abuse, bullying, exclusion, sabotage, and more all fall under the surface of the deeper iceberg.62 In fact, this iceberg of sexual harassment and discrimination is one of the chief reasons that women of all backgrounds drop out of MS and PhD programs more than men, thus narrowing the pool of women to advance to professorships, with particularly detrimental effects for women of color in the double bind of racism and sexism.63 These are just some of the many forms of gatekeeping explored in the film, which is highly recommended for its coverage of cultural barriers for women and people of color trying to break into the bastion of science and other scholarly research utterly ruled and controlled by white men at the top. We draw hope and inspiration from the countless researchers who are trying to change exclusionary institutional structures and cultural attitudes about who a scientist is and challenging the culture of science to be more inclusive. Given that science is a social process, we must make the culture of research more equitable to make the research itself less biased and more fair for all people.

N OTE S 1.  Helen E. Longino, Science as Social Knowledge (Princeton, NJ: Princeton University Press, 1990); Matthew J. Brown, Science and Moral Imagination: A New Ideal for Values in Science, 1st ed. (Pittsburgh: University of Pittsburgh Press, 2020); Kevin Elliott, A Tapestry of Values: An Introduction to Values in Science (Oxford: New York: Oxford University Press, 2017); Heather Douglas, Science, Policy, and the Value-Free Ideal (Pittsburgh, PA: University of Pittsburgh Press, 2009); Alison Wylie, Thinking from Things: Essays in the Philosophy of Archaeology (Berkeley: University of California Press, 2002). 2.  See, for instance, Sandra Harding, The Science Question in Feminism (Ithaca: Cornell University Press, 1986). 3.  Patricia Hill Collins, Black Feminist Thought: Knowledge, Consciousness, and the Politics of Empowerment, 2nd ed. (New

York: Routledge, 1999); Angela Y. Davis, Women, Race, & Class (New York: Vintage, 1983); Dorothy E. Roberts, Killing the Black Body: Race, Reproduction, and the Meaning of Liberty (New York: Pantheon Books, 1997). 4.  Patricia Hill Collins and Sirma Bilge, Intersectionality (Cambridge, UK; Malden, MA: Polity, 2016). 5.  Jenny Reardon and Kim TallBear, “‘Your DNA Is Our History’: Genomics, Anthropology, and the Construction of Whiteness as Property,” Current Anthropology 53, no. S5 (April 2012): S233–45, https://doi.org/10.1086/662629; Donna Haraway, “Situated Knowledges: The Science Question in Feminism and the Privilege of Partial Perspective,” Feminist Studies 14, no. 3 (1988): 575–99, https://doi .org/10.2307/3178066. 6. Longino, Science as Social Knowledge; Elisabeth A. Lloyd, The Case of the Female Orgasm: Bias in the Science of Evolution (Cambridge, MA: Harvard University Press, 2005). 7. W. E. B. Du Bois, The Souls of Black Folk, Oxford World’s Classics (Oxford; New York: Oxford University Press, 2007), 3. 8.  Nancy Tuana, The Less Noble Sex: Scientific, Religious, and Philosophical Conceptions of Woman’s Nature (Bloomington: Indiana University Press, 1993). 9. Charles Darwin, The Descent of Man and Selection in Relation to Sex (London: John Murray, 1871), 557, 563, http://darwin-online.org.uk/content/frameset?pageseq =1&itemID=F955&viewtype=text. 10.  Ruth Hubbard, “Have Only Men Evolved?,” in Discovering Reality: Feminist Perspectives on Epistemology, Metaphysics, Methodology, and Philosophy of Science, eds. Sandra Harding and Merrill B. Hintikka (Dordrecht, The Netherlands: Kluwer Academic Publishers, 1983), 45–69. 11.  Adrian Desmond and James Moore, Darwin’s Sacred Cause (Boston: Houghton Mifflin Harcourt, 2009). 12.  Stephen Jay Gould, The Mismeasure of Man (New York: W. W. Norton & Company, 1981). 13. Michael Weisberg, “Remeasuring Man,” Evolution & Development 16, no. 3 (May 2014): 166–78, https://doi .org/10.1111/ede.12077. 14.  Paul Wolff Mitchell, “The Fault in His Seeds: Lost Notes to the Case of Bias in Samuel George Morton’s Cranial Race Science,” PLOS Biology 16, no. 10 (October 4, 2018): e2007008, https://doi.org/10.1371/journal.pbio.2007008; Jonathan Michael Kaplan, Massimo Pigliucci, and Joshua Alexander Banta, “Gould on Morton, Redux: What Can the Debate Reveal about the Limits of Data?,” Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences 52 (August 2015): 22–31, https://doi.org/10.1016/j.shpsc.2015.01.001. 15.  Gould, The Mismeasure of Man; Tuana, The Less Noble Sex. 16.  Alice Lee, “Data for the Problem of Evolution in Man. VI. A First Study of the Correlation of the Human Skull,” Philosophical Transactions of the Royal Society of London. Series A, Containing Papers of a Mathematical or Physical Character Race and Gende r in Resea r ch 

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196 (1901): 225–64; Cynthia Russett, Sexual Science: The Victorian Construction of Womanhood, revised edition (Cambridge, MA: Harvard University Press, 1991). 17.  Collins and Bilge, Intersectionality. 18.  Sadiah Qureshi, “Displaying Sara Baartman, the ‘Hottentot Venus,’” History of Science 42, no. 2 (June 1, 2004): 233–57, https://doi.org/10.1177/007327530404200204. 19. Anne Fausto-Sterling, Sexing the Body: Gender Politics and the Construction of Sexuality, updated edition (New York, NY: Basic Books, 2020). 20. Fausto-Sterling, Sexing the Body. 21.  Janet A. Kourany, “Should Some Knowledge Be Forbidden? The Case of Cognitive Differences Research,” Philosophy of Science 83, no. 5 (June 16, 2016): 779–90, https:// doi.org/10.1086/687863. 22. Elisabeth A. Lloyd, “Adaptationism and the Logic of Research Questions: How to Think Clearly about Evolutionary Causes,” Biological Theory 10, no. 4 (July 9, 2015): 343–62, https://doi.org/10.1007/s13752-015-0214-2. 23.  Deboleena Roy, “Neuroscience and Feminist Theory: A New Directions Essay,” Signs: Journal of Women in Culture & Society 41, no. 3 (Spring 2016): 531–52. 24. See also Eva Feder Kittay, Love’s Labor: Essays on Women, Equality and Dependency (New York: Routledge, 2020). 25. Robyn Bluhm, “Values and Evidence in Feminist Philosophy and in Neuroscience,” in Meta-Philosophical Reflection on Feminist Philosophies of Science (Springer, 2016), 91–111; for a similar analysis about sex chromosomes, see also, Sarah S. Richardson, Sex Itself: The Search for Male and Female in the Human Genome (Chicago, IL: University of Chicago Press, 2013). 26.  Charlotte Philby, “Serena Williams and the Realities of the ‘Maternal Mortality Crisis,’” The Guardian, February 21, 2018, sec. Life and Style, https://www.theguardian.com /lifeandstyle/shortcuts/2018/feb/21/serena-williams-ma ternal-mortality-crisis; Myra J. Tucker et al., “The Black– White Disparity in Pregnancy-Related Mortality from 5 Conditions: Differences in Prevalence and Case-Fatality Rates,” American Journal of Public Health 97, no. 2 (February 2007): 247–51, https://doi.org/10.2105/AJPH.2005.072975; Andreea A. Creanga et al., “Racial and Ethnic Disparities in Severe Maternal Morbidity: A Multistate Analysis, 2008–2010,” American Journal of Obstetrics and Gynecology 210, no. 5 (May 2014): 435.e1-8, https://doi.org/10.1016/j .ajog.2013.11.039; D. L. Hoyert, “Maternal Mortality Rates in the United States, 2019,” NCHS Health E-Stats, June 10, 2021, https://doi.org/10.15620/cdc:103855. 27. Priti Patel, “Forced Sterilization of Women as Discrimination,” Public Health Reviews 38, no. 1 (July 14, 2017): 15, https://doi.org/10.1186/s40985-017-0060-9; Johanna Schoen, Choice & Coercion: Birth Control, Sterilization, and Abortion in Public Health and Welfare, Gender and American Culture (Chapel Hill: University of North Carolina Press, 2005); Roberts, Killing the Black Body. 126 

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28. Nancy C. M. Hartsock, “The Feminist Standpoint: Developing the Ground for a Specifically Feminist Historical Materialism,” in Discovering Reality (Dordrecht, The Netherlands: Springer, 1983), 283–310, https://link .springer.com/chapter/10.1007/0-306-48017-4_15. 29.  Oyèrónkẹ́ Oyěwùmí, The Invention of Women: Making an African Sense of Western Gender Discourses (Minneapolis: University of Minnesota Press, 1997). 30. Londa Schiebinger, Has Feminism Changed Science? (Cambridge, MA: Harvard University Press, 2001); Nancy Tuana, “The Speculum of Ignorance: The Women’s Health Movement and Epistemologies of Ignorance,” Hypatia 21, no. 3 (August 1, 2006): 1–19, https://doi .org/10.1111/j.1527-2001.2006.tb01110.x. 31.  Liberty Walther Barnes, Conceiving Masculinity: Male Infertility, Medicine, and Identity (Temple University Press, 2014), https://muse.jhu.edu/book/34929; Adele E. Clarke, Disciplining Reproduction: Modernity, American Life Sciences, and the Problems of Sex (Berkeley: University of California Press, 1998); Nelly Oudshoorn, The Male Pill: A Biography of a Technology in the Making, 1st ed. (Durham, NC: Duke University Press Books, 2003). 32.  Ornella Moscucci, The Science of Woman: Gynaecology and Gender in England, 1800–1929 (Cambridge University Press, 1993). 33.  Rene Almeling, GUYnecology: The Missing Science of Men’s Reproductive Health (University of California Press, 2020). 34.  Harriet A. Washington, Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present, reprint edition (New York: Anchor, 2008), 64. 35.  Katie Baiocchi, “Let’s Honor the Mothers of Modern Gynecology,” Awaken: The Creative Journal of Contemporary Bioethics (blog), February 9, 2018, https://awakenwfu .com/2018/02/09/lets-honor-the-mothers-of-modern -gynecology/. 36. Susan M. Reverby, “Ethical Failures and History Lessons: The US Public Health Service Research Studies in Tuskegee and Guatemala,” Public Health Reviews 34, no. 1 (2012): 13. 37. Susan M. Reverby, “‘Normal Exposure’ and Inoculation Syphilis: A PHS ‘Tuskegee’ Doctor in Guatemala, 1946–1948,” Journal of Policy History 23, no. 1 (February 3, 2011): 6–28. 38. Washington, Medical Apartheid. 39.  David J. Rothman, Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making, 2nd ed. (New York: Aldine de Gruyter, 2003). 40.  FDA, “General Considerations for the Clinical Evaluation of Drugs” (Washington, DC: Food and Drug Administration, 1977). 41.  Ruth B. Merkatz and S. W. Junod, “Historical Background of Changes in FDA Policy on the Study and Evaluation of Drugs in Women,” Academic Medicine: Journal of the

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Association of American Medical Colleges 69, no. 9 (September 1994): 706, https://doi.org/10.1097/00001888-199409000 -00004. 42.  MRFIT Research Group, “Multiple Risk Factor Intervention Trial: Risk Factor Changes and Mortality Results,” JAMA 248, no. 12 (September 24, 1982): 1465–77, https:// doi.org/10.1001/jama.1982.03330120023025. 43. Steven Epstein, Impure Science: AIDS, Activism, and the Politics of Knowledge (Berkeley: University of California Press, 1996). 44. Anke Bueter, “Androcentrism, Feminism, and Pluralism in Medicine,” Topoi 36, no. 3 (September 1, 2017): 521–30, https://doi.org/10.1007/s11245-015-9339-y. 45.  Steven Epstein, Inclusion: The Politics of Difference in Medical Research (Chicago: University of Chicago Press, 2007); Anna Mastroianni and Jeffrey Kahn, “Swinging on the Pendulum: Shifting Views of Justice in Human Subjects Research,” Hastings Center Report 31, no. 3 (2001): 21–28, https://doi.org/10.2307/3527551. 46.  FDA, “Study and Evaluation of Gender Differences in the Clinical Evaluation of Drugs,” 1998, https://www.fda .gov/regulatory-information/search-fda-guidance-doc uments/study-and-evaluation-gender-differences-clin ical-evaluation-drugs; Merkatz and Junod, “Historical Background of Changes in FDA Policy on the Study and Evaluation of Drugs in Women.” 47. NIH, “Inclusion of Women and Minorities as Participants in Research Involving Human Subjects,” 2021, https://grants.nih.gov/policy/inclusion/women-and-mi norities.htm; Epstein, Inclusion. 48. Mary Anne Burke and Margrit Eichler, The BIAS FREE Framework: A Practical Tool for Identifying and Eliminating Social Biases in Health Research (Geneva: Global Forum for Health Research, 2006); Christopher ChoGlueck, “Still No Pill for Men? Double Standards & Demarcating Values in Biomedical Research,” Studies in History and Philosophy of Science Part A 91 (2022): 66–76. 49. UNESCO, “Just 30% of the World’s Researchers Are Women. What’s the Situation in Your Country?,” March 5, 2014, https://en.unesco.org/news/just-30-world %E2%80%99s-researchers-are-women-whats-situation -your-country; National Research Council and National Academy of Engineering, Career Choices of Female Engineers: A Summary of a Workshop, ed. Sara Frueh (Washington, DC: The National Academies Press, 2014), https://doi .org/10.17226/18810. 50. National Academies of Sciences, Engineering, and Medicine, Promising Practices for Addressing the Underrepresentation of Women in Science, Engineering, and Medicine: Opening Doors (Washington, DC: The National Academies Press, 2020), https://doi.org/10.17226/25585. 51. National Academies of Sciences, Engineering, and Medicine, An American Crisis: The Growing Absence of Black

Men in Medicine and Science: Proceedings of a Joint Workshop (Washington, DC: The National Academies Press, 2018), https://doi.org/10.17226/25130. 52. Longino, Science as Social Knowledge; Lloyd, The Case of the Female Orgasm; Wylie, Thinking from Things. 53. Anna Reser and Leila McNeill, Forces of Nature: The Women Who Changed Science (London: Frances Lincoln, 2021); Marybeth Gasman and Thai-Huy Nguyen, Making Black Scientists: A Call to Action, Making Black Scientists (Harvard University Press, 2019), https://doi.org /10.4159/9780674242364. 54.  Elisabeth A. Lloyd, “Constitutional Failures of Meritocracy and Their Consequences,” HOPOS 3, no. 1 (Spring 2013): 142–44, https://doi.org/10.1086/669956. 55. C. A. Moss-Racusin et al., “Science Faculty’s Subtle Gender Biases Favor Male Students,” Proceedings of the National Academy of Sciences 109, no. 41 (October 9, 2012): 16474–79, https://doi.org/10.1073/pnas.1211286109. 56.  RBG [Documentary Film] (Magnolia Home Entertainment, 2018). 57. Sarah-Jane Leslie et al., “Expectations of Brilliance Underlie Gender Distributions across Academic Disciplines,” Science 347, no. 6219 (January 16, 2015): 262–65, https://doi.org/10.1126/science.1261375. 58.  National Research Council and Engineering, Career Choices of Female Engineers. 59. National Academies of Sciences, Engineering, and Medicine, The Impacts of Racism and Bias on Black People Pursuing Careers in Science, Engineering, and Medicine: Proceedings of a Workshop (Washington, DC: The National Academies Press, 2020), https://doi.org/10.17226/25849; National Research Council and Engineering, Career Choices of Female Engineers; National Academies of Sciences, Engineering, and Medicine, Promising Practices. 60.  Steven J. Spencer, Christine Logel, and Paul G. Davies, “Stereotype Threat,” Annual Review of Psychology 67 (2016): 415–37, https://doi.org/10.1146/annurevpsych-073115-103235; Jenessa R. Shapiro and Amy M. Williams, “The Role of Stereotype Threats in Undermining Girls’ and Women’s Performance and Interest in STEM Fields,” Sex Roles 66, no. 3–4 (February 2012): 175–83, https://doi.org/10.1007/s11199-011-0051-0. 61. National Academies of Sciences, Engineering, and Medicine, Sexual Harassment of Women: Climate, Culture, and Consequences in Academic Sciences, Engineering, and Medicine, eds. Paula A. Johnson, Sheila E. Widnall, and Frazier F. Benya (Washington, DC: The National Academies Press, 2018), https://doi.org/10.17226/24994. 62. National Academies of Sciences, Engineering, and Medicine, Promising Practices. 63. National Academies of Sciences, Engineering, and Medicine, Promising Practices.

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SEC TION IV

THE POLITICS OF HEALTH CARE

CHAPTER 12

Priority Setting in Health Care Eric Roark

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his chapter explores issues related to the resource allocation and priority setting of medicine and health care services (MHCS). The chapter begins by outlining the primary features of MHCS. Once these features of MHCS are outlined, the chapter then examines ways to think about MHCS within the context of resource allocation within a political community. MHCS are almost always designed, developed, and distributed within a political framework that is tasked with addressing the question: How ought we as a political community prioritize and allocate MHCS? To address this question a Rawlsian approach to the priority setting and allocation of MHCS is given special consideration. The chapter concludes by reviewing medical technologies such as non-human organ transplantation and CRISPR gene-editing technologies and by discussing how such developments might be thought of in terms of allocation and priority setting.

M HCS: BASIC F O U NDAT I O NS Before discussing the allocation and priority setting of MHCS, it is important to consider and specify the types of goods and services or resources that MHCS are. (Throughout I will generally refer to MHCS as resources as opposed to goods and services, although either designation generally works well to describe 130

them.) Understanding the types of resources that MHCS are is essential to analyzing how MHCS ought to be treated in terms of allocation and priority setting. For just about everyone, their health, both physical and mental well-being, is one of the most important aspects of their lives. Our lives are generally better when we experience good health and worse when we do not. Good health might not be sufficient for the good life, but for just about everyone it is necessary. To put this in Aristotelian terms, it is difficult to flourish as a person when suffering from poor health. Health and with it access to MHCS are on par of importance with access to basic resources such as basic nutrition and physical safety. MHCS, however, differs from resources like food or potable water because its variance of use is much less evenly distributed among people. All people must eat and drink on a regular basis to survive, but the same is not true for the use of MHCS. Some individuals might need daily medical interventions in order to survive, such as a daily medication, and others might live long lives without ever, or very seldom, using MHCS. This difference in variance can play an important role in how MHCS is treated within a sociocultural and political context. Consider, for instance, the ways in which a society might treat the idea of luck, a factor that plays a strong role in one’s health and use of MHCS. This can be seen by considering the luck involved with a person’s genetic makeup or

unavoidable environmental conditions that contribute to health that a person experiences in their youth and beyond. If the general social belief is that those who are lucky, in health or other matters, should be able to benefit from luck and vice versa those who are unlucky should accept the burdens of that status, then this will have important ramifications for how the social and political community treats matters of priority setting and allocating MHCS. Aside from being subject to a high degree of individual variance in terms of use, MHCS are also often scarce resources. A community, for instance, will only have so many hospital beds and trained medical professionals to care for patients in those beds. The same can also be said about a scarcity of proficient surgeons or pieces of complex medical equipment. This consideration of scarcity is noteworthy because whenever a resource is scare, then, by necessity, rationing, in some manner, must occur. The rationing of MHCS may be subtle or glaringly apparent, but it will almost always be present to some degree. For example, even if everyone in a community is able to receive a heart surgery when needed, it is very unlikely, just as a pragmatic matter, that everyone will be able to receive that surgery from the best surgeon. Some method of rationing will decide who receives the best surgeon, who receives the second-best surgeon, and so on. The manner and scope in which MHCS undergo rationing will depend greatly on the priority setting of the political community in which these resources exist. A classic case of rationing MHCS can be seen with the military triage model.1 The general idea behind the triage model is that you help everyone who needs MHCS as much as possible, but in an emergency, like a heavy casualty combat event, you help those first who have a better likelihood of being saved. With more resources, ideally, everyone, including those with a low chance of survival, would be aided as much as possible, but when MHCS are limited, practitioners ration care under the triage model to save as many as possible. Often the triage model and its considerations are limited to warfare and other emergency situations, but the implications are far wider. This is because, in a sense, triage-style considerations are ever-present as MHCS are concerned

because of the uncertainty surrounding future emergencies. Because of this, political communities decide, or neglect to decide, how present needs ought to be balanced against potential needs in the future. Thus far we have seen how MHCS are resources that are extremely important to us, involve a considerable amount of individual variance in terms of use, and will, by necessity, involve considerations of rationing. One further point about the types of resources that MHCS are is in order. MHCS are resources that, especially in the context of modern medicine, require the complex organizational and structural support of a political community. To see why this is the case, consider the working of a modern large hospital that is able to offer a broad range of services to patients. We can start by noting the massive amount of public infrastructure that is present for the hospital to function at all. This can be seen by noting the roads and emergency lanes that allow people and emergency vehicles to travel to the hospital as well as an air traffic system that allows helicopters to airlift emergency patients. Note the large-scale public utilities needed for the hospital to offer care such as extensive electrical and water supplies as well as sanitation services. When we walk inside the hospital, we can see all sorts of various medical professions who were educated in institutions, internationally, that were developed and supported by political communities. Looking even closer, we can see that the medications being given and complex medical devices were designed, developed, and approved for use within political communities. These are just a few examples that leave little doubt that MHCS are resources that exist and depend upon political communities and the decisions that these communities make about them. To recap, MHCS are resources that • play a vital role in our lives and well-being • have a high degree of variance in terms of individual use • must often undergo some type of rationing due to scarcity • are had, in a modern context, by virtue of political communities P r io r ity S ettin g in H ealth C a r e 

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MHCS are extremely important to us as individuals, but they exist only in the context of a collaborative effort of many people within political communities. Simply put, without political communities, there would be nothing resembling modern medicine and health care services. As such any successful effort to understand the priority setting and allocation of MHCS must treat them as resources that come about within a social and political environment that deeply affect us on an individual level. This being the case, the focus now turns to how to think about MHCS as resources within political communities.

PO LITIC AL CO MMU NI T I E S AND MHCS Before delving into the role that political communities play, and ought to play, with the priority setting and allocation of MHCS, it is important to address an objection that some might see with this approach. I maintain that MHCS are resources that largely derive from a social and political context, and as such, thinking about them in a thoroughgoing way must involve a discussion of political communities and their role with priority setting and allocation of MHCS. For some that approach will problematically focus on public, as opposed to private or individual, considerations. A person might think that questions concerning the priority setting and allocation of MHCS should be decided primarily or exclusively by individuals or private parties acting within private markets, and as such, this talk of MHCS as having a social and political character misses the mark. But that objection to the approach I suggest is misguided. To see why, image that a political community decides that it wants MHCS to be completely in private hands and to be rationed using strictly free market economic measures. That method can be critiqued and either supported or rejected as the best way to approach MHCS. But notice that this method of addressing MHCS is still one that a political community settled on and decided to implement and supports through policy and law, for example, laws supporting the private property rights of those within such a system. 132 

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Even the most radically laissez-faire methods of allocating MHCS, involving more than the most basic barter system, can exist only within a codified political and legal structure. The question of how to address the allocation and priority setting of MHCS is a political question even when the political answer might be to foster MHCS within a strictly privatized economic structure. If, as there is a good reason to support, questions surrounding the priority setting and allocation of MHCS must be decided by political communities, we can now turn to ask: How might a political community approach questions surrounding the allocation of MHCS? To address this question, I will first survey some basic approaches traditionally given and then turn toward ideas offered by John Rawls.

T R A DI T I O N A L A P P R OAC H E S TOWA R D T H E A L LO C AT I O N OF MHCS The standard traditional approaches toward deciding how to allocate MHCS within a political community fall broadly into the following categories: utilitarian, sufficientarian, and egalitarian. A survey of those basic positions is as follows: Utilitarian Approach: MHCS should be allocated so as to maximize the overall social good or utility within a political community. Sufficientarian Approach: MHCS should be allocated so as to provide a sufficient or basic level of care to as many people as possible within a political community. Egalitarian Approach: MHCS should be allocated in some type of equal fashion among members of a political community. This is a very basic outline of each position, and all three can quickly become nuanced and leave ample room for thoughtful analysis and critique. Utilitarian approaches toward MHCS are attractive because they emphasize allocating these resources in a manner that maximizes the utility or

good in the social world that we share. This approach is aimed at using MCHS to improve the world in an overall sense, and that idea has a great deal of intuitive appeal for many. A drawback here, however, might involve basic considerations of fairness and equity. Imagine a scenario where MHCS could be used to treat either one person who will die without the care or one hundred who will die without the care. In many cases, treating the hundred might seem like the obvious choice, and indeed in many cases the utilitarian would agree. But there might be cases in which saving the life of the one as opposed to the others could maximize the overall social good. That scenario might occur if the one person being saved plays an especially important role in promoting the social good, for instance, if that person plays an instrumental part in a project involving medical research that could glean developments that might save thousands or even millions of people. A related difficult example here for the utilitarian is how to treat the allocation of MHCS for individuals, who for whatever reason, cannot be reasonably expected to contribute much or at all to the overall social good. Should a factor such as this impact the allocation of MHCS to such individuals? These examples demonstrate that there are difficult moral calculations to consider here for those that endorse a utilitarian approach to the allocation of MHCS. To be sure, those that defend a utilitarian position can offer responses here, but it is an open question if the responses given would prove satisfactory to most observers. Sufficientarian approaches also carry a good amount of appeal. They focus on allocating MHCS in ways that provide as many people as possible in a political community access to a baseline or sufficient level of medical care. The view, for many, has intuitive appeal because it focuses on allocations that are sensitive to the basic health care needs of all people within a political community, but the view also faces a number of challenges and questions. For starters, a political community would have to decide what counted as “sufficient medical care” for their members. Would this mean enough care to survive or would a higher standard of sufficient medical care be in order, and if a higher standard than survival

should be adopted, what ought that higher standard to be? It seems possible for a political community to decide these questions, but note that when they did, this would inevitably invoke moral ideas concerning values such as quality of life that go beyond sufficientarianism. We can delve further here and ask how ought MHCS be allocated once everyone in a political community has reached a sufficient allocation of MHCS? A sufficientarian view could provide a solid starting point of analysis when a political community decides how to allocate MHCS but would likely need to appeal to further ethical ideas to provide a comprehensive approach. Egalitarian approaches maintain that the allocation of MHCS ought to be done in some fashion that is equitable among members of a political community. Again, this view, like utilitarianism and sufficientarianism, has intuitive appeal for many. But like the other traditional approaches, it also faces tough questions. The most basic among these is how a political community ought to treat the deceptively complex notion of equality. Equality as a moral concept is often not treated the same as sameness and can be thought about and analyzed in many ways. For example, an egalitarian might suggest that the morally relevant unit of analysis to equalize is “equal outcomes for people” through the allocation of MHCS. Other egalitarians would disagree and suggest that what ought to be equalized is “equal opportunities for people” through the allocation of MHCS. And yet other egalitarians would stress the importance of allocating MHCS in ways that mitigate the impacts of luck had by members of a political community. None of this is to suggest that egalitarian views are not plausible approaches for a political community to use when deciding the allocation of MHCS. But it does suggest that merely invoking an egalitarian standard ought to draw the reaction: Which type of egalitarianism is being endorsed ahead of numerous competing conceptions, and why ought the proposed treatment of equality to be seen as superior to competing treatments. Each of these three approaches could warrant their own chapters related to the allocation of MHCS because they all present plausible, rich, and complex P r io r ity S ettin g in H ealth C a r e 

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foundations, but here my goal is to give an outline of these views and introduce a few of the interesting complexities with them. I will now present an alternative to these traditional approaches, inspired by John Rawls and his treatment of justice.

R AWLS’ THE O RY O F JU ST I CE A ND TH E ALLOC AT I O N O F MH CS In 1973 Rawls published his groundbreaking work, A Theory of Justice.2 That work offers a thorough theoretical basis for the idea that justice should be thought of as fairness—an idea Rawls uses frequently throughout A Theory of Justice. But treating justice as fairness, although highly intuitive for many, was not a novel or radical idea in the twentieth century. Rawls’ important contributions involved offering novel ways in which to support the idea that justice is fairness. He offered this support through two theoretical constructions owing to the legacy of social contract theory. These ideas were the original position and the veil of ignorance. I will now turn to both ideas and discuss how they can be applied to the allocation of MHCS. Rawls constructs his original position to imagine how a society might go about creating rules of justice from a previous state where no such rules have existed. He asks that we imagine a world where people are not previously bound by a codified political community. These people, having no previous political relationship, come together to create a political community and with it the rules of justice that will govern them. These people are rational and self-interested, meaning that they will not agree to rules of justice that disadvantage them as individual persons.3 Further Rawls suggests that any proposed rule of justice would have to be agreed upon by everyone in unanimous fashion if it is to be binding on everyone in the newly created political community. What makes Rawls’ account of justice novel, and of particular interest, is his use of a “veil of ignorance” by those creating the rules of justice.4 Rawls reasons that the primary impediment to justice, or with creating a just political community, is that when 134 

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creating rules of justice, self-interested persons will use their knowledge of morally arbitrary traits about themselves to favor themselves at the expense of others. For instance, in the original position, people might look around and see that they and most others do not suffer from serious health problems, so when deciding rules of justice they might decide to create rules that offer little public support to those with serious health problems because as a self-interested matter they reason that they do not, or will not, need such aid. Rawls’ point here is strong and compelling. The history of injustice often involves some person or group of persons taking advantage of morally arbitrary traits that they possess and then codifying this injustice through differential rules formalized through law. It is in response to this problem where Rawls utilizes the idea of a “veil of ignorance.” Rawls maintains that those acting in the original position have extensive knowledge about the world and about features of themselves that are not morally arbitrary, but that people are blinded or have a “veil of ignorance” in respect to their morally arbitrary features. As such people in the original position would know that water contains two atoms of hydrogen and one atom of oxygen, but they would not know their gender identity, racial identity, sexual orientation, health status, disability status, or any other morally arbitrary features or traits about themselves. Rawls maintains that when self-interested people within the original position operate under the veil of ignorance, then they will select rules of justice for their burgeoning political community, which are just and abide by the fundamental idea that justice is fairness. Oddly perhaps, it is less knowledge, or at least less knowledge about our morally arbitrary traits, that is crucial for achieving rules that establish just political communities. Rawls suggests that two general rules of justice will result from the previously mentioned set of circumstances: the liberty principle and the difference principle.5 The liberty principle suggests that people in the original position will endorse the most maximally consistent set of liberty conditions. That is, people will endorse as much liberty as possible that can be enjoyed in a consistent fashion by all. The difference

principle suggests that people will endorse inequalities in society only insofar as these inequalities serve to make the worse off better than they would have been absent the inequality. The difference principle suggests that people operating under the veil of ignorance will be generally disposed to a roughly equal allocation of resources, MHCS included, but they will allow for inequalities when doing so makes the position of the worse off better than under a system of more equal distribution. With this broadly Rawlsian approach to justice in mind, we can ask: What implications might adherence to Rawls’ method for establishing just rules within a political community have concerning the allocation of MHCS? First, it is worth emphasizing that under the veil of ignorance people will not know their health or disability status. This is relevant as it relates directly with one of the four primary features of MHCS, namely the feature of having a high degree of individual variance in terms of use. Presumably that feature will still be true under a Rawlsian model, but the crucial difference is that under the veil of ignorance people will not know how that variance impacts their own individual case. That lack of knowledge will very likely make someone deciding rules of justice under the veil of ignorance very cautious in how they approach rules governing the allocation of MHCS, directly or by implication. It is extremely unlikely, for instance, that any self-interested person operating under the veil of ignorance would support a rule that says a needed medication, surgery, organ, or any other aspect of MHCS should be allocated, and in effect rationed, according to whoever has more money to secure the resource. The reason for this is clear. The person deciding such a thing under the veil of ignorance has no idea the extent to which they will need MHCS to survive, nor how wealthy they will be. Given that no one under the veil of ignorance is aware of their financial status or ability to earn income, agreeing that MHCS be allocated according to wealth would make about as much sense as allocating MHCS based upon height or ear lobe circumference. There would simply be little rational basis for a self-interested person operating under the veil of ignorance

to support a rule that declares MHCS should be allocated on the basis of wealth. That decision is a far-too-risky gamble with one’s very life for any self-interested person to make. If people acting under the veil of ignorance would not agree to allocating MHCS based upon wealth or ability to pay, how then might they approach the issue? The lack of knowledge regarding one’s own individual health or disability status would tend to favor decisions about allocating MHCS to be made primarily along the lines of medical need. A basic rule being that those who medically need MHCS should get them before another with lesser need. This approach could blend elements of egalitarian and sufficientarian thought noted in the last section. Such a rule acknowledges that the rationing of MHCS is likely inevitable and addresses scarcity by rationing based upon medical need and not a criterion such as ability to pay. It is difficult to see how rational self-interested persons operating under a veil of ignorance would come up with a different general rule of justice regarding the allocation of MHCS. It is also not difficult to see why people who do not operate under a veil of ignorance and know morally arbitrary traits about themselves such as health and disability status or financial status are more likely to settle on alternative means of allocation. Even if a person endorses a broadly Rawlsian approach to deciding how a political community ought to allocate MHCS, they could think the previous discussion lacks practical application because after all no one can actually wear a veil of ignorance, so the thought device, while intriguing, lacks practical usefulness. That thought is understandable, but it fails to take into proper account aspects of MHCS where actual practice matches well with what people operating under the veil of ignorance in the original position would likely decide. A strong example here is the way in which organ donation is handled within the United States and many other parts of the world. At least where the donation of organs is concerned, the present system in the United States coheres with exactly what one might expect to find agreed upon under the veil of ignorance. Except in cases of specific donation to a family member or close friend, all P r io r ity S ettin g in H ealth C a r e 

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donated organs are matched with recipients based on medical need with a detailed criteria system established by the medical community.6 It is a federal crime in the United States to sell an organ outside of the established organ transplant system.7 This example provides a clear case of at least one noteworthy aspect of MHCS where the rules that a political community can and have settled on look strikingly similar with what would likely be agreed upon under the veil of ignorance. Even though no one actually wears a veil of ignorance, people do have the capacity to employ capacities of imagination when deciding how to allocate MHCS within a political community. Beyond organ donations we can also see some attempts by existing political communities to embark on policies surrounding the allocation of MHCS that approximate a broadly Rawlsian approach. Examples of this include systems of Medicare and Medicaid within the United States and current systems of universal basic medical coverage in most parts of the developed world. The example of how the organ donation system is handled in the United States is especially noteworthy because it stands in stark contrast to ways in which other aspects of MHCS are allocated in the United States. The system of organ donation seems to approach the Rawlsian ideal of justice as fairness concerning the allocation of organs. But the same cannot be said for other lifesaving MHCS resources within the United States. This differential treatment of allocation practices of MHCS by a political community seems without merit because of basic inconsistency. The following question can be posed: What would a rational person think the moral difference might be between a lifesaving organ and a lifesaving medication, piece of medical equipment, or surgical procedure? In all cases, these are MHCS that keep a person alive and if successful, able to enjoy life. It is difficult, if not impossible, to find a consistent rational basis to justify why a political community would treat one of these lifesaving resources, for example, organs in a way consistent with a Rawlsian approach to justice and other lifesaving MHCS in a very different fashion.

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PRIORITY SETTING AND MHCS I will now turn to address the issue of priority setting MHCS within a political community. A helpful distinction here is that of internal and external constrains toward the prioritization of MHCS. We can think of MHCS as a basket of various resources, and we can imagine reaching in that basket and pulling out each of them and then lining them up on a table. We might think that every resource on the table is important, but the political community must still decide which of these resources to give greater priority or decide if it wishes to give the same priority to some or all of the resources. For example, we might pull out the resources used to provide free dental care to impoverished youth. And next to it sits the resources associated with cancer research. And next to both sits the resources for ensuring that more hospitals are equipped with advanced trauma care so that patients are not driven for over an hour in urban areas, as is not rare in the United States today, in search of a hospital that can treat their injuries. And of course there are lots of other MHCS resources on this large table as well. When a political community sets priorities on what is in this basket and set upon the table, that can be labeled internal prioritization of MHCS. Internal prioritization of MHCS can be contrasted with external prioritization. External prioritization occurs when a political community decides to set priorities involving MHCS with other priorities of different types. For example, a political community might decide if it is going to focus more resources toward public health or public education or public infrastructure or a whole host of other plans and projects that a political community might find value with and wish to pursue. Priority setting can be one of the most difficult tasks for any political community. While it is true that MHCS play a vital role in our lives and well-being, so do other things as well. And because of this, people can have honest value-driven debates concerning both the internal and external prioritization of MHCS. As far as the relationship between the internal and external priority setting of MHCS is concerned, it makes sense

that a political community ought to settle questions of external prioritization before it tries to address internal priority setting in any large-scale manner. The reason for this is primarily pragmatic. If a political community does not deal with the external priority setting of MHCS first, then it simply will not know what resources they are working with to address the internal priority setting of MHCS. Consider the following analogy. Say a person wants to renovate their bathroom. The bathroom renovation is the first priority for the home renovation budget. Fine and well, but before the homeowners begin to smash a bathroom wall, they ought to know what their home budget is generally and their priorities concerning things other than home renovations. And they can only know this by first prioritizing things external to the home renovation such as food, entertainment, transportation, and so forth. External priority setting of MHCS by the political community must come before internal priority setting of MHCS or to return to the analogy you might find yourself with a bathroom with no sink or a hospital system with not enough nurses. The role of risk adversity is also important when thinking about priority setting and MHCS. Some MHCS priorities have a virtually guaranteed positive result but with little potential for breakthrough upside potential. While other priorities are much less certain to yield any positive result, but if the result does come about, they could have tremendous upside potential. For example, say a political community is deciding what to do a with $1 million surplus that they have earmarked for MHCS. Here external priority is settled, so we can move to internal prioritization. The two proposals favored by the political community are as follows. The first option is that they can use $1 million toward a program to offer better prenatal care to low-income women. The program will most certainly help thousands both directly and indirectly. Concerning the second option, the political community can contribute to the funding of some promising cancer research. But as with all research, the results are far from certain, and the head of the research team is quoted as saying that she is extremely optimistic with present results but refused to offer any prediction of success but stressed the need for continued funding

to better realize the goals of the project. If successful, the cancer research might help millions of people live better lives. It is not obvious which option a political community ought to prioritize over the alternative. Proponents of both ideas could likely make a strong case for prioritizing one plan over the other. A more risk-averse political community is more likely to favor the first proposal because it will help many people and has a near-certain result. A less riskaverse political community would be more inclined to favor the second proposal because while the risk of success is much greater, the upside is much higher. A utilitarian analysis could help, in some cases, settle such disputes with respect to the priority setting of MHCS. One priority of MHCS might offer a thousand units of value with certainty, while another priority might offer a variable success rate of 10 percent of one 15,000 units of value. When one runs the utilitarian calculus on expected value, the second option offers 1,500 units of expected value while the first offers 1,000 units of expected value. One might say the second option is then preferable, and the matter is settled. But that answer, while clearly defensible, is not clearly correct because tolerance to risk still plays a meaningful role in which option to pursue. Utilizing expected utility as shown here can help in cases like this, but it is not a panacea for decision-making. An example can help demonstrate this. Say that a person has done all the needed calculations including tax considerations and has determined that the expected monetary value from a $1 lottery ticket is $1.50. If one ought to act only with an eye only toward expected value, then they ought to spend their entire life savings on lottery tickets with unlikely jackpots because that is the proper course of action in terms of expected value. But something seems wrong with giving this person the advice to follow expected value and spend her entire life savings on lottery tickets. The risk is just too great, even though it is the right decision in terms of expected value. Thus, while expected value can help with priority setting and uncertainty surrounding MHCS, it cannot be the entire story. A complete account would have to also include the risk tolerance of the political community that is engaged in priority setting. P r io r ity S ettin g in H ealth C a r e 

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TH E FUTURE O F A L LO C AT I O N A N D PR I ORIT Y SE T T I NG O F MH CS Thus far this chapter has covered: examining MHCS as unique types of resources and set forth four primary features of MHCS, the allocation of MHCS within a political community with special attention given to Rawls’ theory of justice, and priority setting surrounding MHCS. In this last section, the topic of future developments surrounding MHCS will be discussed. Many technological advancements will likely serve to change how the allocation and priority setting of MHCS are thought about by political communities. Two of these examples include artificial or animal-based organs used for human transplant and CRISPR gene editing. These two examples are far from a comprehensive list of the technological advancement that will impact how the allocation and priority setting of MHCS will change within political communities, but they do offer a good platform for thinking about how the future status of this issue is in flux and under ongoing assessment and revision. In October 2021, for the first time, a pig kidney was successfully transplanted into a human patient.8 Further, scientists are presently developing artificial machine-based organs and 3-D printed organs that soon might radically change the supply of organs available for transplant. A clear implication of this is that it is possible that in the next few decades the idea of human-to-human organ donation might become greatly reduced or rendered obsolete altogether. No longer would patients in need of an organ be placed on a waiting list hoping that a human organ match and transplant occur before organ failure. That would clearly be a significant medical advancement that would potentially save the lives of millions around the world. It will also alter the focus of both the allocation and priority setting of MHCS within political communities. Organ donation lists might become a thing of the past, but questions of allocation will remain. If humanto-human donation of organs is greatly reduced or eliminated, questions of allocation will shift more to questions about the surgical procedure of transplantation itself as well as the health care needs of patients 138 

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after transplant. With more people able to undergo organ transplants in the future, there will be a greater need for trained professional surgical teams that can perform the procedure as well as the health care needs of patients after surgery. Political communities will be charged with deciding how to allocate those scarce resources and how much public funding will be available for those aspects of organ transplant procedures. Even in a world with relatively inexpensive organs that could satisfy the entire medical need of all people, questions of allocation still loom. Having an abundance of access to artificial organs will not mean a great deal for the health of many people if funds for surgical procedures and after transplant care needs are held at minimal levels by political communities. A further technological advancement that might greatly impact the allocation and priority setting of MHCS by political communities is CRISPR gene-editing technology. This technology allows for gene editing at the earliest stages of life as well as offering therapeutic treatments for patients in adulthood.9 CRISPR gene editing has shown to achieve better health outcomes by editing genes to treat and, likely in the future, prevent detrimental genetic health conditions.10 Some speculate that this gene editing could, with future development, be used to manipulate general dispositions such as a tendency toward violence or creativity. The implications of CRISPR technology as it relates with the allocation and priority setting of MHCS are vast. As priority setting is concerned, a political community might decide to invest tremendous resources into developing CRISPR technology for a plethora of reasons. One reason might be in respect to the allocation of MHCS. If CRISPR technology can eliminate serious genetic conditions, then that will have both significant positive health impacts for individuals as well as positive economic impacts for those same individuals and their families as well as political communities generally. Given the amount of spending that many political communities extend toward MHCS, many would likely be very interested in developing CRISPR technology to reduce these costs while achieving better health outcomes for its members. Here we see considerations of priority setting

and allocation bump up against each other in a fairly clear way. Economic cost, however, is not the only reason why a political community might wish to set CRISPR development as a very high priority. Some of those with power in political communities might also wish to use CRISPR technology as a means to advance a certain vision of the members they wish to have. A political community might wish, for example, to have members who are non-violent, creative, and not prone to rebellion. It is an open question whether CRISPR could ever deliver such a thing, but it is not far-fetched to think that political communities might try to make investments to see if it can. This last point should give the reader pause and force us to ask: Do we want political communities using gene-editing technologies to create certain types of people?11 An answer to that question might turn out to be the most important bioethical consideration of the twenty-first century and shows us in a compelling way that we ignore the question of the allocation and priority setting of MHCS at our peril.

N OTE S 1.  For further information about the military triage system, see Elisabeth Falzone, P. Pasquier, C. Hoffmann, O. Barbier, M. Boutonnet, A. Salvadori, A. Jarrassier, J. Renner, B. Malgras, and S. Mérat, “Triage in Military Settings.” Anaesthesia Critical Care & Pain Medicine 36, no. 1 (2017): 43–51.

2.  John Rawls, A Theory of Justice, revised edition (Harvard University Press, 1999). 3.  See Rawls, Theory of Justice, 15–19, for a discussion of the original position. 4.  See Rawls, Theory of Justice, 118–23, for a discussion of the veil of ignorance. 5.  See Rawls, Theory of Justice, 52–56, for a discussion of these two principles of justice. 6. For an account of how the organ donation system in the United States operates, see “National Organ Transplant System,” UNOS, 2021 [online], https://unos .org/about/national-organ-transplant-system/, accessed November 7, 2021. 7. See, “National Organ Transplant System,” UNOS, 2021, https://unos.org/about/national-organ-transplant -system/, accessed November 7, 2021. 8.  “In a Major Scientific Advance, a Pig Kidney Is Successfully Transplanted into a Human,” npr.org, 2021, https://www.npr.org/2021/10/20/1047560631/in-a-ma jor-scientific-advance-a-pig-kidney-is-successfully-trans planted-into-a-h, accessed November 8, 2021. 9.  For a case where CRISPR was used as a form of treatment, see, “He Inherited a Devastating Disease. A CRISPR Gene-Editing Breakthrough Stopped It,” npr.org, 2021, https://www.npr.org/sections/health-shots/2021/06 /26/1009817539/he-inherited-a-devastating-disease -a-crispr-gene-editing-breakthrough-stopped-it, accessed November 9, 2021. 10.  See Heidi Ledford, “Landmark CRISPR Trial Shows Promise against Deadly Disease,” Nature.com, https:// www.nature.com/articles/d41586-021-01776-4, accessed November 8, 2021. 11.  For an excellent literary account of a society in which genetic editing is used to create a certain vision of a political community, see Aldous Huxley, Brave New World (New York: HarperPerennial, 2014), especially chapters 1 and 2.

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CHAPTER 13

Health Care Rights Richard Lauer

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ealth plays a central role in our lives—whether we can work, pursue life plans, or generally enjoy our lives depends on our health. Further, health is impacted by social, political, and economic circumstances and is distributed unequally. Given its centrality to our lives and its unequal distribution, should we posit a right to health care? This chapter surveys the discussion around this question. Specifically, it focuses on the discussion around the moral right to health care. It will focus on the legal right to health care only insofar as it relates to arguments for and against the existence of moral rights, though there are broad efforts to give moral arguments for the legal right to health care that do not rely on an appeal to the moral right to health (care).1 Some argue that the moral right to health care is grounded in the moral right to health. Others argue that there is such a right, and it can be derived from principles of distributive justice. Others still argue that there are no such rights, but nevertheless there still exists a moral obligation to provide access to health care carrying the same force as a right. The right to health and the right to health care are sometimes treated separately. However, skepticism about health care rights has sometimes been focused on the right to health. The right to health may require the state to provide (access to) whatever falls under the purview of health. That is, the right to health may 140

require the state to provide a particular outcome. On the other hand, the right to health care only guarantees access to services that would promote health. This has been the source of some controversy. If the right to health is understood as a right to a particular outcome, then that may generate rights to more than access to health services but also to the social determinants of health, like economic equality and education because of their health-promoting tendencies.2 But if there were such a right, some argue, then we would fall into a regress of satisfying individual needs, no matter how particular or idiosyncratic.3 This is clearly very demanding. Further, it has informed philosophers’ need to distinguish the right to health from the right to health care.4 While there are significant sources of skepticism concerning how successfully this distinction addresses these issues, I shall rely on this distinction to present some of the views in the literature.5 Research in this area is colored both by skepticism over the existence of a right to health or a right to health care, as well as a commitment to the view that the state has obligations to fulfill to individuals regarding their health. None in the discussion seem to deny that the state has a duty to its population. Where they differ is in the nature of that obligation, that is, whether the moral grounds include moral rights to health or health care. Further, the right to health or health care is often described in positive

terms—it is not merely a matter of preventing others or the state from interfering in health care decisions, but a question of what the state must provide to satisfy those rights. My goal in surveying this literature is to bring out some of the prominent philosophical themes central to this discussion. The chief points of disagreement concern the nature of rights and the nature of health. With respect to rights, we will see that the debate often turns on how we understand a right. Is the existence of a right, as Gopal Sreenivasan suggests, tied to rationing decisions? Or can rights play a role in deliberation about other aspects of distributing health care, that is, moral reasons for setting the budgets by which rationing decisions are constrained? With respect to health, we will see that there are both naturalistic and positive conceptions of health at play. Some prominent accounts, like that of Norman Daniels, rely on naturalist biostatistical views of health made famous by Christopher Boorse. Biostatistical accounts of health treat health as purely biological. Health is normal species functioning or normal biological functioning. Others that we will see in this chapter posit positive concepts of health that incorporate elements of well-being relevant to health outcomes, as we will see in the following with Matthew Liao’s fundamental conditions approach to health. As we will see, these philosophical differences will matter to what, ultimately, the right to health care amounts to. In particular, these differences yield different conclusions about the nature of the state’s obligation to provide access to health care services. My discussion will proceed in three parts. First, I focus on arguments for a right to health care that rest on claims about the right to health. I survey existing and possible criticisms of these arguments and along the way emphasize the way in which disagreements and objections rest on disagreement over the nature of rights. Second, I turn to arguments that ground health care rights in general theories of distributive justice and along the way emphasize concerns about the nature of health as used in this distributive justice-oriented approach. Finally, I consider arguments that yield an entitlement to health care but that fall short of positing a right to health care.

FR O M T H E R I G H T TO H E A LT H TO T H E R I G H T TO H E A LT H C A R E One way to defend the right to health care is to draw on premises about the right to health. Another is to rely on premises about other rights individuals possess. I focus first on using the right to health to justify the right to health care. If we have a right to health, then it can serve as the basis for a right to health care. For example, one way to do this is to appeal to health as a part living a minimally effective or good life and to posit rights to whatever promotes or supports a minimally good life (e.g., health). This is how Matthew Liao approaches this issue—he calls his approach the fundamental conditions approach.6 In this approach, human beings have a right to the fundamental conditions associated with the good life. One of these conditions is basic health, which is the “adequate functioning of various parts of our organism that are needed for the development and exercise of the basic capacities.”7 And so, people have a right to (basic) health. The right to basic health entitles one not only to basic health services but to some of the social determinants of health as well. Therefore, a right to basic health generates a right to health care, or at least those services required to sustain basic health, as well as a right to education, and may even guarantee some economic rights, since economic conditions impact health. The fundamental conditions approach promises a substantive basis for the right to health care. If we have rights to basic health, then it seems there are obligations possessed by individuals or the state to ensure that we receive what we need to have the highest probability of achieving basic health. This has significant ramifications for the aims of public health. Protecting the health of the population on this approach may require providing education as well as access to health services. Intuitively, this would include access to other public services, like vaccines to stave off a pandemic that stymies individuals’ efforts to develop their basic faculties. While drawing on a general conception of health has powerful intuitive appeal, there are plausible concerns with any form of the right to health that we H ealth C a r e Ri g hts 

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need to consider. Specifically, given that rights entail obligations or duties and given that individuals or the state need to be able to satisfy those obligations or duties, we should consider whether there are any practical constraints on the ability of those who are (presumably) obligated to promote or safeguard health to do so. This puts pressure on the assumption that there are rights to the fundamental conditions for the good life—if it is impractical to implement a right to health, then human beings may have no such rights. Further, the absence of these rights may indicate limits on the scope of the state’s obligations to protect the health of the population, as well as the exact moral grounds for those obligations. Consider what I will call the objection from guidance discussed by Gopal Sreenivasan and criticized by Nicole Hassoun.8 According to this argument, if there is a right to health, it should guide decisions about how to allocate health resources. But a right to health cannot guide decisions about how to allocate health resources. Therefore, there is not a right to health. Here, the right to health is construed as the right to the socially controllable determinants of health, which include the social conditions needed to pursue to live an effective life. The most contentious claim in this argument is the claim about the connection between having a right and playing a role in allocation decisions. This view has some precedence in the literature. For example, Norman Daniels requires rights-based approaches to deal with questions about distribution like these.9 He ties these health-related rights to allocation explicitly, “A rightsbased approach is directly concerned with equity in the allocation and utilization of resources.”10 Sarah Conly also seems to base the existence of a right to health care in concerns about rationing or allocation because, in her view, the health services provided cannot be too costly to the provider (suggesting that specific services will need to be prioritized and not all will be included).11 Further, Gopal Sreenivasan claims that health care rationing is a requirement of justice. That is, the question about the distribution of health care services cannot rest on a right to health because health care services must be rationed between individuals and that such rationing means 142 

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making difficult decisions about who receives these services as well as which services are available. Sreenivasan writes: Things would be rather different, in this respect, if health care rationing were not itself a requirement of justice. For then a human claim-right to health (care) could be combined with evidence to the effect that this or that particular treatment or intervention is medically effective—or, better, is the most effective for the relevant condition—to license the conclusion that there is a human right to that treatment or intervention (for those who need it).12 If there were a right to health, the fact that health services must be rationed implies that for any actual situation in which health services are distributed, at least one person will have their right to health violated, even the sick.13 So, we cannot guarantee access to health, much less particular medical services, because rationing decisions frustrate the efforts to fulfill the right. Nevertheless, it is reasonable to ask whether something’s status as a right requires a role in rationing decisions. That is: Could there be a right to health that plays a role in decision-making, though not in decision-making about how to ration health care? Hassoun offers a way of doing this according to which the right to health “highlights the significance of improving health and gives us reason to address the underlying moral, as well as technical, problems that present obstacles [to allocation].”14 So, we might challenge the soundness of this kind of argument by placing pressure on the connection between rationing and rights, for perhaps the right to health is a moral reason to pursue certain kinds of policies, though not an explicit part of the rationing decision. As Hassoun notes, our moral reasons for promoting the health of the population may drive decisions about budgeting. Rationing presupposes maximizing an allocation given a particular budget constraint, but increasing the budget available is morally important, too, and the right to health may play a role in an argument

supporting budget expansion. This suggests that where public health is concerned, the right to health might play a role in rationing indirectly by setting budget constraints that influence rationing decisions. Promoting the aims of public health would certainly involve considering the number of resources invested in public health aims. It seems plausible, for example, that a right to health could fuel an argument for increasing or introducing funds needed to buy masks and vaccines needed to fight the Covid-19 pandemic. Hassoun’s view suggests that rights are not present merely to play a direct role in rationing decisions but also for the sake of highlighting those morally important dimensions of people’s lives that deserve greater investment of resources. For example, vaccines and masks promote public health, and the right to health could serve as a premise in an argument for increasing the supply of both when they are otherwise scarce. A bald appeal to rationing does not require any consideration about the budget constraint against which rationing decisions are made but takes the budget as given. Thus, it is at least plausible that a right to health can be preserved in the face of challenges from rationing, particularly if we allow that rights have more roles to play than as guides to allocation and rationing. However, it is unclear what it means for a right to “highlight” something, and some ways of modeling how this might work do not seem to require positing a right to health. For example, G. A. Cohen posits that there is an important distinction between what a state ought to do and which social states of affairs ought to be brought about.15 Perhaps philosophers like Hassoun have something like this distinction in mind—the moral right to health is a part those social states ought to be brought about. That is, it ought to be the case that everyone should have that right satisfied. So, if a course of action is available that allows for a closer realization to this state of affairs, then we should pursue that course of action. From the standpoint of public health, this may mean increasing the budget available. If so, then the moral right to health “highlights” what we should attempt to realize in social states of affairs in the actual world and may guide or prime decision-makers to consider, given

the space of available moral reasons, whether and what the state can do to realize those states of affairs as much as possible. This would be done chiefly by taking stock of the social states of affairs where the moral right to health care is satisfied and comparing them with non-ideal circumstances that the state may choose between. While this offers a plausible unpacking of what one might intend by a right’s ability to “highlight” the significance of health, it is unclear that rights are necessary for highlighting. Perhaps they are under modern conventions for the design of legal documents constraining the behavior of states—but then the question is not one about which social states of affairs we should realize and instead a question of what states ought to do to best realize those states of affairs. The state ought, perhaps, to implement a right to health for individuals so that they may have a way of making claims when those rights are violated, or so that the state can be moved by considerations other than efficient allocation of health services. But it is unclear that describing socially desirable states of affairs requires a right to health. Consider that the relevantly desirable social state of affairs is not necessarily one where everyone has their right to health satisfied. Instead, the relevant state of affairs seems to be one where people are healthy and can exercise capacities needed for pursuing a good life because they are healthy. It is unclear that any appeal to rights is needed in such a state of affairs or must serve any role in deriving it. Thus, either the moral right to health is not needed to understand which social states of affairs are desirable or it concerns only the applied question of how states ought to go about regulating their behavior. But even if we ignore these concerns about the role of rights in a theory of justice, it is unclear that it is true that we should posit a right to health that would serve the functions typical of a right, that is, allowing individuals to make claims against others. This may be because the scope of the state’s obligations about the health of the population does not extend to specific individuals. Consider the fundamental conditions approach again for context—perhaps one may deny that individuals can claim to have H ealth C a r e Ri g hts 

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a right to any of the conditions that promote the good life, but the state may be obligated to the general population to ensure the existence of the conditions that would promote health. Here again, Sreenivasan offers some insight into how such an argument may go. The core of the challenge concerns the status of health as a public good. According to this argument, if someone has a right to health, then that individual may make a claim to any of those circumstances (social or otherwise) that would promote their health. Health is a public good, and no individual may make claims against the state regarding public goods. Thus, no individual may make a claim against the state regarding health, and so there is no right to health. The upshot of this argument is that given the nature of the obligations of the state, no individual could use a right to health to claim that the state is obligated to them with respect to health matters. So, it seems, there is no right to health (insofar as rights require the existence of a claim). We may illustrate this using the example of herd immunity.16 Herd immunity is a public good. Public goods are by their nature available to everyone; they are non-rivalrous (consumption by one individual does not preclude another’s use), non-excludable (no one may be excluded from use so long as someone is allowed to use it), and indivisible (each person who uses it enjoys it equally). If herd immunity is a public good and promotes one’s health, then an individual citizen cannot make a claim on herd immunity. Sreenivasan justifies this premise in two ways. First, Sreenivasan argues that someone may make a claim on something if they have a measure of control over it, specifically whether individuals can waive the state’s obligation to provide them immunity. It seems they cannot. Second, he asks whether individuals can make claims to public goods based on the satisfaction of their interests and others. This would require that the interests of an individual making a claim are sufficient for justifying the state’s obligation to provide its population with herd immunity, something he finds implausible. The upshot of this is that if satisfying moral obligations related to health requires providing public goods, then there can be no right to health since 144 

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there are no claims individuals can make regarding public health. However, a significant concern with this argument is that it relies on an overly narrow conception of rights as enabling claims by individuals as individuals. An alternative view, one that would allow for claims on things like public goods, would allow that individuals make claims on what is of collective interest. Thus, that there are some rights that concern public goods that have their grounds in collective interests, understood as the aggregate interests of numerous individuals.17 Insofar as public health is a public good, then, it seems that the right to health could be grounded in aggregate interests in the conditions that promote health, and the right to public health, even if it is a public good, is not sufficient to defeat such rights. So far, we have seen that the dialectic about the right to health or health care is fraught with a number of concerns about the nature and scope of rights. The existence of rights might require a role in rationing decisions. But this conception of rights might block other roles rights can play that have an important role in public health decisions, for example, the decision to increase available funding for public health–promoting resources. So, the right to health might function as a reason in favor of increasing allocations, where possible. Nevertheless, one might wonder, as I have suggested, whether the moral right is necessary to make that case. Rather, that everyone (or as many people as possible) having access to health-promoting resources might be just because it provides certain goods equally. Rather, the language of rights might be more appropriate for characterizing what states ought to do and not which states of affairs are desirable.

DI S T R I B U T I V E J U S T I C E A N D T H E R I G H T TO A DE C E N T M I N I M U M O F H E A LT H C A R E Even without positing a right to health there are plausible alternative grounds for a right to health care. For one, there may be a cluster of other rights that ground

claims to health care. For example, James Nickel examines “linkage” arguments, according to which other rights for their full realization require health care. We have already seen one plausible example of a linkage argument in my discussion of Liao’s argument about the right to basic health. In that argument, the right to basic health is grounded in the right that people have to the fundamental conditions associated with the good life—that is, the full realization of the right to the fundamental conditions for the good life requires health, and so there is a right to health.18 But there are other prominent approaches that ground the right to health care in considerations of distributive justice. Consider Norman Daniels’ approach. The right to health care, in his view, reduces to a collection of other rights and claims people have. These include (lightly adapted from Daniels):19 1. Society has a duty to its members to allocate an adequate share of its total resources to healthrelated needs, such as the protection of the environment. 2. Society has the duty to provide a just allocation of different types of health services, considering the competing claims of different types of health needs. 3. Each person is entitled to a fair share of such services, where “fair share” includes answering the question: Who should pay for the services? This revisits the themes discussed earlier over the right to health—there is an explicit concern with rights being grounded in considerations of allocation. However, the point here is not to illustrate that there is no such thing as right to health, but instead to situate claims about health care rights within the space of theories of distributive justice. For individuals to have a right to health care, or particular health care services, means engaging with questions about allocation, the nature and scope of those allocations, and which allocations are feasible. This allows for a broadly Rawlsian picture of health care justice but, crucially, one that does not treat health as a primary good, or those all-purpose goods that serve people’s fundamental interests.

Daniels offers a view of health care justice in keeping with the Rawlsian conception of justice that treats health care as among the institutions that guarantee equality of opportunity.20 One may appreciate that this is similar in spirit to the kind of argument offered by Liao earlier—Liao’s central claim was that people have rights to those things that support living a minimally decent life. And, similarly, Daniels draws on a conception of health that he believes suits answering questions about what needs rather than preferences that might reflect expensive tastes. Specifically, he appeals to the conception of health as normal species functioning developed by Boorse, where disease is a deviation from normal species functioning, and where “normality” is defined statistically.21 The notion of normal species functioning buttresses what Daniels refers to as the “normal opportunity range” in a society or “the array of life-plans reasonable to pursue in a society.” Thus, insofar as promoting a healthy population promotes these opportunities, we require a right to health care that institutions are designed to protect. The specific right that is at issue is a right to a decent minimum of health care. The decent minimum of health care covers individuals with respect to those diseases and disabilities that an individual’s abilities and skills would ordinarily make available to them. The right to health extends no further, on Daniels’ view. This helps to exclude procedures that are seemingly only cosmetic and do not promote equality of opportunity. Two potential objections face this argument. First, consider the notion of a “normal opportunity range.” As Allen Buchanan has argued, given that the normal opportunity range is defined as the range of possible life plans, it is reasonable to pursue; it is left open precisely which constraints there are on reasonableness of a life plan.22 First, if life plans need to be reasonable for everyone, the list of life plans that the first premise ranges over will be extremely limited (those that sit at the overlap of life plans that everyone could pursue). Second, if the life plan only needs to be reasonable to someone, then we arrive at a much larger list that might strain our ability to practically distribute resources. What counts as a decent minimum of health care will vary significantly if we H ealth C a r e Ri g hts 

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understand the normal opportunity range in one way or the other. Second, the concept of “normal species functioning” may exclude support for certain life plans because it regards certain services as merely cosmetic that are controversial to treat as merely cosmetic. “Normal species functioning” may entail a range of biological regularities that are not necessarily a part of the life that many people find worth living. Insisting on, for example, “normal” reproductive habits as a part of normal species functioning would treat homosexuality as a pathology.23 If so, the argument may count medical treatments for homosexuality as a part of the decent basic minimum (assuming there are any effective “treatments”). This may entail the negative right that no one can stop or prevent others from having their homosexuality treated but may perhaps also the positive right that we have a duty to aid those who seek to have their homosexuality treated. These conclusions are objectionable and controversial, particularly given a range of psychological and medical concerns about the efficacy of such services. However, these conclusions only follow because normal species functioning is understood as functioning in line with species typical goals. A natural interpretation of “species typical goal” includes survival and reproduction, but deviation from the typical (or statistically normal) reproductive behavior of many human populations should not, in every case, count as pathology. Moreover, even amending Boorse’s and Daniels’ account so that pathologies are harmful deviations from normal species functioning may not address every concern.24 “Harm” may be understood as “unwanted” so that disease is an unwanted deviation from normal species functioning. But even this implies controversial conclusions about what kinds of health care services should be provided by society. Consider transgender people—people born with one set of sex characteristics and socialized as a particular gender (usually a man or woman) but who have a gender identity different from the one they were born or socialized with. For transgender people, some of their physical characteristics are (or may be) unwanted, though they are species typical. However, 146 

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it does not seem to follow from the fact that they have undesired but species typical characteristics that a just society should not provide for their medical needs. We need further argument to show that the medical needs of transgender people are not a part of the decent basic minimum. Thus, if we assume the modified Boorsean definition of health, the decent minimum may not include the medical needs of transgender people because their medical needs do not reflect the influence of pathology or disease. This modified Boorsean definition could plausibly rule out some life plans from the normal opportunity range by default, particularly given empirical claims about access to health care among marginalized groups. The argument just considered suggests that “health” in the decent basic minimum should include more than bodily health, where this means being free from diseases that influence the normal operation of one’s body parts. If this is all that promoting public health amounts to (promoting the basic biological functioning of individuals’ body parts), then there may be no reason to include a range of health services in the basic minimum associated with certain life plans. But this is precisely the question at issue: What do we include in our conception of health? And is there an adequate conception of health that supports the range of life plans we think a just society should promote? Finally, what is the range of life plans that a society should promote? These arguments raise questions that need settling and that delimit the boundaries of what it means to promote and protect public health.

A DE C E N T M I N I M U M WI T H O U T R I G H TS The final argument I will discuss and consider in this chapter denies the existence of the right to a decent minimum of health care but nevertheless posits that a collection of rights and moral principles yield a moral and legal claim to health care that has the force of a right—what Buchanan calls an “enforced principle” for a decent minimum of health care.25 This principle is drawn from a number of different sources:

1. Special rights: the moral requirement to rectify past injustice born from historical and institutional injustices that impact health, requirements of compensating those who have suffered unjust harm or who have been exposed to health risks unjustly, and requirements of compensation to those who have made exceptional sacrifices. 2. Prevention of harm: public health services have often been defended on the basis of the harms they help to prevent from people interacting with each other through the normal course of our lives (access to masks, vaccines, etc.). If people require equal protection from harm, then this would come closer to the universal right to health care. 3. Prudence: access to health care services provides significant benefits to the populations they are provided to—healthy people are better fit for defense, better fit for labor, and live lives that are more satisfying. 4. Enforced beneficence: we have a reason to benefit people through access to health care services, but rational considerations either undermine the existence of public goods like these, or we have no assurance that enough people will contribute. Thus, we require a legal enforcement of beneficence to guarantee access to health care. The four of these taken together support the legal entitlement to a decent minimum of health care. This argument does not require that we posit a positive right to health. The only appeals are to the existence of special rights, the prevention of harm, prudence, and the need for enforced beneficence. Thus, even a libertarian or a philosopher who denies the existence of positive rights may accept this argument. Nevertheless, one might worry that this “hodgepodge” of principles appears ad hoc—Daniels makes this point, though he does not elaborate on it.26 One way of articulating this point is to note the example of transgender people earlier mentioned. The right that transgender people have to their specific medical services within the decent minimum could be justified by drawing on special rights to compensation that those who are the subject of institutional or structural injustice are owed. As a result, this account

avoids a metaphysical view of health that excludes certain groups from having their needs met by the basic minimum and accounts for obligations we have to those groups. However, it seems to do this only by drawing on the incidental features of the social status of marginalized groups. Were there no systemic or structural injustice imposed on marginalized groups, their particular entitlements might disappear, too. This makes it appear that some groups only have health care rights once we consider special pleading for their being entitled to health care services. On the other hand, views like Daniels’ rely on facts about health, what it is, and how it promotes the existence of a range of (reasonable) life plans. No special pleading is needed to justify why it is that some group may have access to certain kinds of health services. The only details that need to be resolved on this account are the relevant metaphysical details about the nature of health and the range of life plans supported by that particular conception of health.

CO N C LU S I O N This chapter surveyed a variety of arguments for and against the existence of a right to health care. All of the arguments for the existence of a right to health care seem to have powerful considerations challenging their soundness, and this is reflected in the state of the debate. These objections converge on some of the crucial and fundamental assumptions about the nature of rights, as well as questions and concerns about the nature of health. The surveyed arguments focus specifically on the source of a right to health care rather than the consequence of positing such a right. There are a number of concerns worth exploring about whether positing a right to health care would be the best means of addressing our moral interests in health. For one, it may be a way of restraining market mechanisms involved in the distribution of health services. Systems of health insurance like those in the United States can challenge the lives of the least well-off, raising questions about the moral properties of those H ealth C a r e Ri g hts 

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markets—perhaps it would be reasonable to treat such markets as sufficiently noxious that they should be regulated, perhaps because private markets for health care or health insurance frustrate attempts to provide equal access to health care.27 Further, it might be important to understand the role of rights in how health care should be rationed and how specific health services should be prioritized. The arguments I surveyed here bear on this question, but I only focused on those questions as much as was needed to motivate the reasoning for or against the existence of a right to health care.

N OTE S 1.  Gopal Sreenivasan and Allen Buchanan, “Taking International Rights Seriously,” in Human Rights: Moral or Political? ed. Adam Etinson (New York: Oxford University Press, 2018), 211–29; Jonathan Wolff, “The Human Right to Health,” Aristotelian Society: Supplementary 86 (2012): 217–37. 2.  Gopal Sreenivasan, “Health Care and Human Rights: Against the Split Duty Gambit,” Theoretical Medicine and Bioethics 37 (2016): 343–64. 3. Charles Fried, “Rights and Health Care—Beyond Equity and Efficiency,” New England Journal of Medicine 293 (1975): 241–45; Charles Fried, “Equality and Rights in Medical Care,” Hastings Center Report 6 (1976): 29–34. 4.  Gopal Sreenivasan, “Human Right to Health? Some Inconclusive Skepticism,” Aristotelian Society: Supplementary 86 (2012): 239–65. 5.  Sreenivasan, “Health Care and Human Rights.” 6.  Matthew Liao, “Health (Care) and Human Rights: A Fundamental Conditions Approach,” Theoretical Medicine and Bioethics 37 (2016): 259–74. 7.  Liao, “Health (Care) and Human Rights,” 263. 8. Nicole Hassoun, “The Human Right to Health: A Defense,” Journal of Social Philosophy 51 (2020): 158–79; Nicole Hassoun, “The Human Right to Health,” Philosophy Compass 10 (2015): 275–83. 9. Norman Daniels, Just Health: Meeting Health Needs Fairly (New York: Cambridge University Press, 2008). 10. Daniels, Just Health, 313–14.

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11.  Sarah Conly, “The Right to Preventive Health Care,” Theoretical Medicine and Bioethics 37 (2016): 307–21. 12.  Sreenivasan, “Human Right to Health?,” 247. 13.  Gopal Sreenivasan, “Why Justice Requires Rationing in Health Care,” in Medicine and Social Justice: Essays on the Distribution of Health Care, eds. Rosamond Rhodes, Margaret Battin, and Anita Silvers (New York: Oxford University Press, 2012), 143–54. 14.  Hassoun, “The Human Right to Health,” 161–62. 15.  G. A. Cohen, “How to Do Political Philosophy,” in On the Currency of Egalitarian Justice and Other Essays in Political Philosophy, ed. Michael Otsuka (Princeton, NJ: Princeton University Press, 2011), 225–35. 16.  Sreenivasan, “Human Right to Health?” 17.  Hassoun, “The Human Right to Health.” 18.  James Nickel, “Can a Right to Healthcare Be Justified by Linkage Arguments?,” Theoretical Medicine and Bioethics 37 (2016): 293–306. 19.  Norman Daniels, Just Health Care (New York: Cambridge University Press, 1985). 20.  John Rawls, A Theory of Justice, revised edition (Cambridge: Harvard University Press, 1971); John Rawls, Justice as Fairness: A Restatement (Cambridge: Harvard University Press, 2001). 21.  Charles Boorse, “Health as a Theoretical Concept,” Philosophy of Science 44 (1977): 542–73. 22.  Allen Buchanan, “The Right to a Decent Minimum of Health Care,” Philosophy and Public Affairs 13 (1984): 55–78. 23.  Liao, “Health (Care) and Human Rights.” 24.  Daniels, “Just Health Care,” 38; Jerome Wakefield, “The Concept of Mental Disorder: On the Boundary between Biological Facts and Social Values,” American Psychologist 47 (1992): 373–88; Jerome Wakefield, “When Is Development Disordered? Developmental Psychopathology and the Harmful Dysfunction Analysis of Mental Disorder,” Development and Psychopathology 9 (1997): 269–90. 25. Buchanan, “The Right to a Decent Minimum of Health Care.” 26.  Norman Daniels, “Fair Equality of Opportunity and Decent Minimums: A Reply to Buchanan,” Philosophy and Public Affairs 14 (1985): 106–10. 27. Dan Brock and Allen Buchanan, “Ethical Issues in For Profit Healthcare,” in Justice and Health Care (New York: Oxford University Press); Daniel Hausman, Valuing Health: Well-Being, Freedom, and Suffering (New York: Oxford University Press, 2015); Debra Satz, Why Some Things Should Not Be for Sale (New York: Oxford University Press, 2009).

CHAPTER 14

Vulnerability Costanza Porro

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he concept of vulnerability has become extremely popular in a variety of fields over the past decades. In bioethics, and especially research ethics, it is routinely used to describe individuals who are vulnerable to harms incurred through participation in research.1 In health care, physical, emotional, and also cognitive vulnerability are ubiquitous, and recently there have been various attempts to elaborate a concept of vulnerability suitable for these settings.2 In the field of law and legal studies, vulnerability has played an important role in the rethinking of the person as a subject of the law as well as in specific branches of the law, such as migration law and criminal law.3 Finally, the concept of vulnerability has also seen a recent renaissance in philosophy. Feminist theorists and political philosophers have argued that vulnerability provides a significant contribution in revising the traditional conception of the person characterized by self-sufficiency and independency as well as the traditional

understanding of the duties of the state toward its citizens.4 Further, it provides a novel and distinctive perspective from which to reflect on a variety of problems in moral and political philosophy, such as the nature of autonomy and the treatment of children.5 The growing popularity of vulnerability has brought increased attention to a variety of debates around how to understand it, its uses, and its implications. This chapter will focus on the literature in philosophy and bioethics and will explore four main questions, which are at the center of the discussion on vulnerability. The first is that of how to define vulnerability. The second is whether vulnerability is necessarily bad. The third question addresses the problem of the obligations arising from vulnerability and how they should be allocated. The fourth is the question of whether vulnerability is at all a helpful normative concept and what is that it is supposed to capture that is distinct from other concepts, first and foremost that of harm.

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W HAT IS VULNE R A B I L I T Y? The first problem to be addressed when reflecting on the concept of vulnerability is providing a definition of vulnerability. As a starting point, we can define vulnerability as a condition in which one’s important interests are under the threat of harm. This preliminary definition leaves open a number of questions and issues that have been the object of various debates. One of these issues concerns a core tension within the concept of vulnerability: while all human beings are vulnerable, not all are vulnerable to the same extent and in the same ways. The particular circumstances of individuals influence their level of vulnerability so that some are more vulnerable than others. Factors such as one’s gender, race, sexuality, level of abilities, age, socio-economic condition, geographical location and physical and mental health, among others, play a significant role in shaping the extent and the ways in which one is vulnerable. These factors intersect in a variety of ways and create kinds of vulnerability that are specific to the situations of particular individuals and groups. Just to give an example, being a middle-class heterosexual woman in Italy comes with different levels and kinds of vulnerabilities from being a poor queer woman in Hungary. The tension between universal and special vulnerability has been often discussed in bioethics.6 In research ethics, an example of special vulnerability is the one captured by the labeling approach, which identifies certain groups as vulnerable because of their potentially limited capacity to give consent. This approach has been criticized for being too narrow because it mainly focuses on the ability to give consent, rather than the broader risks involved in research participation. Further, it has been regarded as unduly paternalistic in recommending the exclusion of those unable to give consent without appreciating the negative consequences on the health of these individuals arising from their exclusion from research. The idea of understanding vulnerability through the lens of the idea of particularly vulnerable individuals and groups has also been criticized due to the essentialization and the potential stigmatization arising from this label for those who end up 150 

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being regarded as essentially, and often exclusively, vulnerable. Nonetheless, the alternative strategy of applying the concept of vulnerability in a more generous way to all participants has also come under attack as this blanket approach does not provide the tools to address specific vulnerabilities in research. This debate reflects the broader tension between two sides of vulnerability, the particular and the general, the circumstantial and the universal. In philosophy the debate between those who attempt to provide an account of vulnerability reflects this tension. On the one hand, some theorists understand vulnerability as universal, that is, an ontological condition inherent to our humanity.7 This is due to our embodiment and the inherent fragility of our bodies, which are always exposed to the risk of harm, illness, and disability. We are constantly subject to the possibility of wounding and suffering. Further, we are inherently social beings, whose sense of self and self-respect is dependent on the relationships with others, and vulnerable to their misrecognition, abuse and neglect. On the other hand, philosophers who stress the circumstantial aspect of vulnerability understand this notion in a different way from that discussed earlier. They stress the relational aspect of vulnerability—the ways in which particular individuals and groups are susceptible to harm and threats from specific others in light of existing relationships.8 In Goodin’s words, “Vulnerability implies that there is some agent (actual or metaphorical) capable of exercising some effective choice over whether not to cause or to avert the threatened harm.”9 In this sense, one is always vulnerable to particular agents in connection to particular harms to their core interests. Vulnerability so conceived is both circumstantial and relational. These different accounts of vulnerability stress either the universal or the circumstantial aspects of vulnerability. The question that arises is whether it is possible to provide an account of vulnerability that captures both our common vulnerability and the special vulnerability of particular individuals and groups. One attempt in such a direction has been proposed by Catriona Mackenzie, Wendy Rogers, and Susan Dodds.10 They argue that instead of

looking for a unified definition of vulnerability that attempts to capture its two sides, it is more promising to propose a taxonomy of different kinds of vulnerability. In this way, vulnerability can be accounted in its many dimensions, and especially as both universal and special vulnerability. MacKenzie, Rogers, and Dodds put forward a taxonomy of different sources of vulnerability, distinguishing between inherent, situational, and pathogenic vulnerability. First, the category of inherent vulnerability captures the vulnerability inherent in our human condition as a result of intrinsic properties, such as our embodiment and our nature as social beings. While some of these vulnerabilities are constant, others depend on a variety of factors, such as age, health status, and disability. Many of these vulnerabilities are unchangeable features of our lives as human beings. Second, situational vulnerability is context-specific and is caused or exacerbated by social, political, economic, and environmental factors. This kind of vulnerability might be long-lasting or episodic. Pathogenic vulnerabilities are a subset of situational vulnerabilities, which are objectionable and arise from abuse in interpersonal relationships, or social domination, oppression, and political violence. While the different sources of vulnerability are often interconnected, in many cases it is possible to distinguish between them. To give an example, a person who is vulnerable due to her old age experiences a kind of inherent vulnerability, however, when this is combined with poverty or a lack of adequate state support, we enter the realm of situational vulnerability, some of which might be pathogenic vulnerabilities, such as relationships of abuse with her carers that might result from her vulnerable situation. Some have argued that providing a taxonomy of different kinds of vulnerability falls short of achieving the aim that theorists of vulnerability should set themselves, namely providing a unified concept of vulnerability, a definition that captures its different dimensions. To achieve this objective, a solution that has been advanced is to think of vulnerability as a disposition, the disposition to be harmed in particular circumstances.11 While this disposition is shared by all human beings, it is not manifest for all of us to

the same extent and in the same way at all times. Specific circumstances render this disposition more or less likely to manifest itself. In this way, proponents of the dispositional account argue, vulnerability is understood as both universal and circumstantial. The first issue to be raised in this connection, which has been the object of a debate between the advocates of the disposition approach, is whether this disposition is to be conceived as an intrinsic or extrinsic disposition. An intrinsic disposition is something that an object has in virtue of the way it is, while an extrinsic disposition, like all extrinsic properties, is a property of an object that exists in virtue of a particular relationship between the object and the world. Whether we think of vulnerability as a disposition in extrinsic or intrinsic terms has a significant bearing on its nature. Proponents of the extrinsic disposition approach argue that vulnerability cannot be regarded as an intrinsic disposition because whether one is vulnerable in particular ways depends on its relationship with other beings and entities. For instance, some of the vulnerabilities experienced by women are not the product of their intrinsic properties but of their living in a patriarchal society. On the other side, it has been pointed out that the extrinsic disposition approach is unable to capture the universal side of vulnerability as it reduces all kinds of vulnerability to situational ones, as vulnerability only manifests itself in specific circumstances.12 If that is true, it fails to capture one of the two sides of vulnerability, thereby failing to keep one of the promises of the disposition approach. Finally, proponents of the taxonomy approach argue that its advantage over the dispositional account is the ability to provide a more fine-grained analysis of vulnerability which, as I discuss in the section “How Should the Duties Arising from Vulnerability Be Understood and Allocated?,” is helpful in reflecting on how to understand the duties arising from vulnerability. The debate on how to define the concept of vulnerability remains open, and the main difficulty lies in providing a unified concept of vulnerability while capturing both its universal and circumstantial side. The alternative on the table is to abandon such attempts and opt for a taxonomy of vulnerability. V u lne r ability 

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IS VULNE R AB I L I T Y N ECE SSARILY BA D? Vulnerability is often regarded as an inherently bad state of affairs. This is true for the universal vulnerability that we all experience and even more so for the special and heightened vulnerability of particular groups and individuals arising from their specific circumstances. First, vulnerability is problematic due to its connection to the risk of harms to important interests, as these harms are in themselves bad. Second, certain kinds of vulnerability are problematic in themselves, and not just derivatively due to their connection to harm. As discussed by Christine Straehle, certain kinds of vulnerability are problematic due to their impact on our autonomy and self-respect.13 This is because being vulnerable often has negative effects on one’s capacity to act autonomously and choose according to one’s values and norms. A paradigmatic example of this is that of an abusive relationship in which the abused party chooses in accordance to what they take to be the desires of the other party to avoid the harm that would befall them otherwise. Such situations not only prevent one from acting autonomously but tend to erode one’s self-respect and ability to regard oneself as an autonomous agent. In light of these remarks, one might come to the conclusion that vulnerability is necessarily and always bad. However, as many theorists of vulnerability have argued, vulnerability is neither necessarily nor exclusively problematic. First, vulnerability is a pervasive and inescapable aspect of the human condition, a feature of our lives in itself morally unproblematic.14 Often what makes particular types of inherent vulnerabilities objectionable is not their existence but the social response, or lack of response, to them. As Goodin argues, no vulnerability is wholly natural, but they are all created, shaped, or sustained, at least in part, by existing social arrangements.15 Second, when thinking about vulnerability in the context of relationships between people, it is important to note that vulnerability is problematic only in those relational circumstances in which one party is significantly more vulnerable or dependent on the other.16 In such situations, the other party typically 152 

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has sole control over meeting some of their basic needs and can exercise such control arbitrarily; the cost of exit from the relationships is much higher for the vulnerable party. Vulnerability in the context of relationships is not objectionable under conditions of interdependence, in which both parties are vulnerable to each other to a similar extent. Further, in recent years it has been argued that vulnerability can also have a positive value. Vulnerability is regarded by some theorists as constitutive of autonomy understood in relational terms because part of what it means to be autonomous agents is to be vulnerable to others in the development and exercise of this capacity.17 First, Carla Bagnoli argues that we cannot understand practical reasoning without taking into consideration the fact of inherent vulnerability, as vulnerability is a constitutive constraint on practical reasoning.18 Moreover, it has been argued that certain types of vulnerability, like the ones experienced in loving relationships, romantic or otherwise, can be valuable because they are a precondition for entering these relationships.19 There is a necessary link between love and vulnerability not only because upon entering a love relationship one becomes exposed to a significant higher risk of harm from another person but also because being vulnerable and accepting this vulnerability is to a large extent what it means to be in such relationships. A significant example of this is the central role that the loved one acquires in shaping one’s own sense of self. While in some cases vulnerability in love relationships is indeed morally problematic, vulnerability is constitutive of all love relationships, including valuable ones. Second, Straehle argues that there is a particular kind of vulnerability in the context of love relationships that she calls self-constituting vulnerability, which has value.20 She defends a volitional account of love and argues that to love is to adopt a self-chosen principle, which involves a disinterested concern for the existence of those whom we love and what is good for them. Such a principle gives us reasons to act, shapes our choices and actions, and allows us to define ourselves in a particular way. In this way the vulnerability that comes with love, rather than being harmful, can help us to

realize ourselves in the world thereby actualizing our nature of autonomous agents. In light of these remarks, we can conclude that vulnerability is neither inherently nor necessarily bad. While some kinds of vulnerability are indeed problematic in themselves and in virtue of their connection with harms to important interests, only particular kinds of vulnerability in specific types of relationships are problematic; further, vulnerability can be indeed valuable.

H OW SHOULD T H E D U T I E S AR ISING FRO M V U L NE R A B I L I T Y B E UN DE RSTOO D A ND A L LO C AT E D? Having discussed the nature and the normative status of vulnerability, it is important to look at the problem of the duties arising from vulnerability. There are three main questions that I will address in this connection. The first is who are the bearers of these duties, the second is which kinds of vulnerability generate duties, and the third is how these vulnerabilities should be addressed. In the discussion of who has the duties to respond to vulnerability, a very influential position is the one advanced by Goodin, who adopts a consequentialist approach to this question.21 In his view, what matters is not who is historically responsible for the arising of vulnerabilities but rather who can achieve the best results in responding to them. He argues that the responsibility to address vulnerability lies in the hands of those who are in the best position to address such vulnerabilities. Those who are equipped best to address vulnerability are typically those to whom people are especially vulnerable. These include people who are in positions of power and authority—such people therefore have special duties toward those who are vulnerable to them. The state is a primary example of this, and in Goodin’s view, it has extensive obligations in virtue of its unique power over its citizens. In response to Goodin’s account, various philosophers, especially in the feminist tradition, have argued that disregarding the history of how one becomes the

person to whom someone else is uniquely vulnerable is problematic.22 This is because the way vulnerabilities are structured itself depends on social practices, including objectionable ones. If we apply Goodin’s principle to all cases, we run the risk of reifying allocations of duties that are themselves objectionable. An obvious example of this is the duties that women in the family would be assigned, which reflect the current unjust allocation of care-related responsibilities that render children uniquely vulnerable to their mothers or other female members of their family. Another interesting case discussed by Kittay is that of relationships of vulnerability in the context of exploitative domestic labor relationships in which the employer becomes extremely vulnerable to the action of their employee. Goodin’s principle, if applied, would lead us to conclude that exploited employees have a moral responsibility to meet the needs of their employers.23 This is even more worrying in virtue of the fact that, as famously pointed out by Kittay, carers themselves can develop problematic vulnerabilities in virtue of their roles.24 Examples of this include the vulnerability to their partners of women who have caring responsibilities but do not have the financial resources to support themselves and their children, as well as the vulnerability of migrant care workers who provide care to people in the global north, the majority of which are again women. In light of this, in attributing the duties arising from vulnerability, it seems appropriate to abandon an exclusively consequentialist principle that disregards the origin of such relationships of vulnerability. To answer the second question on which kinds of vulnerabilities generate duties, it is helpful to draw on our earlier discussion on the taxonomy of vulnerability and its normative status. While, as discussed earlier, our inherent vulnerability is a fact of our nature that is not in itself problematic, it can be transformed into objectionable types of vulnerability in the context of particular kinds of relationships, or if left unaddressed by state policy. This generates particular duties on behalf of the state and other agents to respond to it. For instance, the fact that we are all vulnerable to illness and disability is a reason for the state to set up a universal health care system. V u lne r ability 

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Situational vulnerabilities of specific individuals and groups, which arise from their particular situation and often manifest themselves also as a heightened level of vulnerability, are also the source of duties. Among such vulnerabilities, particularly important are those pathogenic vulnerabilities, which are the result of existing inequalities and injustices, such as the heightened vulnerability to the ill health of those economically and socially disadvantaged, that could be addressed through state policy by removing its root causes. Finally, those vulnerabilities that undermine self-respect and autonomy discussed earlier are also the source of duties for the state and other agents. The third question to be addressed in this connection is about the ways in which these vulnerabilities should be responded to. The issue of which duties arise from vulnerabilities and how these duties should be discharged is a complicated and context-dependent issue that cannot be fully explored here, however, a few remarks can be made in this connection. First, a core problem is the relationship between vulnerability and autonomy. As mentioned earlier, the use of the label “vulnerable” as well as the ways in which vulnerabilities are addressed often result in disregarding the autonomy of the vulnerable by regarding them and treating them as exclusively and essentially victims in need of protection. Further, theorists of vulnerability themselves sometimes adopt a critical stance toward autonomy.25 While being directed primarily at the libertarian conception of autonomy, which is rightly considered misguided and the source of many problematic implications, rather than at autonomy itself, this stance can support the impression that vulnerability and autonomy are ideas in tension with each other.26 In recent years, many theorists have opposed this view, arguing first that, as mentioned earlier, a correct conception of autonomy captures our vulnerability by understanding autonomy in relational terms. Second, an essential part of what it is to appropriately respond to vulnerability is promoting the agency of those who experience such vulnerability to counter the sense of powerlessness that is sometimes associated with it. Further, putting autonomy at the center when addressing vulnerability allows us to resist the risk of paternalism. 154 

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The second point to be made concerning the ways in which vulnerability should be responded to is related to the idea that misguided responses to vulnerability can themselves be the sources of problematic kinds of vulnerability. This is often caused by the neglect of the state, such as in the case of the lack of care available to people with mental illness, as well as physical and cognitive disabilities, who were deinstitutionalized in the 1980s in Australia, as discussed by Dodds.27 In this case, the lack of appropriate community-based care exacerbated the situational vulnerability they experienced. However, in other cases it is not inaction but rather misguided intervention that has such an effect. One such example is the public policy response to the problem of sexual abuse of children in remote Aboriginal communities in Australia, discussed by Rogers, Mackenzie, and Dodds.28 A failure to recognize the effects of colonization and systemic disadvantage, the lack of engagement with local communities, and the kinds of interventions enacted all contributed to an increase of pathogenic vulnerability for these communities. In conclusion, both the respect of the autonomy of vulnerable individuals and the attention to the ways in which the attempt to address vulnerability might generate new vulnerabilities or exacerbate existing ones, should play a core role in the response to vulnerability.

I S V U L N E R A B I L I T Y A H E L P FU L N O R MAT I V E CO N C E P T? The final question to be addressed is whether vulnerability is in itself a helpful normative concept. Partly due to the lack of clarity around a definition of vulnerability discussed in the section, “What Is Vulnerability?,” many have expressed skepticism about its usefulness. For instance, Wrigley argues that focusing on vulnerability does not have any substantial ethical weight that is not already captured by other concepts.29 First, the concept of harm, or the risk of harm, is regarded by him as the normative core of vulnerability-related concerns. Second, for Wrigley, in the context of bioethics, it is the concept of consent,

rather than vulnerability, that does the normative work. He argues that the concept of vulnerability can still play a pragmatic role in flagging situations that are of normative concern, cases that should worry us, however, it does not by itself have any further normative role to play. In response to these remarks, we can point to our earlier discussion in the section “Is Vulnerability Necessarily Bad?” There I identified some of the normatively distinctive roles that vulnerability can play. First, there is the condition of powerlessness and the erosion of self-respect and agency, which is unique to certain kinds of vulnerability.30 Second, I have discussed the unique value that vulnerability can have in the context of relationships of love and care, and in connection to autonomy.31 The second issue to be addressed in this connection is the relationship between vulnerability and dependency. As mentioned earlier, the concept of vulnerability has played an important role in the revision of the conception of the person traditionally prevalent in political philosophy. The criticism of the model of the person as self-sufficient and a fully cooperating adult member of society—and the corresponding understanding of justice—has been accompanied by the proposal of an alternative model. In the debate on how to formulate this new conception of the person, two main concepts have emerged, that of vulnerability and that of dependency. The issue at stake is which concept is better suited both in its use in critiquing the traditional model and as the building block for an alternative proposal. While vulnerability refers to situations in which one is exposed to the risk of harm and, in its relational version, risk of harm from a particular other agent, dependency captures cases when one relies on the support and care of particular others. For some, focusing on dependency, and especially situations of radical dependency, in which one person depends on another for the satisfaction of all their basic needs, has the advantage of proposing the most radical challenge to the traditional concept of the person. Further, it also captures those cases traditionally understood as marginal and often excluded by the domain of justice, such as babies, young children, and people living with severe disabilities, who are part of relationships of radical

dependency.32 Theorists of vulnerability, on the other hand, argue that the concept of vulnerability has the advantage of being much more capacious. First, vulnerability is a universal condition that all agents experience not only at particular stages, such as infancy or old age, but over the course of their entire lives. Second, unlike dependency, vulnerability does not only occur in intimate settings and in contexts in which hands-on care is practiced but in many different kinds of relationships and circumstances.33 For this reason, it is also not so easily dismissed as the concept of dependency, as an episodic and marginal aspect of the human condition. In light of this, it is better suited to serve as the basis of an alternative model of the person for the purpose of elaborating a theory of justice.

CO N C LU S I O N The purpose of this chapter has been that of providing an overview of the main debates around the concept of vulnerability, its definition, uses, and implications. While the inquiry on vulnerability, especially in political philosophy, remains in its initial stages, the concept of vulnerability has been attracting growing interest in the past decades and constitutes an interesting and novel perspective on a variety of problems in philosophy and bioethics. Further reflection on its nature and on the role it can play in our theorizing about the conditions for a just society and the duties that the state owes its citizens and citizens owe each other will unlock its full potential.

N OT E S 1. Wendy Rogers, Catriona MacKenzie, and Susan Dodds, “Why Bioethics Needs a Concept of Vulnerability,” International Journal of Feminist Approaches to Bioethics 5, no. 2 (2012): 11–30. 2.  Joachim Boldt, “The Concept of Vulnerability in Medical Ethics and Philosophy,” Philosophy, Ethics, and Humanities in Medicine 14, no. 1 (2019): 6–24. 3.  Martha Fineman, “The Vulnerable Subject: Anchoring Equality in the Human Condition,” Yale Journal of Law & Feminism 20, no. 1 (2008): 8–40. V u lne r ability 

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4.  Robert E. Goodin, Protecting the Vulnerable: A Reanalysis of Our Social Responsibilities (Chicago: University of Chicago Press, 1985); Martha Nussbaum, Frontiers of Justice: Disability, Nationality, Species Membership (Cambridge, MA; London: The Belknap Press of Harvard University Press, 2007). 5.  Catriona Mackenzie, ed., Vulnerability: New Essays in Ethics and Feminist Philosophy, Studies in Feminist Philosophy (New York: Oxford University Press, 2014). 6. Rogers, MacKenzie, and Dodds, “Why Bioethics Needs a Concept of Vulnerability.” 7.  Judith Butler, Precarious Life: The Powers of Mourning and Violence (London; New York: Verso, 2006); Fineman, “The Vulnerable Subject.” 8.  Goodin, Protecting the Vulnerable; Christine Straehle, “Vulnerability, Autonomy and Self-Respect,” in Vulnerability, Autonomy, and Applied Ethics, ed. Christine Straehle (New York: Routledge, 2017). 9.  Goodin, Protecting the Vulnerable, 112. 10. Rogers, MacKenzie, and Dodds, “Why Bioethics Needs a Concept of Vulnerability.” 11. Frédérick Armstrong, “An Extrinsic Dispositional Account of Vulnerability,” The Ethics Forum—Les Ateliers de l’éthique 12, no. 2–3 (2017); Angela K. Martin, Nicolas Tavaglione, and Samia Hurst, “Resolving the Conflict: Clarifying ‘Vulnerability’ in Health Care Ethics,” Kennedy Institute of Ethics Journal 24, no. 1 (2014): 51–72. 12. Catriona MacKenzie, “Vulnerability, Needs and Moral Obligation,” in Vulnerability, Autonomy, and Applied Ethics, ed. Christine Straehle (New York: Routledge, 2017). 13.  Straehle, “Vulnerability, Autonomy and Self-Respect.” 14.  Fineman, “The Vulnerable Subject.” 15.  Goodin, Protecting the Vulnerable. 16.  Goodin, Protecting the Vulnerable. 17.  Catriona Mackenzie, “The Importance of Relational Autonomy and Capabilities for an Ethics of Vulnerability,”

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in Vulnerability, eds. Catriona Mackenzie, Wendy Rogers, and Susan Dodds (New York: Oxford University Press, 2014), 33–59. 18.  Carla Bagnoli, “Vulnerability and the Incompleteness of Practical Reason,” in Vulnerability, Autonomy, and Applied Ethics, ed. Christine Straehle (New York: Routledge, 2017). 19.  Straehle, “Vulnerability, Autonomy and Self-Respect.” 20.  Straehle, “Vulnerability, Autonomy and Self-Respect.” 21.  Goodin, Protecting the Vulnerable. 22. Eva Feder Kittay, Love’s Labor: Essays on Women, Equality, and Dependency, Thinking Gender (New York: Routledge, 1999). 23. Kittay, Love’s Labor. 24. Kittay, Love’s Labor. 25.  Fineman, “The Vulnerable Subject.” 26. Mackenzie, “The Importance of Relational Autonomy and Capabilities for an Ethics of Vulnerability.” 27. Susan Dodds, “Dependence, Care, and Vulnerability,” in Vulnerability, eds. Catriona MacKenzie, Wendy Rogers, and Susan Dodds (New York: Oxford University Press, 2013). 28. Rogers, MacKenzie, and Dodds, “Why Bioethics Needs a Concept of Vulnerability.” 29. Anthony Wrigley, “An Eliminativist Approach to Vulnerability,” Bioethics 29, no. 7 (2015): 478–87. 30.  Straehle, “Vulnerability, Autonomy and Self-Respect.” 31. Bagnoli, “Vulnerability and the Incompleteness of Practical Reason”; Mackenzie, “The Importance of Relational Autonomy and Capabilities for an Ethics of Vulnerability”; Straehle, “Vulnerability, Autonomy and Self-Respect.” 32. Kittay, Love’s Labor. 33.  Dodds, “Dependence, Care, and Vulnerability”; Shiloh Y. Whitney, “Dependency Relations: Corporeal Vulnerability and Norms of Personhood in Hobbes and Kittay,” Hypatia 26, no. 3 (2011): 554–74.

CHAPTER 15

Nudging in Public Health Paul Hamilton

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he choices individuals make can be predictably influenced by seemingly irrelevant factors such as which options are the default options, what order options appear in, and how options are framed. Some, such as Richard Thaler and Cass Sunstein, have suggested that these irrelevant factors should be intentionally designed to influence choosers into making welfare-promoting choices. That is, choosers should be nudged into making better choices. It is understandable that those interested in public health policy would be interested in nudging. After all, the subtitle of Thaler and Sunstein’s Nudge: Improving Decisions about Health, Wealth, and Happiness promises that nudges may have some potential to impact health. Further, among the accomplishments that have been credited to what is popularly known as the United Kingdom’s “Nudge Unit” is “helping smokers give up tobacco,”1 which, from a public health perspective, is a desirable outcome. However, this chapter will argue that the assumptions and motivations for using nudges stand in tension with the assumptions and goals associated with advancing public health. For someone interested in nudges because he or she shares the assumptions and goals that uniquely motivate their use, there is little justification for being concerned with advancing public health outcomes over other types of welfare promotion. For someone interested in advancing public

health but who does not share the assumptions about human decision-making that uniquely motivates the use of nudges, there is little reason to be interested in nudge interventions beyond their capacity to produce desirable outcomes. That is, there is little motivation to restrict oneself to using nudges qua nudges. In what follows I describe the assumptions about human decision-making that motivate the use of nudges. I then present the traditional definitions of nudge, some shortcomings of these definitions, and then stipulate a definition. Next I turn to public health, but rather than put forward a particular conception of public health, I identify certain types of assumptions made when putting forward any view of public health. Finally, I describe two ways of relating nudging and public health, which I characterize as a nudge-first approach and a public health–first approach. These two approaches help to demonstrate the tension I described.

BAC KG R O U N D A S S U M P T I O N S O F N U DG E A DVO C AT E S Before laying out what a nudge is, I will explain some of the assumptions that motivate their use and distinguish nudges from alternative interventions. These assumptions are that the heuristics and biases research program correctly describes human decision 157

making, individuals should make decisions in line with those that they would make if they were the perfectly rational utility maximizers often used in economic models, and the cognitive limitations of choosers should be leveraged to guide (but not force) choosers into making decisions that improve their individual welfare. I will work through each of these assumptions in order. The first assumption that motivates and justifies the use of nudges is that the heuristics and biases research program correctly describes how individuals make decisions. This approach suggests that individuals systematically make mistaken non-reflective judgments that cause them to behave differently from how they would behave if they were the perfectly rational utility maximizers often described in economics (and whom Thaler and Sunstein dub Econs in contrast to Humans). This research program then categorizes these types of mistakes. As an example, consider the effect framing can have on the decisions people make, including whether to have a risky medical procedure. According to Sunstein and Thaler, “When people are told, ‘Of those who undergo this procedure, 90 percent are still alive after five years,’ they are far more likely to agree to the procedure than when they are told, ‘Of those who undergo this procedure, 10 percent are dead after five years.’”2 The two ways of explaining the risk are assumed to be equivalent, so Econs should not be affected by the use of one way of framing the risk over the alternative. And yet, which wording is used does have an impact on the number of people willing to undertake the procedure. For some people, their decision whether to have this procedure is influenced by the way the procedure’s risks are framed, and those individuals are behaving differently than they would if they were Econs. Many such deviations from how people should behave have been categorized and described as cognitive biases. For example, people have been described as having a status quo bias. That is, individuals stay with default options or present states of affairs at higher rates than would be expected if they were Econs. Humans also display what is known as loss

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aversion. That is, individuals value what they already have more than they value gaining the same thing. These and other such deviations from the behavior of Econs are taken to be flaws in human reasoning that lead us to make poor choices. Econs represent the normative standard that Humans fail to meet. When individuals behave differently than they would if they were Econs, like in our example of framing the risks of a medical procedure, those individuals are not merely behaving differently but are deviating from how they should behave. The heuristics and biases program’s explanation of why Humans are influenced by things like framing or defaults stands in contrast to alternative explanations and approaches. Returning to our example of two ways of presenting a procedure’s risks, it might be rejected that these are equivalent expressions. Stating that “of those who undergo this procedure, 90 percent are still alive after five years” might be taken as an implicit endorsement of having the procedure, and the alternative framing might be understood as an implicit recommendation to not have the procedure. The heuristics and biases approach holds that people are influenced by automatic biases that cause them to irrationally treat these logically equivalent statements unequally, but it is plausible that individuals are instead correctly recognizing that these are not logically equivalent because they also include implicit advice on how to act, in which case, choosers may be reacting rationally.3 Similarly, default options might be taken to be endorsements for particular actions, and choosers are correctly responding to defaults instead of irrationally staying with default options more frequently than they should. An alternative to the heuristics and biases research program is the simple heuristics research program. Rather than assuming that individuals should behave like Econs and therefore are making mistakes as a result of automatic cognitive biases, the simple heuristics approach accepts that individuals have limited cognitive capacity, face conditions of uncertainty, have limited information, and to manage these conditions individuals employ reasoning strategies that often, but not always, produce decisions

that are good enough.4 In this view, it is a mistake to hold Humans to the standards of Econs and to identify them as having cognitive failings when they deviate from Econ-like behavior. The simple heuristics research program suggests that individuals should have their environment redesigned and their capacities improved to avoid making errors when the heuristics that usually lead to good enough results are ill-suited. For example, individuals are prone to making mistakes when presented with relative frequencies. If a physician tells a patient that, by making some dietary change, he or she could reduce his or her risk of developing heart disease by 50 percent, then the patient might believe that it is important to make such a change and worth the costs of doing so. However, if that risk is expressed as an absolute risk reduction in the form of natural frequencies from something like 6 in 1,000 to 3 in 1,000, the patient may make a very different assessment of the costs and benefits. The environment that introduced the risk reduction in relative percentage terms was misleading, so to avoid misleading individuals in this way, the environment should be changed to better match how Humans reason. Further, according to this approach, individuals can have their capacities improved by making them more statistically literate such that they can avoid various reasoning errors. Such interventions on the environment or decision-maker competence are referred to as boosts.5 Having made changes to the environment and/ or improved the decision-making skills of choosers, choosers are then expected to make decisions that match their preferences. But advocates of nudging do not endorse this approach. Rather, they make a final assumption that the cognitive biases of choosers should be leveraged to guide choosers into making welfare-improving decisions. Advocates of nudging endorse what is known as libertarian paternalism.6 That is, the cognitive biases of choosers should be used to intentionally guide choosers into making choices that “will make [them] better off, as judged by themselves”7 while also leaving choosers able to nearly costlessly avoid this guidance. Thaler and Sunstein think of libertarian paternalism as a form of soft paternalism. It is paternalistic

because choosers are being intentionally guided in welfare-promoting directions for their own individual benefit. It is libertarian “because choices are not blocked, fenced off, or significantly burdened.”8 Individuals are not coerced or heavily penalized for not doing what they are encouraged to do, and thus, many of the moral concerns associated with the more coercive forms of paternalism are supposedly avoided. As applied to our framing example, if it is believed that having the procedure will make the patient better-off (according to the patient’s own best judgment), then a libertarian paternalist will intentionally select the framing that will activate the patient’s biases and make it more likely that he or she will agree to undergo the procedure. The patient is still free to decide to not have the procedure, and it is nearly costless for him or her to indicate such a decision. In this section, I have identified three assumptions that advocates of nudging endorse. They endorse the heuristics and biases approach to understanding human judgment where individuals have cognitive biases that cause them to unreflectively make predictable mistakes when making decisions. They endorse that the standard for judging whether an individual has made a mistake is the standard of what he or she would have done had he or she been a perfectly rational utility maximizer. And, they endorse using the cognitive biases of choosers to intentionally guide, but not force, choosers to make welfare-promoting decisions (where choosers set the standard of what it is for them to be better-off). We can now look at the definitions of nudge that Thaler and Sunstein provide, along with the limitations of those definitions.

L I M I TAT I O N S O F N U DG E’S DE FI N I T I O N S When choosers make choices, they do so within a context that is referred to as a choice architecture. That architecture includes factors that, according to the heuristics and biases approach, should be irrelevant to the decisions people make but are difference makers nonetheless. And, individuals dubbed choice architects can intentionally structure the choice N u d g in g in P u blic H ealth 

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architecture choosers engage with, including intentionally manipulating the architecture to favor the selection of welfare-promoting options. Aspects of a choice architecture that have been intentionally manipulated in this way satisfy Thaler and Sunstein’s first definition of a nudge, which is “any aspect of the choice architecture that alters people’s behavior in a predictable way without forbidding any options or significantly changing their economic incentives.”9 So, in the framing example, the framing of the risks in a particular way would be a nudge. As a second definition, we can understand a nudge to be “any factor that significantly alters the behavior of Humans, even though it would be ignored by Econs.”10 Unfortunately, these definitions leave a lot of space for confusion when considering whether particular interventions fit these definitions. As Hansen correctly notes, what it means for something to significantly change economic incentives is unclear.11 And, the first definition suggests that incentives can be changed, but this is in tension with the second definition. One should not expect Econs to ever ignore a change in incentives. Further, neither makes it explicit that nudges must be intentional and in welfare-promoting directions. In the absence of such a requirement, there is a disconnect between nudging and the libertarian paternalist commitments of Thaler and Sunstein. To illustrate how these definitions are not specific enough to settle disputes as to whether particular interventions are correctly identified as nudges, consider the following program that Thaler and Sunstein discuss in their chapter: “A Dozen Nudges.” They describe a dollar a day program intended to reduce teen pregnancy that targets teenage girls who already have one child. In the program, “teenage girls with a baby receive a dollar for each day in which they are not pregnant.” In their view, this program works because “the small recurring payment is salient enough to encourage teenage mothers to take steps to avoid getting pregnant again.”12 However, the program clearly changes the economic incentives of teenage mothers, and some should be expected to rationally respond to that incentive by deciding that it is worth accepting a dollar a day and 160 

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delaying having a second child. Much like Econs, they would not ignore this new financial incentive. Thaler and Sunstein seem to think that this program is an example of a nudge, but it does not clearly fit their second definition. There is so much confusion whether some interventions are properly identified as nudges that Selinger and Whyte identify some interventions as falling into their category of “mistaken nudges” and others as “fuzzy nudges.”13 A mistaken nudge is an intervention that functions by changing incentives but is referred to as a nudge anyway. A fuzzy nudge is one where it is unclear if the intervention leverages the cognitive biases of choosers or if it provides new information or changes incentives in a way that rational agents would be sensitive to. Further complicating matters, it is difficult to determine how coercive an intervention can be and still qualify as a nudge. For example, consider New York City Mayor Michael Bloomberg’s plan, which would have taken effect in 2013, to limit the sale of sugary beverages over a certain size in New York City. The plan would have changed the choice architecture for choosers by limiting the size of cups or beverages that could be purchased in some contexts. In an article for The Guardian, Oliver Burkeman described Bloomberg’s big soda ban as “a classic example of a ‘nudge,’ as defined by Cass Sunstein and Richard Thaler in their famous book of that name. It doesn’t stop you guzzling as much Coke as you like, but it modifies your ‘choice architecture’ . . . so as to guide you towards the healthier option.”14 Burkeman is correct that the intervention would not have forced individuals to refrain from drinking as much soda as they wished. They would still have been allowed to get refills or purchase multiple drinks in smaller containers. But Richard Thaler disagrees with this characterization. He claims that the ban was not a nudge, “So don’t blame Bloomberg’s ban on large soda cups on us.”15 It is easy to see Burkeman’s case for considering this intervention a nudge, but Thaler seems to suggest that it is too coercive to qualify as such. This example leads Graboyes and Carges to conclude that “the difference between nudge and coercion is subjective.”16

That the definition of nudge is not precise enough to clearly determine whether some interventions are correctly characterized as a nudge can matter. For one, it matters when it is assumed that nudges are permissible to use or are preferable to alternatives such as bans or mandates. Choice architects may believe that nudges are permissible to use, incorrectly identify some choice architecture they would like to implement as being a nudge, and conclude that it is therefore permissible to implement that choice architecture. Being able to identify some plan or policy as being a nudge would be a useful shorthand if the definition of nudge were clear enough that all nudges share the same morally relevant characteristics, that all nudges were permissible to implement, and that one could accurately differentiate nudges from similar interventions that may be impermissible to implement. That the definition is vague means that fully rational agents should not engage in this type of reasoning. Further, advocates of nudging should not assume that choice architects are free from biases that increase the likelihood that they will engage in such mistaken reasoning. In their analysis of why vagueness may make sliding down a slippery slope more likely, Whitman and Rizzo note that policy-makers, judges, and bureaucrats may be more susceptible toward such flawed reasoning because, unlike other choosers, they “do not face all the costs and benefits of their choices.”17 Having noted that the term “nudge” is imprecise, I will stipulate that a nudge is an element of choice architecture that is intentionally designed to, and succeeds at, leveraging the cognitive biases of choosers to guide their choices in a welfare-promoting direction while leaving it cheap and easy for them to deviate to other selections.18 This definition maintains the connection between nudges and the heuristics and biases approach. It also maintains the commitments to libertarian paternalism.

PUBLIC HEALT H Before discussing two ways of relating nudging and public health, I want to begin with preliminary remarks on public health in general. While it is

unfortunate that the term “nudge” is imprecise, the terms “public” and “health” do not fare much better, and combining them does not obviously improve matters. What is clear is that public health differs from individual health and public health ethics differs from clinical ethics. Unlike categories that focus on the well-being of individual patients, “public health is concerned with promoting and protecting the health of populations, broadly understood.”19 In this section, I will not put forth a particular view about public health. Rather, I will discuss certain types of assumptions that have to be made by any particular account of public health. Specifically, an account of public health must make three types of assumptions: what means are permissible to use to produce desired public health outcomes, what distribution of benefits and burdens should be realized when advancing public health, and what the scope of public health happens to be. I will discuss each of these assumptions in turn. Public health concerns itself with aggregations, such as average life span, obesity rate, or prevalence of heart disease, and there are different types of assumptions that any particular conception of public health needs to make regarding those aggregations. One is that an account of public health needs to make assumptions about the means permitted for achieving some desired aggregate outcome. To make it clear that some assumption regarding permissible means must be made, consider the public health goal of minimizing the number of individuals who die from organ failure for which they are not responsible. There are many different ways that this goal might be pursued. At the extreme is John Harris’ hypothetical survival lottery where “whenever doctors have two or more dying patients who could be saved by transplants, and no suitable organs have come to hand through ‘natural’ deaths, they can ask a central computer to supply a suitable donor” whose organs will then be harvested and used to save those patients.20 Such a scheme of harvesting organs from healthy donors would reduce the aggregate number of individuals dying from organ failure, but it does so using means that most would object to. Instead, an account of public health might assume that only noncoercive N u d g in g in P u blic H ealth 

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means may be used, such as distributing educational materials that encourage individuals to volunteer to be posthumous organ donors. Or, perhaps an account of public health will assume that more coercive means may be used such as mandating that everyone be a posthumous organ donor. But any account of public health will have to make some assumption regarding what means may be used to achieve this or other public health goals even if that assumption is so extreme as to hold that any means are permitted. Another type of assumption that an account of public health needs to make regarding aggregates is what is the desired distribution of benefits and burdens within the relevant population. An account of public health may include the assumption that any improvement in a public health aggregate measure is desirable even if those gains are unevenly realized in society. Alternatively, accounts of public health might assume that an improvement in a public health aggregate measure is desirable only when it benefits the worse off most, or harms no vulnerable subpopulations, or equally benefits all subpopulations. The assumptions one makes about distributional goals of benefits and burdens matter when considering policies such as those designed to discourage obesity or smoking. Consider taxes on sugary drinks and cigarettes that are intended to discourage their consumption and may in fact have that aggregate effect. It should be expected that some individuals will not change their habits in response to the tax, and given that the rate of consumption taxes that one pays does not vary by income, such a tax most burdens those poor individuals who do not decrease their consumption. Such a tax is regressive, and for that reason, should not be implemented according to accounts of public health that preclude placing additional or disproportionate burdens on those individuals. Finally, any account of public health must make assumptions about the appropriate scope of public health. As examples, consider the minimum wage and climate change. Neither seem like traditional public health topics, however, they can be framed as public health issues. In the case of the minimum wage, Narain and Zimmerman find a mixed impact on minimum wage increases across gender and racial/ethnic 162 

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subpopulations. They find that an increase in minimum wage has effects such as an increase in access to care for white men, but a decrease in access to care for white women, and an improvement in dietary quality for white men, but a decrease in dietary quality for Black men.21 That changes in the minimum wage have an impact on aggregate health measures would give some reason for including the minimum wage as within the domain of public health, but others may assume that the public health domain should remain restricted enough that it would exclude the minimum wage and other topics seemingly tangential to population health.

T WO A P P R OAC H E S TO N U DG I N G A N D P U B L I C H E A LT H I have identified three kinds of assumptions that any account of public health must make. Those are assumptions about the means that may be used in pursuit of public health goals, what the desired distribution of benefits and burdens is within the relevant population, and what the appropriate scope of public health happens to be. This list is not intended to be exhaustive, but it will help to demonstrate the tension between nudging and public health. To clarify this tension, I will describe two approaches to nudging and public health. One approach is what I will refer to as a nudgefirst approach. An individual taking such an approach is a committed advocate of nudging and shares its core assumptions that the biases and heuristics approach to understanding human judgment is correct, that individuals should be guided toward making the choices that make them better-off (where they are the judges of what makes them better-off), and that choosers should be permitted to easily and nearly costlessly avoid the outcomes that choice architects guide them toward. As a second priority, such an individual might pursue interventions that improve public health without compromising on those nudge-related commitments. The alternative is a public health–first approach. An individual taking this approach takes his or her

views on public health as basic, including assumptions about means, distributional goals, and the appropriate scope of public health. He or she then considers what nudges may offer as a means for advancing desired public health outcomes. Taking the nudge-first approach has implications for the means, distributional goals, and scope of public health interventions one has reason to endorse. The commitment to libertarian paternalism implies that the means that may be used are constrained. The uses of mandates, hefty fines, or other coercion that is not cheap and easy to avoid may not be used. Rather, the nudge-first approach takes nudging to be the appropriate means for achieving goals. Further, the constraints set by libertarian paternalism require that whatever means are used be intended to help promote the welfare of the individual being nudged instead of being used with the intent of benefitting some third party.22 Second, since the goal when using nudges is simply to help individuals be more like Econs and make well-being improving choices, there is no clear basis for helping individuals in any way that is intended to produce some particular distribution of benefits and burdens over an alternative distribution. It would even be appropriate for an individual taking a nudgefirst approach to advocate for nudges that make the best-off even better-off. After all, nudges that help individuals save more for retirement may exacerbate inequalities in wealth distribution between those with defined contribution plans and those without any retirement plans or savings.23 But that does not seem to concern advocates of nudging individuals to contribute more to their 401(k)s. Finally, the goal of trying to help choosers make welfare-improving choices takes a broad view of welfare that spans all domains such that there is no clear motivation for restricting interventions to just public health, whatever one assumes the proper scope of public health to be. While nudging choosers to buy more fuel-efficient vehicles may improve air quality or help mitigate climate change, those taking a nudge-first approach need not be concerned whether car purchasing is properly within the domain of public health. Someone who is primarily concerned with helping choosers make Econ-like

choices does not have good reason to stay only in the domain of public health. When trying to help choosers behave more like Econs, an individual taking a nudge-first approach may just happen to help individuals in ways that produce aggregate outcomes that align with a particular conception of public health’s assumptions regarding the correct distribution of benefits and burdens and within that conception’s assumptions about the scope of public health. But, there is little reason for an individual taking a nudge-first approach to promote public health because of any characteristic that makes it a special domain of human welfare. I now turn to the public health–first approach. Depending on what one assumes the acceptable means for advancing public health goals happen to be, mandates, hefty fines, and forms of coercion that are more expensive or difficult to avoid than nudges may be viable options. It is unclear why an individual taking the public health–first approach would limit him or herself to using nudges instead of more coercive means. In fact, using nudges may be a poor half-measure since they leave those who fail to make welfare-promoting choices free to make bad choices, particularly when they “have stronger and crazier convictions than the norm.”24 If it is important to achieve a goal such as decreasing the incidence of obesity, then using nudges as a tool leaves space for objections that nudging is not effective enough, and more coercion should be used to achieve the public health goal in question. Further, it seems that many public health interventions act upon individuals for the sake of benefiting third parties. Such interventions are incompatible with libertarian paternalist commitments. And it is not clear that someone taking a public health–first approach will have reasons for limiting the intentions behind his or her favored public health–promoting interventions to paternalistic intentions as opposed to exclusively intentions to benefit third parties. Nudging’s emphasis on the individual also makes its use in public health open to concerns as it relates to distributional goals. In his analysis of whether nudging can “serve as a comprehensive framework for public health ethics,” Ménard contends that N u d g in g in P u blic H ealth 

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“Sunstein and Thaler also neglect another essential component of public health promotion, namely, social justice.”25 If one assumes that public health promotion should include particular patterned distributional ends, then nudges will have to be carefully designed to encourage individuals to individually act such that the desired distribution is realized. When what is desired is a particular pattern of distribution of some costs and benefits across a population, using a nudge may be a poor strategy since individuals may exercise their freedom by choosing other than what they are nudged into choosing and thereby disrupt the desired distributional pattern. It seems that a desired pattern is more likely to be realized with the use of mandates, bans, and the like.26 Finally, when taking the public health–first approach, one assumes a narrower conception of welfare than what is possible when taking a nudge-first approach. The nudge-first approach permits considering chooser welfare in the broadest possible terms. However, the public health–first approach assumes some scope of what is legitimately within the domain of public health, and that should preclude some things even if it is broad enough to include tenuously related subjects such as climate change or the minimum wage. Choice architects face a general problem of knowing what choosers would judge as promoting their welfare. But those attempting to take a public health–first approach to nudging choosers face the concern of knowing what choosers would judge as promoting their welfare in the domain of public health, while leaving it possible that the nudge guides choosers in a direction of worse overall welfare. This may occur when choosers are not willing to trade some good outside the domain of health for some health good. It is possible that one takes a public health–first approach where his or her assumptions about the appropriate means to be used are limited to those compatible with libertarian paternalism, his or her assumptions about the appropriate distributional goals are that whatever emerges from individual actions is the appropriate distribution, and he or she has a broad enough scope for public health that interventions to improve public health lead choosers to make choices that they judge as promoting their 164 

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individual general welfare. But absent such assumptions, someone taking a public health–first approach has no clear reason to limit him or herself to the use of nudges. And absent sharing commitments to libertarian paternalism and the theoretical foundations motivating the use of nudges, there is no clear reason for someone taking a public health first–approach to be interested in them for any of the features that make them distinct. There may be nudges that would produce desired public health outcomes, but there would be no reason to use such nudges qua nudges as opposed to using those particular nudges because they just so happen to efficiently work.

CO N C LU S I O N Nudges seem to hold promise as a tool in the promotion of public health, but on closer inspection, that promise turns out to be quite limited. Part of what might be fueling the idea that there is great promise in the use of nudges in this domain is confusion on what actually qualifies as a nudge. Mistaken nudges, fuzzy nudges, boosts, and other similar interventions may be useful in advancing public health goals, and a failure to distinguish them from nudges may inflate the expectations of what nudges can do. But, when nudges are used when taking a public health–first approach, it is unlikely that they will be used because of any of their features that distinguish them from these alternatives such as the commitment to libertarian paternalism or the assumption that the heuristics and biases approach is the correct description of human judgment. It is more likely that someone taking a public health– first approach will be looking for potential means to achieve some public health promoting end, and some of those means may just happen to be nudges. One’s assumptions about the permissible means, importance of achieving particular distributional goals, and proper scope of public health will likely leave nudges as insufficient for guaranteeing desired results. Further, those taking the nudge-first approach will have a very narrow approach to public health because of the constraints of libertarian paternalism. And, while the health and well-being of individuals may be

improved when taking a nudge-first approach, that these individual improvements lead to improvements in public health is not an intended consequence. Neither the public health–first approach nor the nudgefirst approach seem to be much concerned with what makes the other distinct.

N OTE S 1. Max Nesterak, “Nudging the UK: A Conversation with David Halpern,” Behavioral Scientist, January 5, 2014, https://behavioralscientist.org/nudging-the-uk-a-conver sation-with-david-halpern. 2. Cass Sunstein and Richard Thaler, “Libertarian Paternalism Is Not an Oxymoron,” The University of Chicago Law Review 70, no. 4 (Autumn 2003): 1161. 3.  Sher and McKenzie discuss how logically equivalent frames may include implicit recommendations or provide additional information through the choice of framing. Shlomi Sher and Craig R. M. McKenzie, “Information Leakage from Logically Equivalent Frames,” Cognition 101, no. 3 (October 2006): 467–94. 4.  Till Grüne-Yanoff and Ralph Hertwig, “Nudge versus Boost: How Coherent Are Policy and Theory?,” Minds and Machines 26 (2016): 151. 5.  Grüne-Yanoff and Hertwig, “Nudge versus Boost,” 152. 6.  As Thaler tells it, libertarian paternalism came first, and the term “nudge” was suggested by an editor while trying to come up with what would ultimately be the title of Nudge. Richard Thaler, Misbehaving: The Making of Behavioral Economics (New York: W. W. Norton & Company, 2016), chap. 32. 7.  Richard Thaler and Cass Sunstein, Nudge: Improving Decisions about Health, Wealth, and Happiness, revised edition (New York: Penguin Books, 2009), 5. This standard of using the chooser’s own judgment of what makes him or her better-off appears to differ from the original standard they proposed that choosers be made better-off where “[w]e intend ‘better off’ to be measured as objectively as possible.” Richard H. Thaler and Cass R. Sunstein, “Libertarian Paternalism,” American Economic Review 93, no. 2 (2003): 175. 8.  Thaler and Sunstein, Nudge, 6. 9.  Thaler and Sunstein, Nudge, 6. 10.  Thaler and Sunstein, Nudge, 8. 11.  Pelle Guldborg Hansen, “The Definition of Nudge and Libertarian Paternalism: Does the Hand Fit the Glove?,” European Journal of Risk Regulation 7, no. 1 (2016): 155–74. 12.  Thaler and Sunstein, Nudge, 236. 13.  Evan Selinger and Kyle Whyte, “Is There a Right Way to Nudge? The Practice and Ethics of Choice Architecture,” Sociology Compass 5, no. 10 (2011): 926–28.

14.  Oliver Burkeman, “How Bloomberg’s Soda Ban Is a Classic Example of ‘Choice Architecture,’” The Guardian, July 12, 2012. 15.  Richard Thaler, Twitter Post, May 31, 2012, https:// twitter.com/R_Thaler/status/208273339507150849. 16.  Robert Graboyes and Jessica Carges, “Nudges in Health Care,” in Nudge Theory in Action: Behavioral Design in Policy and Markets, ed. Sherzod Abdukadirov (Switzerland: Springer International Publishing, 2016), 302. 17.  Douglas Glen Whitman and Mario J. Rizzo, “Paternalist Slopes,” NYU Journal of Law & Liberty 2 (2006): 443. 18.  I am heavily influenced here by Hansen’s “The Definition of Nudge and Libertarian Paternalism: Does the Hand Fit the Glove?” 19. Ruth Faden, Justin Bernstein, and Sirine Shebaya, “Public Health Ethics,” The Stanford Encyclopedia of Philosophy (Fall 2020 Edition), ed. Edward N. Zalta, https://plato. stanford.edu/archives/fall2020/entries/public-health -ethics/. 20. John Harris, “The Survival Lottery,” Philosophy 50, no. 191 (January 1975): 83. 21.  Kimberly Danae Cauley Narain and Frederick J. Zimmerman, “Examining the Association of Changes in Minimum Wage with Health across Race/Ethnicity and Gender in the United States,” BMC Public Health 19, 1069 (2019). 22. In fairness, Sunstein and Thaler do consider that behavioral insights may be adapted to promote the interests of third parties in what they call libertarian benevolence. As far as I am aware, libertarian benevolence is rarely discussed. However, if the key motivation for the use of nudges is that people fail to make the choices they would make if they were Econs and they should be helped to make Econ-like choices, then it needs to either be shown that Econs would make choices to promote the interests of others or that there is some other grounds to justify influencing choosers for the benefit of third parties. Sunstein and Thaler, “Libertarian Paternalism Is Not an Oxymoron,” 1162. 23.  Jean-Frédérick Ménard, “A ‘Nudge’ for Public Health Ethics: Libertarian Paternalism as a Framework for Ethical Analysis of Public Health Interventions?,” Public Health Ethics 3, no. 3 (2010): 235. 24.  Sarah Conly, Against Autonomy: Justifying Coercive Paternalism (New York: Cambridge University Press, 2013), 32. 25.  Ménard, “A ‘Nudge’ for Public Health Ethics,” 230, 235. 26.  While Nozick was not concerned with the distributional pattern of public health costs and benefits, and he writes of how transfers upset favored distributional patterns, I am here echoing his more general point regarding freedom’s upsetting of favored patterns without continuous interference. Robert Nozick, Anarchy, State, and Utopia (1974; reprinted, New York: Basic Books, 2013).

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PA R T 2

APPLICATIONS AND TRENDS

SEC TION V

MEDICAL CASE STUDIES

CHAPTER 16

Organ Markets Andreas Albertsen

R

eceiving an organ transplantation holds the promise of prolonging and improving life.1 While an experimental practice five decades ago, organ transplantation is now a standard procedure. It offers hope to those whose vital organs are failing. The promise of this fascinating procedure, however, often goes unfulfilled. Across the world, the demand for organs outstrips supply. Around 110,000 U.S. citizens are waiting for an organ transplantation, and once every hour, a person on that waiting list dies.2 Around 18 people die every day in the European Union, and while 41,000 received a transplant in 2019, 48,000 were added to the waiting lists across Europe.3 With the shortage of organs and the associated suffering, it is a little surprise that a wide range of proposals has been offered in reaction to this. Prominent proposals include various consent systems, such as opt-out4 and mandated choice policies,5 or proposals incentivizing donation through a priority rule providing priority to previous living donors and/ or those registered in the donor register should they need an organ.6 An important strand within the literature suggests that we move away from a donation-based model in favor of an organ procurement model that provides monetary reward to those who part with an organ for the benefit of those in need.7 In doing so, we would treat the organ shortage as we treat many 170

other shortages. When supply is too low (i.e., lower than we would like), the price on offer is increased. From an economic perspective, the price offered to potential donors is currently nothing (or even for living donors, a net negative, if they are not compensated for lost work after the procedure, etc.). Much has changed since one observer declared in 1978 that nobody was seriously defending the market solution to the organ shortage.8 Such proposals are very controversial. The first considerations as to how such a solution might work in practice were, perhaps because of the controversial nature of the proposal, delivered anonymously in 1974.9 However, others soon put forward arguments for the moral permissibility of such proposals.10 The first U.S. document regulating the procurement of organs, The Uniform Anatomic Gift Act from 1968, was silent on the trade of organs.11 The committee chairman behind the document stated that “until the matter of payment becomes a problem of some dimension, the matter should be left to the decency of intelligent human beings.”12 Little more than a decade later, technological development and spectacular events ensured that the discussion could not be postponed further.13 Deregistered Virginia physician Barry H. Jacobs planned to become an organ broker and proposed a procurement system selling kidneys from living donors.14 This was highly controversial. In response, the National Organ Transplant

Act was passed in 1984, effectively banning the trade of organs in the United States.15 In 1989, WHO called for countries to enact a ban on organ sales.16 Various professional organizations have since evaluated and reaffirmed their opposition to payment for organs, an influential example being the Declaration of Istanbul issued at a summit convened by the Transplantation Society and the International Society of Nephrology.17 However, the ban on organ sales has not ended the sale of human organs. Current experiences range from the tightly regulated organ-selling system in Iran18 to black markets thriving in countries that are not sufficiently willing or able to enforce legislation.19

TH E BL ACK MA R K E T Some people waiting for a kidney transplantation opt to buy one on the black market instead of waiting for an organ that may, in the end, not become available before it is too late. Intermediaries connect them with those who are willing to give up one of their kidneys for money. News outlets regularly report on the black market organ trade. Whether giving a voice to desperate buyers or impoverished sellers or reporting from those who make the organ business tick, they deliver fascinating insights into the workings of this trade.20 Over the past decade, several books have discussed and portrayed various aspects of the organ trade.21 The opportunities for encountering this market are not far away. The Facebook page “I want to sell my kidney” provided a chilling view into human desperation, where potential buyers and sellers of kidneys find each other through posts and comments. A BBC inquiry into British citizens buying kidneys in Pakistan found that they did so at prices ranging between $50,000 and $60,000.22 The desperate situation of the buyers is matched by the desperation of those willing to sell. Carney reports from Tsunami Nagar, one of the refugee camps created in India for people relocated after the 2004 tsunami. There, so many have opted to sell their organs that the camp is nicknamed Kidneyville.23 Reports from Pakistan,24 India,25 Philippines,26 and elsewhere confirm that sellers are in plentiful

supply. The black market in organs is massive. In 2007, Shimazono conducted the most comprehensive study available on the extent of the black market. It estimates that commercial organ transplants amount to 5 percent of all organ transplants.27 Estimates suggest that kidneys account for 75 percent of the traded organs, and that 10 percent of the kidney transplantations conducted worldwide are commercial. The organ market is big business. A report by Global Financial Integrity estimated that the illegal organ trade yields a profit between $600 million and $1.2 billion every year. The report notes that this makes it number ten on the list of most profitable illegal activities.28 How do the sellers fare? While assessing the upshot of illegal activities is difficult—what we know about the typical kidney seller is gained from various surveys and interviews conducted among former kidney sellers—it is, perhaps unsurprisingly, the case that sellers are poor in terms of their socio-economic conditions. They seldom receive the promised sum, and post-transplant medical follow-up is more often pledged than received. Their post-transplant outcome is not encouraging, as they often report that their health has deteriorated, and their economic situation has not improved.29 Regarding kidney buyers, there is not much available information. The few available studies find that the medical outcomes from bought kidneys are worse than those from comparative non-commercial transplantations.30 In terms of who the buyers are, we gain little reliable knowledge from the surveys. We can, however, infer, from the prices listed and reported in the already cited material reporting on the organ trade, that they must be quite well-off. In debates over the permissibility of organ markets and organ sales, the current black market plays a dual role. Some who believe that the current ban on organ markets is justified point to the black market as a cautionary tale. They say this is what organ markets look like, and we should not want more of this. On the other hand, those who consider the current ban impermissible are unpersuaded by such reasoning. They do not want to be associated with shoddy dealers, illicit activities, and operations O r g an M a r kets 

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conducted in questionable circumstances, with little or no follow-up care for vendors. Instead, they claim that the black market does not depict what a legal, properly designed organ market would look like; it is rather a consequence of current prohibition policies31—an indication of their failure. Our failure to seriously consider organ markets as a viable alternative has pushed desperate people into illegal and perhaps dangerous activity.

VARIE TIE S OF O R G A N MA RKE T P RO P O SA L S While the debate sometimes is framed as whether an organ market is permissible, this question is in many ways imprecise. Organ market proposals come in many shapes and forms. While the number of available proposals and configurations is too numerous to list, we can compare them along a number of crucial parameters.32 The multiple proposals and how they differ are important because they support the claim that organ markets may be organized in ways that have little resemblance with current black market arrangements. However, this does not suffice to show that critiques are wrong when they claim that some of the badness associated with the black market may also be present in regulated organ markets—at least of the kinds that permit living vendors. This section provides a set of parameters necessary for distinguishing and comparing the various organ market proposals. This is important for moving the debate forward, as what exactly is being proposed or criticized is not always sufficiently clear in the current literature.33 The starting point of this inquiry is that we can identify four core models of organ markets. These four models are chosen because they are the most prominent in both contemporary discussions and have been put forward regularly over the past four decades. While other models could be proposed and imagined, these core models are the focus here because of their prominence. The four models, to be presented shortly, are unregulated market, current market, futures market, and family reward. To be able to understand and discuss 172 

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these models, a number of important parameters are selected. The parameters are chosen because they provide us with a way of understanding how organ markets differ. While the parameters are selected to distinguish the core models, they would also be useful for comparing other proposals. There are five important parameters. The first relates to the source of organs. Some market models allow only for trade in organs from the deceased,34 while others allow living vendors to sell non-vital organs.35 The second parameter is the timing of payment. Here, market models vary according to whether people are paid upon the delivery of an organ36 or paid for consenting to part with an organ after death.37 One way of putting this is whether we pay for consent or only when organs are utilized. The third parameter is the degree of government intervention, which is to be understood as an index reflecting the degree of government interference in the market. Such government interference can assume many forms. Prominent suggestions include the state setting a fixed minimum price, putting barriers in place for entering the market, curtailing the degree of competition among procurement organizations, requiring a degree of post-operative medical care to vendors, and in similar ways attempting to regulate the market. The fourth parameter is the distribution of organs. Here, the important difference is between proposals that allow for a distribution of the acquired organs38 based on the standard market norm of ability-to-pay and those that do not, opting instead to distribute the acquired organs through some other principle, such as need.39 The importance of including this parameter is underscored by Moore, who suggests that much of the opposition to the organ market relates to a market in distribution.40 The fifth parameter is form of payment. Each possible model is compatible with different kinds of payment. While money is the obvious suggestion,41 others suggest tax credits.42 Non-monetary incentives range from health insurance discounts to the individual contributing an organ or to their families,43 donations to charity, money for a funeral, or college education benefits.44 Sterri intriguingly argues that money and ceremonial praise should be offered.45

Employing the chosen parameters, we can understand how the four core models of organ markets differ on their most common interpretation. The characteristics of the core models are laid out in the following and summarized in table 16.1. The driving thought in this presentation is that each organ market model can fulfill a parameter in one of two ways. Either a specific value on a parameter is a defining feature of a model or a common feature. If it is a defining feature, then we cannot imagine such a model with a different value on this parameter. If it is a common feature, then it means that this model is typically proposed with this value on a given parameter but that a different value is possible. The unregulated market is straightforward and would simply result from lifting the current organ payment ban and not introducing any further regulations. The defining features of an unregulated market are that kidneys are bought from living sources, that the degree of government intervention is low (only what the market would require for the market to function, such as government enforcement of contracts),46 that the market also distributes the procured organs, and that cash payment is possible. The extent to which such a market would differ from current black market practices is a source of controversy and will be addressed in the following.47 From such markets, we know that payment is not received by the sellers before the organ has been removed, possibly because of the power asymmetry between organ vendors and those who buy them. However, this is not a defining feature of the unregulated market. The regulated current market allows for living sources of organs, and people are paid for giving up an organ.48 The term “current” is employed here as a noun referring to something happening immediately and not as a synonym for actual. Defining features of a current market are that it allows for living sources and monetary payment and has a high level of state intervention. The main difference between a current market and the unregulated market is that the state profoundly influences how the market functions and the allocation of organs.49 Such government interference can take many forms. The literature suggests a number of initiatives: minimum prices for sellers,50

limiting exit and entry to the market through specific requirements, or perhaps simply choosing a statedriven monopoly as the sole purchaser of organs.51 Regulation can also relate to organ sellers, including strict testing mechanisms aimed at clarifying the psychological robustness and voluntariness of potential sellers and/or a minimum age for sellers.52 While we could imagine different versions of a regulated current market, it is typically presented in a way where living sources are paid before they part with their organs. A futures market in organ procurement is sometimes proposed. When signing a futures contract, one agrees to buy or sell a particular commodity or financial instrument for a fixed price at a specified time in the future. Such contracts are typically made in order to shield parties from the risk of market fluctuations.53 On a futures market, such future contracts (i.e., “futures”) are bought and sold. In philosophical discussions regarding organ procurement, the term is used in a less strict sense.54 The defining feature of a futures market in organs is that people are paid upfront to register as donors.55 Such an arrangement also differs from the models mentioned before in that it only allows procurement of organs from the deceased, but most significantly because people are paid when they consent rather than when the organ has already been removed.56 Typically, such proposals come with levels of state intervention similar to the current market and a state-based distribution of the acquired organs. The form of payment varies between proposals, so both monetary and non-monetary payments are possible. The last model presented here is the family reward model.57 Here, the vendor is not rewarded directly, but instead, the family receives some form of reward.58 The defining features of this model are that the source of organs is the deceased and that payment is conducted upon transplantation. Typically, these systems are proposed with a large degree of government intervention and state-based distribution of organs, but these are common rather than defining features. As with the futures market, the type of payment can be either monetary or non-monetary, but monetary payment seems to be most frequently suggested for this model. O r g an M a r kets 

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TABLE 16.1. Source Deceased Unregulated Market Current Market Futures Market Family Reward

Government Interference

Timing Living

Consent

x x x x

Organ Removal

Low

(x)

x

x

x

(x)

(x)

(x)

(x)

x

Bad Organs One worry pertains to the thought that organ markets may not be as effective as assumed. The idea that organ markets will deliver a great number of organs is easy to understand. After all, standard economic theory would tell us that increasing the price on offer will increase the supply of a good. Dating back to Titmuss’

Form of Payment Monetary

NonMonetary

x (x)

This section briefly introduces various concerns regarding organ markets that have been expressed in the literature. As the discussion surrounding many of them are structurally similar, they will be grouped under five headings: bad organs, crowding out, badness for sellers, commodification, and distributive justice.

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State

x

C R ITIQUE S O F O R G A N MA R KE TS

■

Market

(x)

Drawing on the presented distinctions and how models are usually presented in the literature, we can summarize the differences between the proposed models by distinguishing between defining features and common features of a proposal. As a defining trait, a current market has a great deal of government interference. This is marked with an x. Futures markets and family reward markets are often proposed with a similar level of interference, although we can imagine proposals where this is not the case. The high level of government interference is therefore indicated with an (x).

174 

High

Distribution

x (x) (x)

work on blood donation, there is a much-discussed worry that organs procured at the organ market may be of lower quality.59 The bad organs concern is similar to that expressed by Titmuss regarding blood. The thought is that when there is an economic incentive to “donate,” there is also a financial incentive to conceal important truths about the quality of the good supplied (i.e., concealing past health records or cheating in screening processes). The concern is that this may result in low-quality organs and provide additional health risks to those who receive an organ transplant. There are several ways in which such critiques can be resisted. One would be to point out that much could be done in a regulated organ market to control the quality of the organs procured through payment. This includes screening.60 Another reply would be to argue that something beats nothing. It is better to get a subpar organ than none at all. At least this kind of reasoning is sometimes applied in the debate over donated organs, where such organs are called marginal organs.

Crowding Out Even if the quality of the organs is perhaps not the biggest worry, others maintain that the number of organs procured may not even be all that impressive. This kind of concern is related to what is broadly referred to as the crowding-out thesis—the general thought that once payment and incentives are introduced, we may experience that this extrinsic motivation crowds out other kinds of valuable motivations

that lead people to donate organs in the current nonmarket-based systems.61 The crowding-out thesis is seldom spelled out, or more precisely, it comes in many varieties. Sometimes, it seems that it is sufficient for the worry to arise if some decide that they would no longer donate in a commercial system. Such observations underline that to ensure that a paid donation scheme is a success, we must know more than just that some, who are not currently donors, would be willing to be organ sellers. We must also know that they are sufficient in number to offset those who will no longer participate. While sometimes presented as a big worry in itself that some will no longer want to become donors, this kind of reasoning seems insufficiently concerned with the overall consequences of policies, which would seem to be what matters most. The concern regarding crowding out mostly draws on experiences from other areas. This has led some to question the viability of such a concern in the context of organ donation.62 However, it should be noted that the substitution of family donors is something that we have seen. Living donation rates between family members dropped in Hong Kong when it became possible to travel to China to buy organs. The Iranian system of paid donation has experienced similar difficulties.63

Badness for Sellers A wide range of critiques of organs markets point out that such markets may, in effect, turn out to be bad for those who sell their organs. This badness or wrongness is fleshed out in various distinct ways, to be presented briefly here. One kind of worry pertains to the thought that organ sellers give insufficient consent to the transaction.64 The objection is important because most would balk at the non-consensual removal of organs. Consent can be put under pressure in several ways. The simplest form would be direct coercion.65 This could happen if people were pressured into selling their organs by people who want the money.66 Another source for invalid consent is the social circumstances in which people live. Here, the thought is that people in desperate poverty cannot properly consent to sell their organs. A study found that those who

declared a potential willingness to sell their organs would only do so under very poor economic circumstances.67 Perhaps, people in such circumstances are not in a position to give valid consent to sell their organs. It might be that their desperate circumstances are “forcing” them to sell their organs rather than that their decision to sell was made autonomously. Moreover, they might not understand the consequences of their choices because of lack of education,68 and the procurement system may not be able to screen those who do from those who do not.69 Another concern pertains to exploitation. Here, the idea is that those who sell their organs are exploited on the organ market.70 They receive, so the critique goes, too little for their organs—a disproportionate share of the value at stake in the transaction. Importantly, several theories of exploitation allow for exploitation to be consensual—so this critique is distinct from the one just presented.71 An important recent contribution to this literature has suggested that other kinds of exploitation may be at stake, such as being complicit with injustice and fair process exploitation.72 The latter raises questions regarding whether the organ buyer’s offer to the seller is consistent with the buyer’s moral obligations toward the seller. A third concern relates to the potential harm experienced by organ sellers.73 As already mentioned, experience from black markets suggests that such harm may be substantial. In one study, 82 percent of kidney sellers submit that their living conditions have not improved after the sale; 79 percent regret selling and would not recommend it to others; 62 percent experience deteriorated health; and one study finds that average family income drops by onethird.74 Other studies show that sellers are unable to return to work.75 Taking the concerns in reverse order, there is something immediately puzzling with the harm critique. At first sight, it seems over-inclusive. All else being equal, it should be just as dangerous to sell a kidney as it is to donate one. The latter is not particularly dangerous and something we allow people to do.76 Why should we then not allow them to sell their organs, thereby running a comparable risk? Koplin O r g an M a r kets 

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has developed a sophisticated suggestion as to why this may be.77 Assessing the empirical evidence that sellers on the black market fare poorly in terms of health outcomes, social gains, and psychological/ social consequences, Koplin argues that these would also occur in a regulated organ market. The reason for this is that the sellers on such a market would, as those currently selling on the black market, be vulnerable people in dire social circumstances who would be willing to sell, and the harm they experience because of their social circumstances and vulnerable positions would be unchanged.78 This claim is to a certain degree speculative, and not everyone buys the idea that we cannot regulate to an extent that removes or diminishes those kinds of harm.79 Relatedly, it should be pointed out that we often allow people to make risky and harmful choices—so those who raise the harm argument against organ markets need to explain why this kind of harm is especially problematic. The reply that these concerns may be valid on the black market but that they would be of little concern on a regulated market is also frequent in relation to the concerns regarding consent and exploitation. In general, the reply to such concerns from the other side of the debate suggests that these are problems that a regulated organ market can handle. Call the first kind of reply the regulated market reply. Proponents of this reply argue that the various problems identified with organ markets are not necessary components of organ markets. Rather, they are features of unregulated or poorly regulated markets. The right response is not to ban markets but, rather, that we should regulate them. Proponents of this reply highlight that if we are concerned about exploitation, introducing a minimum price may reduce or remove exploitation—or that there may also be unequal benefits from living donation.80 If harm is our concern, perhaps better screening processes, combined with post-surgery health checkups may remove this.81 If people lack information, we should provide this.82 Such arguments are often put forward in relation to a regulated kidney market with living sellers but are, of course, also applicable to futures markets, where the concerns seem to be clearly less applicable.83 176 

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Often working in tandem with the regulated market reply, there is a different kind of reaction among those who do not believe that the ban on organ sales is permissible. Call the second kind of reply the best option reply. Here, the argumentative strategy is to point out that selling a kidney was the best available solution as judged by the person who did it. Janet Radcliffe-Richards writes the following: “Presumably the prospect of selling his kidney was, to say the least, no more attractive to him than it seems to us, but he nevertheless judged this to be his best available option. As we rush to intervene, therefore, saying how dreadful it is that he should be exploited in this way, we are taking away what he regards as his best option and leaving him in a situation he thinks even worse than the loss of a kidney.”84 She adds, “The worse we think it is to sell a kidney or an eye, the worse we should think the situation in which we leave these people when we remove that option.”85 In response specifically to such claims about the best option, Rippon points out that introducing a regulated organ market might create social or legal pressure to sell that would constitute harm.86 This relates to the broader philosophical question of whether it is always better to have an additional option.87 The point is that the availability of a new option shapes other people’s expectations. This means that refusing to sell a kidney might be judged differently (legally or informally) when this is legal to do as opposed to when it involves the choice of not circumventing the law to sell one.88 Let us consider ways in which this extra opportunity might give rise to added pressures to sell. If it is a requirement for unemployment benefits to liquidate your assets, is a kidney an asset in that regard? Should the value of your kidneys be considered part of your assets in a bankruptcy case?89 These are hypothetical considerations, but Satz mentions how kidneys have been used as collateral for a loan.90 The replies to such a critique include, among other things, that it is an empirical claim whether such pressure would arise,91 and of course, to suggest that if we are afraid that social pressure will be problematic, we must institute regulation to avoid it.92 It may be true that institutional pressures can be muted through law (e.g., by legally declaring kidneys

as not being an asset that one is required to liquidate to receive employment benefits). However, informal pressures—that is, how your choices are deemed by others—may be a different beast, and these problems are likely to be present both on futures markets and markets with living sellers.

Commodification Throughout the literature, concerns of a quite different kind are also raised about organ markets. These pertain to what an organ market means more broadly for society.93 Grouped under a concern for commodification, we may understand these concerns in light of Radin’s distinction between broad and narrow senses of commodification.94 The narrow sense is descriptive; here, commodification simply pertains to the fact that an object is bought and sold. The broader sense, however, relates to people viewing objects as items to be bought and sold. Michael Sandel employs this broader sense of commodification in his influential book on the moral limits of the markets, arguing that such commodification can treat objects in ways that contradict their meaning or purpose. However, while Sandel cites organ markets as one market where this is the case, it is notoriously difficult to say anything convincing about what the purpose of organs are and, hence, to flesh out Sandel’s suggestion. At least once we move beyond specific biological purposes and functions, as it is not altogether clear what the purpose of, say, a kidney is.

Justice Fairness and justice concerns regarding organ markets are quite common. Some point out that organ markets may mean unequal access to organs based on the ability to pay.95 Others point to the idea that organ markets may conflict with basic sentiments in liberal theories of justice, as they may conflict with social bases of self-respect.96 More broadly, several have raised the worry that organ markets thrive on the bad situations of sellers. The position of Veatch is instructive in that regard. Forty years ago, he believed that while an organ market could improve

the situation of the worst off in society, we owed our fellow citizens to improve their situation in other ways. However, having seen his own society’s (i.e., the United States) pauper attempt to do that, Veatch now endorses payment for organs.97 The reasoning is that if society is unwilling to introduce such other measures, we cannot deny the poorest the opportunity of selling a kidney. This points to the interesting phenomenon that those societies who contemplate whether to introduce organ markets may be responsible for the bad circumstances that make some people willing to participate in organ markets.98 However, as Veatch’s argument illustrates, organ markets may be considered a vehicle to improve the situation of the worst off. That might leave us with the impression that those who oppose organ markets are dogmatics clinging to a donation-based system that is failing us. However, even if the organ market is such a vehicle, it would be negligent to ignore that two kinds of injustices fuel the engine that moves that vehicle forward.99 One is the poor circumstances of those who would be sellers on the organ market. Society’s inability or unwillingness to address this in other ways has played too little a role in the debate over organ markets. The other failure is society’s inability or unwillingness to address the unfairness experienced by those suffering from the organ shortage and whose lives are cut short. Individuals’ unwillingness to donate and society’s inability to adequately facilitate donation should also be part of the conversation.

CO N C LU S I O N Organ markets remain a highly controversial attempt to resolve or diminish the shortage of organs and the associated suffering. The debate between those who consider the current ban on organ sales impermissible and those who disagree may be viewed as having reached somewhat of a stalemate. To move forward, it must be recognized that organ markets come in many shapes or forms, some of which have little resemblance with current practices on the black market. However, it should also be kept in mind that it might be easier to say that an organ market will be tightly O r g an M a r kets 

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regulated than to implement it—and that the unjust circumstances of those who will sell even on a regulated market are part of the picture in several ways, either because it may affect their health outcomes, as Koplin suggests, or because it might say something about a society that implementing a kidney market was what we were willing to do for them.

N OTE S 1.  Elisa F. Long, Gary W. Swain, and Abeel A. Mangi, “Comparative Survival and Cost Effectiveness of Advanced Therapies for End-Stage Heart Failure,” Circulation: Heart Failure, February 21, 2014, https://doi.org/10.1161/CIRC HEARTFAILURE.113.000807; H. U. Meier-Kriesche et al., “Survival Improvement among Patients with End-Stage Renal Disease: Trends over Time for Transplant Recipients and Wait-Listed Patients,” Journal of the American Society of Nephrology: JASN 12, no. 6 (June 2001): 1295; R. A. Wolfe et al., “Calculating Life Years from Transplant (LYFT): Methods for Kidney and Kidney-Pancreas Candidates,” American Journal of Transplantation 8, no. 4p2 (April 2008): 997–1011, https://doi.org/10.1111/j.1600-6143.2008.02177.x. 2.  HRSA, “Organ Donation Statistics,” 2021, https:// www.organdonor.gov/learn/organ-donation-statistics. 3.  Council of Europe, “Organ Donation and Transplantation,” Human Rights Channel, 2020, https://www.coe.int/ en/web/human-rights-channel/organ-donation. 4.  S. M. Bird and J. Harris, “Time to Move to Presumed Consent for Organ Donation,” BMJ 340, no. may04 1 (May 4, 2010): c2188, https://doi.org/10.1136/bmj.c2188; C Cohen, “The Case for Presumed Consent to Transplant Human Organs after Death,” Transplantation Proceedings 24, no. 5 (October 1992): 2168–72; Jesse Dukeminier and David Sanders, “Organ Transplantation: A Proposal for Routine Salvaging of Cadaver Organs,” New England Journal of Medicine 279, no. 8 (August 22, 1968): 413–19, https:// doi.org/10.1056/NEJM196808222790807; Geoff Koffman, Inderjit Singh, and Simon Bramhall, “Presumed Consent for Organ Donation,” Annals of The Royal College of Surgeons of England 93, no. 4 (May 1, 2011): 268–72, https:// doi.org/10.1308/147870811X571136; T. M. Wilkinson, Ethics and the Acquisition of Organs, Issues in Biomedical Ethics (Oxford; New York: Oxford University Press, 2011); Jurgen De Wispelaere, “Tacitly Opting Out of Organ Donation: Too Presumptuous after All?,” Journal of Medical Ethics 38, no. 2 (February 2012): 73–74, https://doi.org/10.1136/medethics-2011-100252; Ben Saunders, “Opt-Out Organ Donation without Presumptions,” Journal of Medical Ethics 38, no. 2 (2012): 69–72; Michael B. Gill, “Presumed Consent, Autonomy, and Organ Donation,” The Journal of Medicine and Philosophy 29, no. 1 (February 1, 2004): 37–59, https://doi 178 

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.org/10.1076/jmep.29.1.37.30412; Sören Flinch Midtgaard and Andreas Albertsen, “Opt-Out to the Rescue: Organ Donation and Samaritan Duties,” Public Health Ethics, May 31, 2021, https://doi.org/10.1093/phe/phab010. 5. Jens Damgaard Thaysen and Andreas Albertsen, “Mandated Choice Policies: When Are They Preferable?,” Political Research Quarterly, July 10, 2020, https://doi .org/10.1177/1065912920936361; Cass R. Sunstein, Choosing Not to Choose: Understanding the Value of Choice (New York, NY: Oxford University Press, 2015); Kyle Powys Whyte et al., “Nudge, Nudge or Shove, Shove—The Right Way for Nudges to Increase the Supply of Donated Cadaver Organs,” The American Journal of Bioethics 12, no. 2 (2012): 32–39, https://doi.org/10.1080/15265161.2011.6 34484; Pelle Guldborg Hansen, “Should We Be ‘Nudging’ for Cadaveric Organ Donations?,” The American Journal of Bioethics 12, no. 2 (February 2012): 46–48, https://doi.org /10.1080/15265161.2011.634950; Susan E. Herz, “Two Steps to Three Choices: A New Approach to Mandated Choice,” Cambridge Quarterly of Healthcare Ethics 8, no. 3 (July 1999): 340–47, https://doi.org/10.1017/S0963180199803090; Douglas MacKay and Alexandra Robinson, “The Ethics of Organ Donor Registration Policies: Nudges and Respect for Autonomy,” The American Journal of Bioethics 16, no. 11 (November 2016): 3–12, https://doi.org/10.1080/15265161 .2016.1222007. 6. Andreas Albertsen, “Priority to Organ Donors: Personal Responsibility, Equal Access and the Priority Rule in Organ Procurement,” Diamitros 51 (March 26, 2017): 137–52; Corinne Berzon, “Israel’s 2008 Organ Transplant Law: Continued Ethical Challenges to the Priority Points Model,” Israel Journal of Health Policy Research 7, no. 1 (December 2018), https://doi.org/10.1186/s13584-018-0203-6; Govert Den Hartogh, “Trading with the Waiting-List: The Justice of Living Donor Exchange,” Bioethics 24, no. 4 (May 2010): 190– 98, https://doi.org/10.1111/j.1467-8519.2008.00684.x; Jacob Lavee et al., “A New Law for Allocation of Donor Organs in Israel,” The Lancet 375, no. 9720 (March 2010): 1131–33, https://doi.org/10.1016/S0140-6736(09)61795-5; David Steinberg, “An ‘Opting In’ Paradigm for Kidney Transplantation,” The American Journal of Bioethics 4, no. 4 (September 2004): 4–14, https://doi.org/10.1080/15265160490518557. 7. A. H. Barnett, R. D. Blair, and D. L. Kaserman, “Improving Organ Donation: Compensation versus Markets,” Inquiry: A Journal of Medical Care Organization, Provision and Financing 29, no. 3 (1992): 372–78; W. Barnett, Michael Saliba, and Deborah Walker, “A Free Market in Kidneys: Efficient and Equitable,” Independent Review 5, no. 3 (2001): 373–84; Gary S. Becker and Julio Jorge Elías, “Introducing Incentives in the Market for Live and Cadaveric Organ Donations,” Journal of Economic Perspectives 21, no. 3 (August 2007): 3–24, https://doi.org/10.1257/jep.21.3.3; Mark J. Cherry, Kidney for Sale by Owner: Human Organs, Transplantation, and the Market (Washington, DC: Georgetown University Press, 2005); James Stacey Taylor, Stakes

and Kidneys: Why Markets in Human Body Parts Are Morally Imperative, Live Questions in Ethics and Moral Philosophy (Aldershot, Hants, England; Burlington, VT: Ashgate Publishing, 2005); Stephen Wilkinson, Bodies for Sale: Ethics and Exploitation in the Human Body Trade (London; New York: Routledge, 2003); Janet Radcliffe-Richards et al., “The Case for Allowing Kidney Sales,” The Lancet 351, no. 9120 (1998): 1950–52; Janet Radcliffe Richards, The Ethics of Transplants: Why Careless Thought Costs Lives (Oxford; New York: Oxford University Press, 2012); Janet Radcliffe Richards, “Nephrarious Goings On: Kidney Sales and Moral Arguments,” Journal of Medicine and Philosophy 21, no. 4 (1996): 375–416; Luke Semrau, “Kidneys Save Lives: Markets Would Probably Help,” Public Affairs Quarterly 28, no. 1 (2014): 71–93; Aksel Braanen Sterri, “Why States Should Buy Kidneys,” Journal of Applied Philosophy, 2021; Seán Columb, Trading Life: Organ Trafficking, Illicit Networks, and Exploitation (Stanford, CA: Stanford University Press, 2020). 8. James L. Muyskens, “An Alternative Policy for Obtaining Cadaver Organs for Transplantation,” Philosophy and Public Affairs 8, no. 1 (1978): 92. 9.  Anonymous, “The Sale of Human Body Parts,” Michigan Law Review 72, no. 6 (May 1, 1974): 1182–64, https:// doi.org/10.2307/1287620. 10.  M. Brams, “Transplantable Human Organs: Should Their Sale Be Authorized by State Statutes?,” American Journal of Law & Medicine 3, no. 2 (1977): 183–95; Susan Hankin Denise, “Regulating the Sale of Human Organs,” Virginia Law Review 71, no. 6 (September 1985): 1015–38. 11.  David E. Chapman, “Retailing Human Organs under the Uniform Commercial Code,” John Marshall Law Review 16 (1982): 399; Henry Hansmann, “The Economics and Ethics of Markets for Human Organs,” Journal of Health Politics, Policy and Law 14, no. 1 (1989): 57–58. 12.  Shelby E. Robinson, “Organs for Sale—An Analysis of Proposed Systems for Compensating Organ Providers,” University of Colorado Lae Review 70 (1999): 1026. 13. Jason Altman, “Organ Transplantations: The Need for an International Open Organ Market,” Touro International Law Review 5 (1994): 170; Robinson, “Organs for Sale—An Analysis of Proposed Systems for Compensating Organ Providers,” 1026. 14.  Renée C. Fox and Judith P. Swazey, Spare Parts: Organ Replacement in American Society (Oxford : New York: Oxford University Press, 1992), 65; Robinson, “Organs for Sale— An Analysis of Proposed Systems for Compensating Organ Providers,” 1036. 15. Robinson, “Organs for Sale—An Analysis of Proposed Systems for Compensating Organ Providers,” 1029. 16. Altman, “Organ Transplantations: The Need for an International Open Organ Market,” 172–76; WHO, “Guiding Principles on Human Organ Transplantation,” 1989, http://www.who.int/ethics/topics/transplantation_guid ing_principles/en/index1.html; WHO, “Guiding Principles on Human Organ Transplantation,” The Lancet 337, no.

8755 (June 1991): 1470–71, https://doi.org/10.1016/0140 -6736(91)93150-8. 17. Participants in the International Summit on Transplant Tourism and Organ Trafficking Convened by The Transplantation Society and International Society of Nephrology in Istanbul, Turkey, April 30–May 2, 2008, “The Declaration of Istanbul on Organ Trafficking and Transplant Tourism,” Clinical Journal of the American Society of Nephrology 3, no. 5 (July 30, 2008): 1227–31, https://doi .org/10.2215/CJN.03320708. 18. Kiarash Aramesh, “A Closer Look at the Iranian Model of Kidney Transplantation,” The American Journal of Bioethics 14, no. 10 (September 17, 2014): 35–37, https://doi .org/10.1080/15265161.2014.947044; Miran Epstein, “Playing Into the Hands of the Promarket Campaigners,” The American Journal of Bioethics 14, no. 10 (September 17, 2014): 39–40, https://doi.org/10.1080/15265161.2014.947043; Sigrid Fry-Revere, “The Truth about Iran,” The American Journal of Bioethics 14, no. 10 (September 17, 2014): 37–38, https:// doi.org/10.1080/15265161.2014.947042; A. J. Ghods and S. Savaj, “Iranian Model of Paid and Regulated LivingUnrelated Kidney Donation,” Clinical Journal of the American Society of Nephrology 1, no. 6 (October 11, 2006): 1136–45, https://doi.org/10.2215/CJN.00700206; Mitra Mahdavi-Mazdeh, “The Iranian Model of Living Renal Transplantation,” Kidney International 82, no. 6 (September 2012): 627–34, https://doi.org/10.1038/ki.2012.219; Atieh Pajouhi et al., “Paid Living Kidney Transplantation in Iran: Rethinking the Challenges,” The American Journal of Bioethics 14, no. 10 (September 17, 2014): 40–42, https://doi.org /10.1080/15265161.2014.947443; Adibul Hasan S. Rizvi et al., “Regulated Compensated Donation in Pakistan and Iran,” Current Opinion in Organ Transplantation 14, no. 2 (April 2009): 124–28. 19.  I. Glenn Cohen, Patients with Passports: Medical Tourism, Law and Ethics (New York, NY: Oxford University Press, 2015); Gabriel M. Danovitch et al., “Organ Trafficking and Transplant Tourism: The Role of Global Professional Ethical Standards—The 2008 Declaration of Istanbul,” Transplantation Journal 95, no. 11 (June 2013): 1306–12, https:// doi.org/10.1097/TP.0b013e318295ee7d; Michael P. Jaycox, “Coercion, Autonomy, and the Preferential Option for the Poor,” Developing World Bioethics 12, no. 3 (December 2012): 135–47, https://doi.org/10.1111/j.1471-8847.2012.00327.x; Farhat Moazam, Riffat Moazam Zaman, and Aamir M. Jafarey, “Conversations with Kidney Vendors in Pakistan,” Hastings Center Report 39, no. 3 (2009): 29–44; Farhat Moazam, “Pakistan and Kidney Trade: Battles Won, Battles to Come,” Medicine, Health Care and Philosophy 16, no. 4 (2013): 925–28; Roger Lee Mendoza, “Kidney Black Markets and Legal Transplants: Are They Opposite Sides of the Same Coin?,” Health Policy (Amsterdam, Netherlands) 94, no. 3 (March 2010): 255–65, https://doi.org/10.1016/j .healthpol.2009.10.005; Yosuke Shimazono, “The State of the International Organ Trade: A Provisional Picture O r g an M a r kets 

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Based on Integration of Available Information,” Bulletin 85, no. 12 (2007): 901–80; Leigh Turner, “Commercial Organ Transplantation in the Philippines,” Cambridge Quarterly of Healthcare Ethics 18, no. 2 (2009): 192–96. 20.  Arndt Ginzel, Martin Kraushaar, and Steffen Winter, “Vera’s Kidney, Walter’s Money: Desperation, Greed and the Global Organ Trade,” Spiegel Online, August 3, 2012, sec. International, http://www.spiegel.de/international/world/the-illegal-trade-in-organ-is-fueled-bydesperation-and-growing-a-847473.html; Priyanka Vora, “The Illegal Organ Trade Thrives in India—and It Isn’t Likely to End Soon,” Scroll.in, 2016, https://scroll.in /pulse/813993/the-illegal-organ-trade-thrives-in-india -and-it-isnt-likely-to-end-soon. 21.  Scott Carney, The Red Market: On the Trail of the World’s Organ Brokers, Bone Thieves, Blood Farmers, and Child Traffickers, 1st ed. (New York: William Morrow, 2011); Cohen, Patients with Passports; Donna Dickenson, Body Shopping: The Economy Fuelled by Flesh and Blood (Oxford: Oneworld, 2008); Susanne Lundin, Organs for Sale: An Ethnographic Examination of the International Organ Trade, Palgrave Pivot (Basingstoke: Palgrave, 2015); Leonard Territo and Rande Matteson, eds., The International Trafficking of Human Organs: A Multidisciplinary Perspective, Advances in Police Theory and Practice (Boca Raton, FL: Taylor & Francis, 2011); Cathy Waldby and Robert Mitchell, Tissue Economies: Blood, Organs, and Cell Lines in Late Capitalism, Science and Cultural Theory (Durham, NC: Duke University Press, 2006); Columb, Trading Life; Aslıhan Sanal, New Organs within Us: Transplants and the Moral Economy, Experimental Futures (Durham, NC: Duke University Press, 2011). 22.  Sophie Evans, “Desperate Brits Buying Kidney Transplants on Pakistan Black Market for £47,000,” Mirror, January 25, 2017, http://www.mirror.co.uk/news/uk-news /desperate-brits-travelling-pakistan-buy-9690665. 23. Carney, The Red Market. 24.  Moazam, Zaman, and Jafarey, “Conversations with Kidney Vendors in Pakistan.” 25.  Madhav Goyal, “Economic and Health Consequences of Selling a Kidney in India,” JAMA 288, no. 13 (October 2, 2002): 1589, https://doi.org/10.1001/jama.288.13.1589. 26. Cohen, Patients with Passports, 281. 27. Yosuke Shimazono, “The State of the International Organ Trade: A Provisional Picture Based on Integration of Available Information,” Bulletin of the World Health Organization 85, no. 12 (2007): 955–62. 28.  Jeremy Haken, “Transnational Crime in the Developing World,” Global Financial Integrity 22 (2011): 1724. 29. Cohen, Patients with Passports; Goyal, “Economic and Health Consequences of Selling a Kidney in India”; Moazam, Zaman, and Jafarey, “Conversations with Kidney Vendors in Pakistan”; Monir Moniruzzaman, “‘Living Cadavers’ in Bangladesh: Bioviolence in the Human Organ Bazaar: Bioviolence in the Human Organ Bazaar,” Medical Anthropology Quarterly 26, no. 1 (March 2012): 180 

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69–91, https://doi.org/10.1111/j.1548-1387.2011.01197.x; Debra A. Budiani-Saberi and Francis L. Delmonico, “Organ Trafficking and Transplant Tourism: A Commentary on the Global Realities,” American Journal of Transplantation 8, no. 5 (2008): 925–29. 30. Cohen, Patients with Passports, 178–280; Fatma Al Rahbi and Issa Al Salmi, “Commercial Kidney Transplantation: Attitude, Knowledge, Perception, and Experience of Recipients,” Kidney International Reports 2, no. 4 (July 2017): 626–33, https://doi.org/10.1016/j.ekir.2017.02.010. 31.  Epstein, Richard A., “How to Create Markets in Contestable Commodities,” in The Global Body Market: Altruism’s Limits, ed. Michele Goodwin (New York, NY: Cambridge University Press, 2014), 44–66. 32. Andreas Albertsen, “If the Price Is Right: The Ethics and Efficiency of Market Solutions to the Organ Shortage,” Journal of Bioethical Inquiry, June 15, 2020, https://doi .org/10.1007/s11673-020-09981-y. 33.  David J. Rothman, “Ethical and Social Consequences of Selling a Kidney,” Jama 288, no. 13 (2002): 1640–41. 34. Altman, “Organ Transplantations: The Need for an International Open Organ Market”; Chapman, “Retailing Human Organs under the Uniform Commercial Code”; M. J. Lysaght and J. Mason, “The Case for Financial Incentives to Encourage Organ Donation,” ASAIO Journal (American Society for Artificial Internal Organs: 1992) 46, no. 3 (June 2000): 253–56; Anonymous, “The Sale of Human Body Parts”; D. J. Rothman et al., “The Bellagio Task Force Report on Transplantation, Bodily Integrity, and the International Traffic in Organs,” Transplantation Proceedings 29, no. 6 (September 1997): 2739–45, https://doi.org/10.1016 /S0041-1345(97)00577-0. 35.  Barnett, Saliba, and Walker, “A Free Market in Kidneys: Efficient and Equitable”; Gerald Dworkin, “Market and Morals: The Case for Organ Sales,” in Morality, Harm, and the Law, ed. Dworkin, Gerald (Boulder: Westview Press, 1994); Charles A. Erin and John Harris, “A Monopsonistic Market: Or How to Buy and Sell Human Organs, Tissues and Cells Ethically,” in Life and Death under High Technology Medicine, ed. Ian Robinson, Fulbright Papers, v. 15 (Manchester, UK ; New York, NY : Manchester University Press in association with the Fulbright Commission, London; Distributed exclusively in the United States and Canada by St. Martin’s Press, 1994); Charles A. Erin and John Harris, “An Ethical Market in Human Organs,” Journal of Medical Ethics 29, no. 3 (2003): 137–38; Michael B. Gill and Robert M. Sade, “Paying for Kidneys: The Case against Prohibition,” Kennedy Institute of Ethics Journal 12, no. 1 (2002): 17–45; Timothy M. Hartman, “The Buying and Selling of Human Organs from the Living: Why Not?,” Akron Law Review 13, no. 1 (1979): 152–74; Radcliffe-Richards et al., “The Case for Allowing Kidney Sales”; Richards, The Ethics of Transplants. A combination model allowing both deceased and living sources can be treated as two distinct regimes operating within the same jurisdiction.

36.  Richard Michael Boyce, “Organ Transplantation Crisis: Should the Deficit Be Eliminated through Inter Vivos Sales,” Akron Law Review 17 (1983): 283–302; Chapman, “Retailing Human Organs under the Uniform Commercial Code”; The Council of The Transplantation Society, “Commercialisation in Transplantation: The Problems and Some Guidelines for Practice,” The Lancet 326, no. 8457 (September 1985): 715–16, https://doi.org/10.1016/S0140-6736(85)92947-2; David E. Jefferies, “The Body as Commodity: The Use of Markets to Cure the Organ Deficit,” Indiana Journal of Global Legal Studies, 1998, 621–58; Lysaght and Mason, “The Case for Financial Incentives to Encourage Organ Donation”; T. G. Peters, “Life or Death: The Issue of Payment in Cadaveric Organ Donation,” JAMA 265, no. 10 (March 13, 1991): 1302–5; Anonymous, “The Sale of Human Body Parts.” 37. Barnett, Blair, and Kaserman, “Improving Organ Donation”; Hansmann, “The Economics and Ethics of Markets for Human Organs”; Richard Schwindt and Aidan R. Vining, “Proposal for a Future Delivery Market for Transplant Organs,” Journal of Health Politics, Policy and Law 11, no. 3 (1986): 483–500; J. R. Rinehart, “The Market Approach to Organ Shortages,” Journal of Health Care Marketing 8, no. 1 (March 1988): 72–75. 38. Barnett, Saliba, and Walker, “A Free Market in Kidneys: Efficient and Equitable”; Chapman, “Retailing Human Organs under the Uniform Commercial Code”; Hansmann, “The Economics and Ethics of Markets for Human Organs”; Rinehart, “The Market Approach to Organ Shortages.” 39.  Dworkin, “Market and Morals: The Case for Organ Sales”; Alberto Giubilini, “Why and How to Compensate Living Organ Donors: Ethical Implications of the New Australian Scheme: Why and How to Compensate Living Organ Donors,” Bioethics 29, no. 4 (May 2015): 283–90, https://doi.org/10.1111/bioe.12088; David Kaserman, “Markets for Organs: Myths and Misconceptions,” The Journal of Contemporary Health Law and Policy 18 (2001): 567; J. Harvey, “Paying Organ Donors,” Journal of Medical Ethics 16, no. 3 (September 1, 1990): 117–19, https://doi .org/10.1136/jme.16.3.117; Gill and Sade, “Paying for Kidneys: The Case against Prohibition”; Jefferies, “The Body as Commodity: The Use of Markets to Cure the Organ Deficit”; Lysaght and Mason, “The Case for Financial Incentives to Encourage Organ Donation”; Peters, “Life or Death: The Issue of Payment in Cadaveric Organ Donation”; Rothman et al., “The Bellagio Task Force Report on Transplantation, Bodily Integrity, and the International Traffic in Organs”; Anonymous, “The Sale of Human Body Parts.” 40. Francis D. Moore, “Three Ethical Revolutions: Ancient Assumptions Remodeled under Pressure of Transplantation,” Health Policy 16, no. 2 (1990): 171. 41.  Schwindt and Vining, “Proposal for a Future Delivery Market for Transplant Organs,” 492. 42. Barnett, Blair, and Kaserman, “Improving Organ Donation”; T. Søbirk Petersen and K. Lippert-Rasmussen,

“Ethics, Organ Donation and Tax: A Proposal,” Journal of Medical Ethics 38, no. 8 (December 17, 2011): 451–57, https://doi.org/10.1136/medethics-2011-100163; Kasper Lippert-Rasmussen and Thomas Søbirk Petersen, “Ethics, Organ Donation and Tax: A Reply to Quigley and Taylor,” Journal of Medical Ethics 38, no. 8 (June 1, 2012): 463–64, https://doi.org/10.1136/medethics-2012-100580; L. Dwayne Barney and R. Larry Reynolds, “An Economic Analysis of Transplant Organs,” Atlantic Economic Journal 17, no. 3 (1989): 15. Varying the price in accordace with people’s income has also been proposed by Jessica Cynowiec, Jennifer Kim, and Yasir A Qazi, “Incentivizing Living Organ Donation,” Current Opinion in Organ Transplantation 14, no. 2 (April 2009): 201–5, https://doi.org/10.1097 /MOT.0b013e3283292582. 43. Robert Arnold et al., “Financial Incentives for Cadaver Organ Donation: An Ethical Reappraisal,” Transplantation 73, no. 8 (April 27, 2002): 1361–67; Hansmann, “The Economics and Ethics of Markets for Human Organs.” 44.  Nuffield Council on Bioethics, “Human Bodies: Donation for Medicine and Research,” London: Nuffield Council’s Report on Human Bodies, Publikované 11 (2011); Robinson, “Organs for Sale—An Analysis of Proposed Systems for Compensating Organ Providers.” There are of course a number of further issues to settle for anyone seeking to implement any of these discussed here. These are not uncontroversial but seem relevant for a broader range of procurement systems. Such issues include which geographical area the system spans: Altman, “Organ Transplantations: The Need for an International Open Organ Market”; Axel Ockenfels and Joachim Weimann, “The Supply Side of Organ Allocation,” Analyse & Kritik 23 (2001): 280–85, and how to handle minors and adults who lack decision-making capacity. In discussions of the market, some suggest no minors,C. E. Harris and S. P. Alcorn, “To Solve a Deadly Shortage: Economic Incentives for Human Organ Donation,” Issues in Law & Medicine 16, no. 3 (2001): 213–33, while others are open to both minors and the mentally incompetent. Hartman, “The Buying and Selling of Human Organs from the Living,” 169. Children should be given attention because many needy recipients are children. Schwindt and Vining, “Proposal for a Future Delivery Market for Transplant Organs,” 486; Aidan R. Vining and Richard Schwindt, “Have a Heart: Increasing the Supply of Transplant Organs for Infants and Children,” Journal of Policy Analysis and Management 7, no. 4 (1988): 706, https:// doi.org/10.2307/3323490. 45. Aksel Braanen Sterri, “Prize, Not Price: Reframing Rewards for Kidney Donors,” Journal of Medical Ethics 47, no. 12 (December 2021): e57, https://doi.org/10.1136 /medethics-2020-106172. 46.  Walter E. Block, “Organ Transplant: Using the Free Market Solves the Problem,” Journal of Clinical Research & Bioethics 2, no. 3 (2011), https://doi.org/10.4172/2155 -9627.1000111. O r g an M a r kets 

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47.  Becker and Elías, “Introducing Incentives in the Market for Live and Cadaveric Organ Donations”; Benjamin Hippen, “All the More Reason: Why Julian Koplin Should Support a Trial of Incentives for Organ Donation,” The American Journal of Bioethics 14, no. 10 (September 17, 2014): 31–33, https://doi.org/10.1080/15265161.2014.9470 47; Julian Koplin, “Assessing the Likely Harms to Kidney Vendors in Regulated Organ Markets,” The American Journal of Bioethics 14, no. 10 (October 3, 2014): 7–18, https://doi .org/10.1080/15265161.2014.947041; Monir Moniruzzaman, “Regulated Organ Market: Reality versus Rhetoric,” The American Journal of Bioethics 14, no. 10 (September 17, 2014): 33–35, https://doi.org/10.1080/15265161.2014.947801. 48.  Erin and Harris, “A Monopsonistic Market: Or How to Buy and Sell Human Organs, Tissues and Cells Ethically”; Erin and Harris, “An Ethical Market in Human Organs”; Michael M. Friedlaender, “The Right to Sell or Buy a Kidney: Are We Failing Our Patients?,” The Lancet 359, no. 9310 (2002): 971–73; Benjamin Hippen and Arthur Matas, “Incentives for Organ Donation in the United States: Feasible Alternative or Forthcoming Apocalypse?,” Current Opinion in Organ Transplantation 14, no. 2 (April 2009): 140–46, https://doi.org/10.1097 /MOT.0b013e3283295e0d; Taylor, Stakes and Kidneys; James Stacey Taylor, “Avoiding Harms to Kidney Vendors through Legal, Regulated Markets,” The American Journal of Bioethics 14, no. 10 (September 17, 2014): 21–22, https:// doi.org/10.1080/15265161.2014.947802. 49.  T. Randolph Beard, David L. Kaserman, and Rigmar Osterkamp, The Global Organ Shortage: Economic Causes, Human Consequences, Policy Responses (Stanford, CA: Stanford Economics and Finance, an imprint of Stanford University Press, 2013). 50.  Lysaght and Mason, “The Case for Financial Incentives to Encourage Organ Donation”; Ryan Tonkens, “Mistakes and Kidneys,” The American Journal of Bioethics 14, no. 10 (September 17, 2014): 42–44, https://doi.org/10.1080 /15265161.2014.947046. 51.  Erin and Harris, “A Monopsonistic Market: Or How to Buy and Sell Human Organs, Tissues and Cells Ethically”; Kaserman, “Markets for Organs: Myths and Misconceptions”; Ockenfels and Weimann, “The Supply Side of Organ Allocation.” 52. Harvey, “Paying Organ Donors.”; Hartman, “The Buying and Selling of Human Organs from the Living”; Arthur J. Matas, Benjamin Hippen, and Sally Satel, “In Defense of a Regulated System of Compensation for Living Donation,” Current Opinion in Organ Transplantation 13, no. 4 (August 2008): 383, https://doi.org/10.1097 /MOT.0b013e328308b2d9; Taylor, “Avoiding Harms to Kidney Vendors through Legal, Regulated Markets.” 53. “Futures Market,” Investopedia, November 23, 2003, http://www.investopedia.com/terms/f/futuresmarket.asp.

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54.  Some uses, which are arguably closer to what the term means on the stock exchange, are similar to what is here termed the family reward model. See, Harris and Alcorn, “To Solve a Deadly Shortage”; Waldby and Mitchell, Tissue Economies. 55.  Hansmann, “The Economics and Ethics of Markets for Human Organs”; Schwindt and Vining, “Proposal for a Future Delivery Market for Transplant Organs.” 56.  We can imagine a futures market with living sources, but this discussion is set aside here. 57. Arnold et al., “Financial Incentives for Cadaver Organ Donation”; Harris and Alcorn, “To Solve a Deadly Shortage”; G. Novelli et al., “Is Legalizing the Organ Market Possible?,” Transplantation Proceedings 39, no. 6 (August 2007): 1743–45, https://doi.org/10.1016/j.transproceed .2007.05.075; Robinson, “Organs for Sale—An Analysis of Proposed Systems for Compensating Organ Providers.” 58.  Michele Goodwin, Black Markets: The Supply and Demand of Body Parts (New York: Cambridge University Press, 2006). 59.  Anonymous, “The Sale of Human Body Parts,” 1225; Denise, “Regulating the Sale of Human Organs.” 60.  Chapman, “Retailing Human Organs under the Uniform Commercial Code”; Matas, Hippen, and Satel, “In Defense of a Regulated System of Compensation for Living Donation”; Goodwin, Black Markets, 152–55. 61.  Michael J Sandel, What Money Can’t Buy: The Moral Limits of Markets (New York: Farrar, Straus and Giroux, 2012); Robinson, “Organs for Sale—An Analysis of Proposed Systems for Compensating Organ Providers”; Margaret M. Byrne and Peter Thompson, “A Positive Analysis of Financial Incentives for Cadaveric Organ Donation,” Journal of Health Economics 20, no. 1 (January 2001): 69–83, https://doi.org/10.1016/S0167-6296(00)00065-5. 62. Luke Semrau, “When the Patina of Empirical Respectability Wears off: Motivational Crowding and Kidney Sales,” Ethical Theory and Moral Practice, 2019, 1–17. 63.  Javaad Zargooshi, “Iranian Kidney Donors: Motivations and Relations with Recipients,” The Journal of Urology 165, no. 2 (2001): 386–92. 64. P. M. Hughes, “Constraint, Consent, and Well-Being in Human Kidney Sales,” Journal of Medicine and Philosophy 34, no. 6 (December 1, 2009): 606–31, https://doi .org/10.1093/jmp/jhp049. 65.  Glasson J. et al., “Financial Incentives for Organ Procurement: Ethical Aspects of Future Contracts for Cadaveric Donors,” Archives of Internal Medicine 155, no. 6 (March 27, 1995): 581–89, https://doi.org/10.1001 /archinte.1995.00430060038005; Thomas H. Murray, “On the Human Body as Property: The Meaning of Embodiment, Markets, and the Meaning of Strangers,” University of Michigan Journal of Law Reform. University of Michigan Law School 20, no. 4 (1987): 1055–88; Robinson, “Organs

for Sale—An Analysis of Proposed Systems for Compensating Organ Providers.” 66.  Erik Malmqvist, “Kidney Sales and the Analogy with Dangerous Employment,” Health Care Analysis 23, no. 2 (June 2015): 116, https://doi.org/10.1007/s10728-013-0270-3. 67.  A. Rid et al., “Would You Sell a Kidney in a Regulated Kidney Market? Results of an Exploratory Study,” Journal of Medical Ethics 35, no. 9 (September 1, 2009): 558–64, https:// doi.org/10.1136/jme.2008.026856. 68.  I. Glenn Cohen, “Transplant Tourism: The Ethics and Regulation of International Markets for Organs,” The Journal of Law, Medicine & Ethics: A Journal of the American Society of Law, Medicine & Ethics 41, no. 1 (2013): 269–85, https:// doi.org/10.1111/jlme.12018; I. Glenn Cohen, “A Fuller Picture of Organ Markets,” The American Journal of Bioethics 14, no. 10 (September 17, 2014): 19–21, https://doi.org/10.1080 /15265161.2014.947787; Cohen, Patients with Passports. 69.  Erik Malmqvist, “Are Bans on Kidney Sales Unjustifiably Paternalistic?: Are Bans on Kidney Sales Unjustifiably Paternalistic?,” Bioethics 28, no. 3 (March 2014): 110–18, https://doi.org/10.1111/j.1467-8519.2012.01984.x. 70.  G. R. Dunstan, “The Ethics of Organ Donation,” British Medical Bulletin 53, no. 4 (January 1, 1997): 921–39; K. Greasley, “A Legal Market in Organs: The Problem of Exploitation,” Journal of Medical Ethics 40, no. 1 (January 1, 2014): 51–56, https://doi.org/10.1136/medethics-2012-100770; Hughes, “Constraint, Consent, and Well-Being in Human Kidney Sales.” 71.  Alan Wertheimer, Exploitation (Princeton, NJ: Princeton University Press, 1999). 72.  Julian Koplin, “Beyond Fair Benefits: Reconsidering Exploitation Arguments against Organ Markets,” Health Care Analysis, February 4, 2017, https://doi.org/10.1007 /s10728-017-0340-z. 73. Anya Adair and Stephen J. Wigmore, “Paid Organ Donation,” Annals of The Royal College of Surgeons of England 93, no. 3 (April 1, 2011): 188–92, https://doi .org/10.1308/147870811X565061; Gabriel M. Danovitch and Alan B. Leichtman, “Kidney Vending: The ‘Trojan Horse’ of Organ Transplantation,” Clinical Journal of the American Society of Nephrology 1, no. 6 (2006): 1133–35; Koplin, “Assessing the Likely Harms to Kidney Vendors in Regulated Organ Markets.” 74.  Cohen, “Transplant Tourism”; Goyal, “Economic and Health Consequences of Selling a Kidney in India.” 75. Turner, “Commercial Organ Transplantation in the Philippines.” 76.  Dworkin, “Market and Morals: The Case for Organ Sales.” 77.  Koplin, “Assessing the Likely Harms to Kidney Vendors in Regulated Organ Markets.” 78.  Koplin, “Assessing the Likely Harms to Kidney Vendors in Regulated Organ Markets.”

79.  Hippen, “All the More Reason: Why Julian Koplin Should Support a Trial of Incentives for Organ Donation”; Taylor, “Avoiding Harms to Kidney Vendors through Legal, Regulated Markets.” 80.  Hugh V. McLachlan, “Exploitation, Criminalization, and Pecuniary Trade in the Organs of Living People,” Journal of Bioethical Inquiry 18, no. 2 (July 2021): 229–41, https:// doi.org/10.1007/s11673-021-10091-6. 81.  Taylor, “Avoiding Harms to Kidney Vendors through Legal, Regulated Markets.” 82.  Richards, “Nephrarious Goings On: Kidney Sales and Moral Arguments.” 83.  Albertsen, “If the Price Is Right.” 84.  Richards, “Nephrarious Goings On: Kidney Sales and Moral Arguments,” 377. 85.  Richards, “Nephrarious Goings On: Kidney Sales and Moral Arguments,” 377. 86.  Simon Rippon, “Imposing Options on People in Poverty: The Harm of a Live Donor Organ Market,” Journal of Medical Ethics 40, no. 3 (March 2014): 145–50, https:// doi.org/10.1136/medethics-2011-100318; Julian Koplin, “Choice, Pressure and Markets in Kidneys,” Journal of Medical Ethics, November 4, 2017, https://doi.org/10.1136 /medethics-2017-104192; Debra Satz, Why Some Things Should Not Be for Sale: The Moral Limits of Markets (New York: Oxford University Press, 2010). 87.  Gerald Dworkin, “Is More Choice Better than Less?,” Midwest Studies in Philosophy 7, no. 1 (1982): 47–61. 88.  Lori B. Andrews, “My Body, My Property,” Hastings Center Report 16, no. 5 (1986): 28–38; Rothman et al., “The Bellagio Task Force Report on Transplantation, Bodily Integrity, and the International Traffic in Organs”; S. M. Rothman and D. J. Rothman, “The Hidden Cost of Organ Sale,” American Journal of Transplantation: Official Journal of the American Society of Transplantation and the American Society of Transplant Surgeons 6, no. 7 (July 2006): 1524–28, https://doi .org/10.1111/j.1600-6143.2006.01325.x; T. L. Zutlevics, “Markets and The Needy: Organ Sales or Aid?,” Journal of Applied Philosophy 18, no. 3 (January 1, 2001): 297–302, https://doi .org/10.1111/1468-5930.00196; Simon Rippon, “Organ Markets and Harms: A Reply to Dworkin, Radcliffe Richards and Walsh,” Journal of Medical Ethics 40, no. 3 (2014): 155–56; Rippon, “Imposing Options on People in Poverty.” 89.  Anonymous, “The Sale of Human Body Parts.” 90. Satz, Why Some Things Should Not Be for Sale. 91.  Richards, “Nephrarious Goings On: Kidney Sales and Moral Arguments.” 92.  G. Dworkin, “Organ Sales and Paternalism,” Journal of Medical Ethics 40, no. 3 (March 1, 2014): 151–52, https:// doi.org/10.1136/medethics-2012-100647; Luke Semrau, “The Best Argument against Kidney Sales Fails,” Journal of Medical Ethics 41, no. 6 (June 2015): 443–46, https://doi .org/10.1136/medethics-2014-102390.

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93.  Zümrüt Alpinar-Şencan, “Reconsidering Kantian Arguments against Organ Selling,” Medicine, Health Care and Philosophy 19, no. 1 (2016): 21–31; Zümrüt Alpinar-Sencana, “A Social Understanding of Dignity: A Promising Approach in the Organ Selling Debate,” vol. 149 (Bioethica Forum, CiteSeer, 2014); Zümrüt Alpınar-Şencan, “11. Selling Organs,” Ethical Challenges of Organ Transplantation: Current Debates and International Perspectives 3 (2021): 209; Pranlal Manga, “A Commercial Market for Organs? Why Not?,” Bioethics 1, no. 4 (October 1987): 321–38; Bob Brecher, “Organs for Transplant: Donation or Payment,” in Principles of Health Care Ethics, eds. Raanan Gillon and Ann Lloyd (Chichester, England; New York: John Wiley & Sons, 1994), 993; Barbro Björkman, “Why We Are Not Allowed to Sell That Which We Are Encouraged to Donate,” Cambridge Quarterly of Healthcare Ethics 15, no. 1 (January 2006), https://doi.org/10.1017/S0963180106060075; Thomas H. Murray, “Gifts of the Body and the Needs of Strangers,” Hastings Center Report 17, no. 2 (1987): 30–38; Ruth F. Chadwick, “The Market for Bodily Parts: Kant and Duties to Oneself,” Journal of Applied Philosophy 6, no. 2 (October 1, 1989): 129–40, https://doi.org/10.1111/j.1468-5930.1989. tb00385.x; Samuel J. Kerstein, “Kantian Condemnation of Commerce in Organs,” Kennedy Institute of Ethics Journal 19, no. 2 (2009): 147–69; Chadwick, “The Market for Bodily Parts: Kant and Duties to Oneself.” 94. Margaret Jane Radin, Contested Commodities (Cambridge, MA: Harvard University Press, 1996); S. Wilkinson, “Commodification Arguments for the Legal Prohibition of Organ Sale,” Health Care Analysis: HCA: Journal of Health

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Philosophy and Policy 8, no. 2 (2000): 189–201, https://doi .org/10.1023/A:1009454612900. 95. Vida Panitch, L. Chad Horne, and Department of Philosophy, Florida State University, “Commodification, Inequality, and Kidney Markets,” Social Theory and Practice 44, no. 1 (2018): 121–43, https://doi.org/10.5840/soctheorpract201812531.; Sterri, “Why States Should Buy Kidneys”; Erin and Harris, “A Monopsonistic Market: Or How to Buy and Sell Human Organs, Tissues and Cells Ethically”; Hansmann, “The Economics and Ethics of Markets for Human Organs.” 96.  Vida Panitch, “Liberalism, Commodification, and Justice,” Politics, Philosophy & Economics 19, no. 1 (February 2020): 62–82, https://doi.org/10.1177/1470594X19877653. 97. Robert M. Veatch, “Why Liberals Should Accept Financial Incentives for Organ Procurement,” Kennedy Institute of Ethics Journal 13, no. 1 (2003): 19–36. 98.  Eduardo Rivera-Lopez, “Organ Sales and Moral Distress,” Journal of Applied Philosophy 23, no. 1 (2006): 41–52. 99.  Beyond those just cited, other important justice-based approaches to the question are found in Satz, Why Some Things Should Not Be for Sale; Sandel, What Money Can’t Buy. Satz’s approach is, of course, relational. Sandel’s conception of justice is distributive but incomplete in important ways; see Andreas Albertsen, “Markets, Distributive Justice and Community: The Egalitarian Ethos of G. A. Cohen,” Political Research Quarterly 72, no. 2 (June 2019): 376–98, https:// doi.org/10.1177/1065912918791567. Note though, that the parts of the critique offered there arguably give too little room to Sandel’s commodification concern.

CHAPTER 17

Physician-Assisted Death Iain Brassington

A

ssisted dying is a topic of perennial interest to ethicists and to the wider public; it is also one of the most polarizing and one of the most intractable. Søren Holm has suggested that argumentation about physician-assisted dying (PAD) tends to take the form of the development and articulation of strategies to defend a particular position, rather than a disinterested pursuit of truth, so that “the philosopher knows the answer to the question, works hard to find the arguments that support that answer and discredit those arguments that do not, and then often reconstructs and presents the research process in the published paper as if it had been a dispassionate investigation of the question.”1 If Holm is correct, we may worry that anything we read about PAD is indicative of motivated reasoning, which is fallacious at best. We may find ourselves inclined to ditch the idea that debates about PAD could get anywhere, since everyone would be far more interested in fortifying their own trenches than in making a definitive advance.2 And yet we do not have to think that arguments about PAD are made in bad faith, or that disputes are only attritional. The ethicist’s presupposed answer is rather like the natural scientist’s working hypothesis, and both kinds of researcher assess evidence, empirical or argumentative, according to whether it fits with their prior assumptions; both would be capable

of abandoning those assumptions if the evidence required it. Both could be surprised by where their analysis takes them. The cushion that the ethicist has is that it is slightly easier to avoid having to publish null hypotheses. He can redraft his paper to make it look like his surprising conclusion was the most obvious thing in the world, or he can simply put it in the bottom drawer and move on to other things. Admittedly, in the natural sciences, there is a fact of the matter to be had that would obtain irrespective of whether anyone is there to find it. The idea of a fact of the matter in respect of PAD’s permissibility being harder to sustain,3 it may be tempting to think that there is no chance of meaningful “progress”: Toward what would we be progressing? Nevertheless, there is progress to be had. For one thing, it is still open to the ethicist to spot fallacious reasoning, and so to expunge poor arguments about the permissibility of PAD; and it is possible to show that something taken for granted is more complicated than it looks—and so, perhaps, to help make laws governing PAD more coherent, workable, or humane. For example, arguments about PAD often involve appeals to dignity; the philosopher can show the multiple senses of that word and can make an attempt to untangle them. For another, “progress” does not have to have an endpoint; we can chart the shifts in the mood and content of debates without thinking that there is anywhere specific that they are 185

going, rather as a geologist might chart the progress of the magnetic poles over time without believing that they will ever reach a terminus. Still: allowing that a moral fact about PAD’s permissibility is unlikely to be forthcoming, I shall not engage with that matter in this chapter. You will either think that PAD is permissible, or that it isn’t; a short chapter like this probably couldn’t persuade you to change your mind. What I shall try to do is to highlight a few areas of controversy; but I shall begin by considering what PAD is.

D EFINITION O F T E R MS By “physician-assisted dying,” I mean acts or omissions by a health care professional undertaken either with the intention of ending a patient’s life by medical means, or in the knowledge that they are links in a causal chain, the intended end of which is the death of the patient. The term covers active euthanasia, in which positive steps are taken to end life; passive euthanasia, in which life-sustaining treatment is removed or withheld in order that life should end; and assisted suicide, in which the means of suicide are procured for a person in order that they may be self-administered. Some accounts of passive euthanasia extend the term to cover all withholding of life-sustaining treatment, irrespective of any desire to end life. I have argued against the philosophical coherence of this elsewhere;4 and I shall limit myself here to considering instances in which a physician makes an intervention specifically to facilitate death. It is crucial that PAD be at the patient’s request: it excludes non-voluntary euthanasia, which describes ending the life of someone who has not indicated a desire to die, motivated by the belief that it would be better for that person. A physician might end an unconscious patient’s life because she believes that continued life once consciousness is restored would be burdensome (the possibility of which belief, feared by at least some disabled commentators, may arise from an unexamined prejudice that certain lives—e.g., those projected to be characterized by

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quadriplegia—may be less worth living5); the “Groningen Protocol,” tolerated by, though not formalized in, Dutch law, which allows medics to end the life of a severely ill infant in some cases of severe and uncontrollable suffering, also fits this model.6 But these would not be the cases of physician-assisted dying, so much as physician-instigated dying. Stipulating that the intention to end life is central to the definition of PAD generates a philosophical puzzle. Imagine that a patient decides that being kept alive with a ventilator is unbearably burdensome. Cognizant that it may be possible to wean her off the ventilator but that its sudden withdrawal would probably be fatal, she nevertheless insists that it be removed right away: she hopes to survive, but is willing to accept death if death comes.7 Granted certain standard intuitions about the right of competent patients to refuse treatment, we have a very powerful reason to withdraw the ventilator; and because, all else being equal, the physician’s intention is not to cause death but to accede to a refusal of treatment, it looks like this is not an instance of PAD. But now imagine that our patient asks for the ventilator to be withdrawn not even though she will die, but so that she may die. Would this count as a simple withdrawal of unwanted treatment, or as PAD? It could be either. Much will depend on whether the physician is willing—and whether it is possible— to accede to the withdrawal without adopting its motive. Certainly, he could tell himself that he was responding to her request to be removed from the machine, not to her desire to die. But people have mixed motives, and they may be opaque to themselves. It may not always be easy to say whether an action really is PAD. Or suppose that the patient is motivated by a desire to die but keeps this from the physician. Would it make sense to say that we are dealing with something that is PAD from her perspective but not from his? This hardly seems coherent. The point is this: before we can begin to address “traditional” ethical questions about rightness or wrongness, we are likely to have to confront questions about the very nature of the action we are evaluating. What, precisely, are we talking about?

R IGHTS TO A SSI STA NCE Let’s put those questions to one side. Suppose that we are satisfied that some procedure would be an instance of PAD by whatever criteria we prefer, and that PAD is permissible. From its being permissible, could we say that assistance in dying is a right? To have a right to something implies (negatively) that others may not impede your doing it, or (positively) that they ought to facilitate it. The permissibility of an action generally indicates the presence of a negative right, but it may not indicate any positive rights. So what rights attach to PAD, and whose rights are they? The first point to make is that permissible actions generally having negative rights attached to them is compatible with some having none. Suicide might be an example of this. Suppose that Alice is about to kill herself. We might think that this is permissible; but we might also think that Bob acts permissibly by intervening to stop her. We might even think that it would be impermissible not to intervene, at least until he is sure that death is her settled intention.8 Equally, it is at least formally possible for PAD to be permissible but for there to be no wrong in erecting barriers to it. That said, most people who think that PAD is permissible presumably think that there is at least a negative right attached to it. Could we go further and talk about a positive right to assistance? There are a few ways in which we might try to make the case for a positive right. We could make a claim about autonomy, saying that respect for autonomous persons requires that we help them end their lives as they see fit. However, while autonomy tells us what we may do to ourselves, all it offers about what we must do in respect of others is an outline of what we may not do to them (at least, without their permission). It does not mean that we must, or even necessarily that we may, assist in their autonomously chosen project.9 And so even if autonomy covers self-killing, that doesn’t generate any entitlement to assistance. The most we could say is that the principle of respect for autonomy gives people protection against involuntary, and potentially against non-voluntary, euthanasia. But since neither of those is PAD

to begin with, patient autonomy has little to tell us about PAD. Another candidate method to make the argument would be to focus on the right to life. A right to life implies a right to die; if it did not, it would not be a right to life so much as a requirement to live. But, again, while this may mean that there is a right to end one’s own life, it does not mean that there is a right to assistance in the project. A slightly more sophisticated strategy would be based in a claim about a principle of equity, requiring that nobody face arbitrary restrictions that others do not face on the exercise of their rights. If there is a right to end one’s own life, it is presumably a right that every rights-holder has. But some people do face arbitrary restrictions on the exercise of their rights. They may not have the physical capacity to kill themselves; they may not be reliant on life-sustaining treatment that could be withdrawn. Suicide for such people may require that they refuse food and water. This is an unpleasant, prolonged, and undignified death in its own right; yet inasmuch as that this would not be required of others, it would be inequitable. PAD for at least some people may therefore serve to ensure equity in respect of universal rights to end one’s own life. In passing, we may note that a concern for dignity may itself generate a reason to permit PAD for everyone, since human bodies can be very hardy, and suicide attempts may misfire; anyone may be vulnerable to surviving and facing the rest of their lives with medical consequences that make their lives even more burdensome. Better, we may think, to be able to call on the services of a professional. However, while concerns like these generate reasons for assistance, they do not quite show that there is a bankable moral right to it. We may recognize a reason to do any number of things, but this is compatible with recognizing a countervailing reason not to, including a bare unwillingness to participate in another’s death; Bob may empathize with Alice’s plight and her wish to die, but not be willing to help her, and it would be odd to think that he must. And since every possible other person might feel the same way, it would seem to follow

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that whatever “right” to assistance might be claimed by Alice would remain only formal at most: a moral right may have no practical significance. In short, it is hard to make out a bankable positive right to assistance. A concomitant of this is that a physician may have a moral right to assist, but no duty. To the extent that there are autonomy arguments to be found in debates about PAD, here—in respect of the physician’s freedom to choose whether or not to assist—is where they are most likely to be found. The question of whether PAD is permissible would be secondary to the question of whether there is anyone willing to provide it in the first place. If every person who could provide PAD decided that they would not do so, nobody would be wronged. Meanwhile, being forced to provide it may count as a moral wrong.

R IGHTS TO NO N- PA R T I CI PAT I O N What impact might this discussion of moral rights have on laws regulating PAD? It is reasonable to think that law ought at least to aspire to reflect moral rights and obligations, and when it comes to rights not to participate in PAD, this is by and large what we find. For example, §293(2) of the Dutch Criminal Code says that ending another’s life is not punishable provided certain conditions are met, but the Dutch government points out that there is no obligation to grant a request for euthanasia.10 Likewise, §241.2 of the Canadian Criminal Code states that a person may receive medical assistance in dying provided that criteria concerning residence, age, and the presence of a “grievous and irremediable medical condition,” voluntariness, and consent are satisfied; this too is compatible with a right of non-participation. In this respect, the law in Ontario is interesting, since it seems to endorse something a bit more hardedged than we find in the Canadian federal law to which it is subordinate. The background here is that although the College of Physicians and Surgeons of Ontario (CPSO) recognizes that there are rights of non-participation in physician-assisted dying, it has stated that a practitioner who invokes those rights has a professional 188 

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duty to refer patients on to practitioners who are willing to provide assistance. Section 12(e) of the College’s policy on Medical Assistance in Dying states that physicians who object to assisting dying “must provide the patient with an effective referral.”11 The accompanying Advice to the Profession document explains that physicians make an effective referral when they take positive action to ensure the patient is connected in a timely manner to a non-objecting, available, and accessible physicians [sic], other-health-care [sic] professional, or agency that provides the service or connects the patient directly with a health-care professional who does.12 Though physicians need not participate in assisted dying directly, they must facilitate access to it. Such a policy is not without its detractors. In 2018 a group of Christian physicians challenged the CPSO’s policy in the Ontario Superior Court of Justice, arguing that it was unconstitutional. The nub of the claim was that the effective referral policy would require complicity in an action to which they objected, and that the religious beliefs underpinning their objection were protected under the Canadian Charter of Rights and Freedoms.13 Their claim was entirely and unanimously rejected by the Bench. The decision was upheld at appeal, where it was acknowledged that while the CPSO’s policy did infringe on Article 2(a) rights to freedom of conscience and religion, this was not unconstitutional, because those rights are subject to reasonable limits demonstrably justifiable in a free and democratic society, per Article 1.14 The implications of this decision are worth stating explicitly: as far as the CPSO is concerned, assistance in dying is a part of medical care, and as such—provided eligibility criteria are met—it is an entitlement for anyone who is entitled to medical care. To refuse an effective referral is therefore to violate a person’s right to medical care. While medics may opt out of delivering the coup de grâce, they may not dissociate themselves entirely from the delivery of PAD. Ontarian law has lent its approval to this position.

Physician-assisted dying is accordingly not just permitted but something to which patients have a nontrivial and bankable expectation. Some medical personnel may insist that this ruling allowed the CPSO to force them to act against their consciences; but the Court was having none of that: there is, Strathy CJO opined, “no common law, proprietary or constitutional right to practice medicine.”15 The entitlement to be referred to a medic willing to provide it may mean that in Ontario there is a legal right to medical assistance in dying. Still: whatever legal rights lawmakers or judges may create or recognize, they cannot create moral rights, or recognize moral rights that are not there. Equally, even if Ontarian physicians have professional duties that may involve them at least indirectly in PAD, we would not be able to deduce that they have any corresponding moral duty. And, indeed, it may look as though Ontarian law is open to criticism on the grounds that it is antagonistic to personal autonomy and moral integrity. However, even that is not certain; could it speak, the law would likely deny that there is a genuine incompatibility between its position and our moral intuitions. Nobody is forced to become a physician; autonomy would be preserved in the freedom of agents to join or not to join that profession. The physician’s role having been adopted, and granting the proposition that PAD is a part of medical care, then to be expected to participate in it is no more a violation of autonomy than is being expected to ensure that one’s skills are up-to-date, or to wash one’s hands before performing surgery. If the burden of making an effective referral is too great for one’s conscience, one can always take one’s conscience to some other employer.16

TH E FUN C TIO N O F ME D I CI NE Such a line of argument does lead us to confront another question, though: Is PAD really a part of medical care? One line of response might be that assistance in dying cannot be a part of medicine because the first

rule of medicine is to do no harm, and death is the ultimate harmed state. But this is disputable: we might think that there are fates worse than death, and that death may be a welcome release for us from the harm of prolonged suffering. Even if death is a harmed state, it may not be the ultimate one. A rather more plausible way of thinking about the function of medicine is to say that it is fundamentally concerned with the relief or prevention of suffering arising from illness or injury. An account like this would be able to explain what it is that unites the cardiac surgeon, the psychiatrist, and the public health doctor; and it may help us make up our minds about PAD. If their suffering is intractable (or is likely to arise and to become intractable), then it is tempting to think that it is wholly compatible with medicine’s function to help a person to die, either by killing them or by facilitating suicide. On this line of argument, we may criticize laws that make occurrent suffering a criterion of eligibility for PAD for being somewhat brutal: better, surely, to be able to avoid suffering that one reasonably expects to be imminent than to let it begin. A doctor who refused to assist may, we might think, have misunderstood her role; at the very least, she should have chosen a specialism in which the chance of having to deal with this kind of suffering is minimized. But if the proper aim of medicine is to eliminate suffering and to minimize it when elimination is impossible, then continuous deep sedation (CDS) looks as though it would fit the bill. A patient rendered insensible would presumably not be suffering, and this state could presumably be maintained indefinitely. More, the principle that we should not kill where it is not necessary is fairly robust; because it does not involve killing, CDS looks as though it would be preferable. We might be inclined to think that there really is no need for laws to permit PAD, nor for physicians to wrestle with such laws or their consciences, since the good at the heart of medical practice that PAD is supposed to generate could be generated without it.17 Not everyone is persuaded by this line of thought.18 Still, a law that gives patients the right to request CDS was enacted in France in 2016;19 it was designed specifically to strike a balance between P hysician - A ssisted D eath 

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demands for assisted dying and a right recognized in French law for medical staff to maintain treatment in the face of what they deem to be unreasonable refusal. Arguments for CDS have limits, though. They take for granted that the avoidance of suffering is the whole of the medical enterprise; but this is not obviously the case, and neither is it necessarily the only thing that concerns patients. Importantly, concerns about dignity are also worth keeping in mind. It is hard to provide a precise definition of what dignity is or what it requires—but we do not need to be able to provide a precise definition of a word to acknowledge that it has currency in our linguistic and conceptual framework, and that it may be important. Dignity informs why hospitals have single-sex wards, and curtains around beds; the absence of these things would not cause suffering, but it would be undesirable all the same. Patients may think that CDS violates their dignity in a way that is intolerable. Sure, they may say, they will not know anything about their predicament once they are in it, but that is hardly the point: what matters is that they know now that they will spend the end of their natural lives vegetating, and that this is not acceptable. Such arguments reflect what Ronald Dworkin calls “critical interests.”20 And the fact that we take things like wills and funeral instructions seriously despite their not making any difference at all to the dead person serves to indicate that we tend to be perfectly at home with the idea of interests that persist even when we are not in a state to know whether they are being served. PAD may help protect a critical interest in dignity. And yet while it might be that physicians ought to strive to maintain dignity, it does not follow that maintaining dignity is an essential part of the physician’s role. By analogy, we might expect that judges will write clear and concise speeches; this does not commit us to the idea that linguistic deftness is an essential part of the judge’s role. A failure to maintain a patient’s dignity might mean that we think a little less of a doctor or a health system; but a doctor or a health system of which we think a little less would still be a doctor or a health system, just as a depressingly prolix judge is still a judge. Dignity is a desirable extra, not a fundamental. 190 

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It does not follow from this that PAD is improper. We could still say that it is desirable, and we might still say that people trained as physicians are in a position to provide a useful service as they see fit but insist that they would not strictly be acting as physicians in such circumstances. (Whether they would have to be trained physicians at all is a further question.)21 If that is correct, the CPSO may have overstepped its limits after all, since members refusing to do something that is not fundamental to the profession is hardly a professional matter.

WH O B E N E FI TS? A final question that is important to consider is: Who would be a candidate for PAD? I indicated a moment ago that a desire to avoid suffering may give us a reason to seek PAD, and a concern to avoid indignity may give us a reason to prefer that over CDS. But suffering can take many forms, and so if we think that PAD is a permissible way to avoid it, we perhaps ought to think that it is permissible for quite a wide range of people. An important consideration here is that not all suffering is associated with terminal illness; and so while the laws in many jurisdictions stipulate that candidates for PAD must be expected to die soon, such stipulations are open to challenge—and, to some extent, appear to be in retreat. An important development on this front can be seen in the development of Canadian law, where an Act relaxing the criteria for candidacy for PAD received Royal Assent in the spring of 2021. Under this law, the Criminal Code is modified in important ways. The criterion that a person’s death should be reasonably foreseeable was deleted. Perhaps more controversially, a sunset clause was added such that §241.2(2.1), which in its current form states that “a mental illness is not considered to be an illness, disease or disability” for the purposes of candidacy for assisted dying, would cease effect from March 2023. This opens the door to mental illness being considered grounds for PAD. One might wonder why mental illness ought, as a matter of principle, to be excluded from the list

of reasons why one might seek or provide PAD. It is certainly true that one would want a request for assistance to be made with a clear head, and that sometimes mental illness may militate against that; however, not all mental illness deprives the sufferer of the ability to make important decisions, and mental illness that has this effect some of the time does not necessarily have it all of the time. Even if as a matter of fact no person with a mental illness ever does satisfy us that they should be eligible for PAD, we could not deduce from that that they could not satisfy us.22 It may be that the suffering caused by mental illness is as much of a reason for PAD as is that caused by somatic illness. Finally, in the Netherlands, the MP Pia Dijkstra has made headlines by proposing a Bill that would, if passed, allow people access to PAD in the event that they felt that their life had run its natural course. If adopted (which seems unlikely) then such a measure would take PAD out of the medical context and put it into another one entirely, since whatever we may think about the proper function of medicine, dealing with world-weariness seems to be a bit of a push. Nevertheless, “not proper to medicine” would not mean “not proper”; and so opponents of such a move would have to be able to articulate a reason why a willing person should not seek assistance to end a life that simply no longer has much attraction for them, and why a willing physician ought not to assist.23

CO NCLUSION None of what I have said here is intended to lean one way or the other on the permissibility of PAD. As I said at the start of the chapter, there is little reason to think that any argumentative breakthrough will be made soon by supporters or opponents of the decriminalization or legalization of assisted dying. Neither have I considered whether there is an important moral difference between killing a person directly and simply providing them with the means to kill themselves. What I hope I have been able to do, though, is to have raised a couple of interesting points with which anyone who has an opinion on PAD probably

ought to engage. It’s not much, but if there is ever to be progress on the larger question, this sort of thing is important.

N OT E S 1.  S. Holm, “The Debate about Physician Assistance in Dying: 40 Years of Unrivalled Progress in Medical Ethics?,” Journal of Medical Ethics 41, no. 1 (2015): 40–43. 2. Similar concerns may be raised about almost any moral issue. However, some topics—such as PAD, abortion, and a handful of others—are notable for the passions that they raise, not least because commentators identify with them personally. Comparatively, little is at stake in discussions about, say, the nature of paternalism, in respect of which I would wager (based, I admit, on nothing more than introspection) that people are much more willing to change their positions radically. 3.  It can be done, but it would necessitate some fairly big theoretical and metaethical investments. 4.  I. Brassington, “What Passive Euthanasia Is,” BMC Medical Ethics 21, Art. 41 (2020). 5.  This is a worry nicely articulated by Shane Clifton: S. Clifton, “Disability and the Complexity of Choice in the Ethics of Abortion and Voluntary Euthanasia,” The Journal of Medicine and Philosophy, 46, no. 4 (2021): 431–50. 6.  E. Verhangen et al., “The Groningen Protocol— Euthanasia in Severely Ill Newborns,” New England Journal of Medicine 352, no. 10 (2005): 959–62. 7.  This scenario is based on the English case of Ms B v An NHS Hospital Trust [2002] EWHC 429 (Fam). 8. This is in line with a Millian concern to stop people crossing rickety bridges, at least until we are sure that they desire to fall into the river below (cf. J. S. Mill, “On Liberty,” in On Liberty and Other Essays [Oxford: Oxford World’s Classics, 1998]). For a thoroughgoing analysis of a right to be protected from suicide, see Jonathan Herring’s forthcoming The Right to be Protected from Committing Suicide (London: Hart, 2022). 9.  (In)famously, Kant thinks that the categorical imperative requires that we adopt others’ ends as our own (cf. I. Kant, Grounding for the Metaphysics of Morals [Indianapolis, IN: Hackett, 1993]); but since he thinks that the categorical imperative rules out suicide when life threatens more evil than satisfaction anyway (ibid., Ak 422), this is not a huge consideration in the present context. 10.  https://wetten.overheid.nl/BWBR0001854/202107-01#BoekTweede_TiteldeelXIX_Artikel293 (in Dutch); an unofficial English translation is available via https://www. jurbib.nl/15/05/2019/how-to-find-english-translations -of-dutch-law/. See also https://www.government.nl/top ics/euthanasia/is-euthanasia-allowed for a summary, all last accessed September 10, 2021. P hysician - A ssisted D eath 

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11.  https://www.cpso.on.ca/Physicians/Policies-Guid ance/Policies/Medical-Assistance-in-Dying, accessed September 10, 2021. 12.  https://www.cpso.on.ca/Physicians/Policies-Guid ance/Policies/Medical-Assistance-in-Dying/Advice-to-the -Profession-Medical-Assistance-in-Dyi, accessed September 10, 2021. 13.  The Christian Medical and Dental Society of Canada v. College of Physicians and Surgeons of Ontario, 2018, per J. Wilton-Siegel at 86. 14.  The Christian Medical and Dental Society of Canada v. College of Physicians and Surgeons of Ontario, 2019 ONCA 393. 15.  Ibid., at 187. 16.  See Udo Schuklenk’s chapter (chapter 8) in this volume for an analysis of conscientious objection and effective referral. 17. Cf. Washington v Glucksberg, 521 U.S. 702 (1997), per J. O’Connor at 736–38. 18. For a thorough and sceptical account of CDS, see K. Raus et al., “Is Continuous Sedation at the End of Life an Ethically Preferable Alternative to Physician-Assisted Suicide?,” The American Journal of Bioethics 11, no. 6 (2011): 32–40; cf. I. Brassington, “If Suicide Is Painless, Is Painlessness Suicide?,” The American Journal of Bioethics 11, no. 6 (2011): 54–55.

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19.  For a brief explanation, see https://solidarites-sante .gouv.fr/soins-et-maladies/prises-en-charge-specialisees /findevie/ameliorer-la-fin-de-vie-en-france/article/loi -fin-de-vie-du-2-fevrier-2016; see also https://bioethics .georgetown.edu/2016/01/new-french-law-creates-right -to-terminal-sedation/, both accessed September 10, 2021. The law is analyzed by Ruth Horn: see R. Horn, “The ‘French Exception’: The Right to Continuous Deep Sedation at the End of Life,” Journal of Medical Ethics 44, no. 3 (2017): 204–5. 20.  R. Dworkin, Life’s Dominion (New York: Vintage, 1994). 21.  See S. Hurst, and A. Mauron, “Assisted Suicide and Euthanasia in Switzerland: Allowing a Role for Non-Physicians,” British Medical Journal 326, no. 7383 (2003): 271–73. 22. A recent paper by Hane Maung considers the permissibility of psychiatric euthanasia in cases of borderline personality disorder, concluding that the criteria for permissibility are not that different from the criteria for permissibility in cases of somatic illness: see H. Maung, “Psychiatric Euthanasia and the Ontology of Mental Disorder,” Journal of Applied Philosophy 38, no. 1 (2021): 136–54. 23.  For an analysis of Dijkstra’s proposal, see T. Holzman, “The Final Act: An Ethical Analysis of Pia Dijkstra’s Euthanasia for a Completed Life,” Journal of Bioethical Inquiry 18, no. 1 (2021): 165–75.

CHAPTER 18

Interpretation and Medical Technologies Jan Kyrre Berg Olsen Friis

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ew developments within medicine take place at an incredible pace. Medical research is provided with improved and new technologies; procedures and methodologies are updated to keep the practitioner abreast with the developments; and new disciplines, or, rather, subdisciplines emerge. Technology and science are inseparable. Medicine has become a technoscience branching out into specialties defined by its technological modalities, for instance, in radiology by fMRI, CT, MRA, or PET scan.1 The idea we often have of the scientist—usually given to us by popular culture, history, and literature—a highly gifted individual stooping over a microscope in blissful solitude—is not the reality of today. Scientists are part of a group in which they jointly are practicing both the technical and theoretical aspects typical of their subdiscipline. The results are a collective achievement. Our trust in the sciences rests in how well the group of researchers manages to cooperate in researching and publishing. However, the obvious upside of scientific diversity, rational discourse, and exchange—of having multiple methodologies in play—is hampered by local disturbances caused by the subjectivity of the involved practitioners. Humans are not always rational even when they intend to be. Technologies are as good as humans make them, and their output as good as we understand them to be. Even within AI,

accuracy is measured up and against the best human practitioners performing the same task as the AI. In radiology, humans will always be involved during the analysis of radiological images. Then the radiologist dictates the findings, and the secretary transcribes them. In cardiology, the success of the surgery depends on the cardiologist’s ability to “read” the condition of the patient there and then when performing the surgery. These professionals do their utmost to do their best, but they do not always get it right. Mistakes are difficult to avoid because they are outside rational control. In the following chapter, there are several, what I deem to be, interrelated issues discussed. The chapter begins by characterizing the theory of science at the beginning of the twentieth century and for the next eighty years as preoccupied with methodology, and conversely, nowadays, the preoccupation is not with methodology but practices of science as institutionalized endeavors of the research group. The present focus for many philosophers, anthropologists, and sociologists of science is to understand and describe the dynamics of the group of individuals within the institution, its rules, social order, its commitments to ideas and notions of what constitutes good science. Oreskes,2 for instance, insists that the objectivity of science lies in its diversity of methods, of many perspectives, of educated discourse, and, finally, that objectivity is, after all, a communal consensus. 193

I concur with Oreskes and feminist philosophers of science on this point, but there is a problem concerning the consensus of objectivity. I too believe that objectivity is a result of an agreement among researchers that there is a plurality of methods and that there, normatively speaking, should indeed be a plurality of methods. However, there is a problem with talking in such broad terms. One discussion concerning methods, for instance, exemplified by Einstein’s 1905 paper,3 and by Gödel, and Wittgenstein, is that there is a limitation to what we can know. There is a limit to what we can perceive, and on this ground call truth of scientific as well as of existential experience and knowing. Knowledge can be relative, incomplete, and fallible, in sum, not all the facts of science are enough to secure our knowledge of the world. After a discussion of these limitations on human knowledge, I go on to demonstrate how these limitations have come to play an important yet disturbing part in the clinical practices of cardiology and radiology. What is characteristic of these practices is their special interpretative interplay with technology, what I term “techno-cognition.” Techno-cognition is twofold, (1) as extended cognition of the world through technologies, for example, giving us images or mediations of the world. Technologies interpret, that is, gives us those mediations in the specified way as programmed, therefore, techno-cognition is also (2) that we have to interpret mediations in order to understand the world beyond. Interpretation gives us data by applying the skill sets of the practitioner. The products, images, and other kinds of medical data, given or mediated by technology, are incomprehensible without specialist knowledge and skill sets. I go on to describe angioplasty and radiological image analysis. Conclusion after discussing these practices is that perfect certainty is not obtainable. Sense-perceptual information, observational information, and measurement data, in sum, all sorts of empirical data, all being probable—which also means with a probability of mistakes that are uncertain to some degree. The question remains, why do we trust sciences, even after seeing the limitations we have and the mistakes we make? 194 

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FR O M T H E U N WI S DO M O F S C I E N C E TO T H E DI V E R S I T Y O F S C I E N T I FI C P R AC T I C E Today we are no longer surprised about how fast scientific practices change. In the modern versions of theories of science, the credo is fallibility, relativity, inconclusiveness, randomness, and chance. These are opposed to the infatuation we in the West have had understanding knowledge as absolute and unchangeable. Not only do new medical insights, after periods of trial and empirical testing, already outdate yesterday’s insights. In addition, how we come up with ways of attaining and testing the insights have changed. It is the new and improved technologies that turn out to be the “game-changers.” Natural science research—including medical science practices—are indirect. This means that they can only deal with their subject matter as mediated4 by technology. Theories explaining mediated microscopic structures or mediated superclusters of galaxies define these sciences as empirical sciences. Empirical research is itself a result of long deliberations on methods and means, involving many researchers and other stakeholders in collaborations. Whatever takes place within research groups is the result of expectations, goals, interests, methods, and instrumentation—and how to communicate it. Science is an institutionalized art of inquiry, as Ernst Nagel has put it.5 During the past hundred years, our understanding of how science works and what constitutes knowledge has changed. To be a “theoretician of science” means you go about your business theoretically. Some are also combining theoretical research with empirical research, for instance, by observing scientists and physicians in their laboratories and clinics. The understanding of sciences has gone through a transformation, which began with an emphasis on method to today’s understanding of science as something practiced in research groups. This includes studying the dynamics of scientific cultural interchange; this also means studying exchanges of worldviews but also practicalities concerning their respective practices.

This is in itself a turn toward the empirical that is also a turn away from pure theorization. If we take a quick look back—at the beginning of the twentieth century, we find that logical empiricism or positivism affected the way physicians and other scientists’ perceived the life sciences. The influence of logical empiricism/positivism gained traction at the beginning of the twentieth century and lasted for seventy years in some areas, like in statistics, radiology, or psychiatry; the metaphysical influence even goes beyond this timeline. This means, for instance, committing to a set of beliefs like, for instance, having direct perceptual access to the world’s objects. It also means committing to only one universal method for all sciences alike. To have a strict empirical foundation for any theoretical construction means that its assumptions about the world, its hypothesis are tested by the universal method of “hypothetical deduction.” In Scandinavian countries like Norway and Denmark, during the 1990s, psychiatric wards still had psychiatrists practicing Skinnerian behaviorism. For example, and according to Arthur Koestler (although writing during the late 1960s), described the life sciences by what he termed The Pillars of Unwisdom. The influence of logical empiricism on the medical and life sciences are, according to Koestler: 1. Biological evolution is the result of random mutations preserved by natural selection. That mental evolution is the result of random tries preserved by reinforcements (rewards). 2. All organisms, including man, are essentially passive automata controlled by the environment, whose sole purpose in life is the reduction of tensions by adaptive responses. 3. The only scientific method worth that name is quantitative measurements; and 4. Consequently, those complex phenomena must be reduced to simple elements accessible to such treatment without undue worry whether the specific characteristics of a complex phenomenon, for instance, man, may be lost in the process.6 The important term here is methodology. It is accurate about what occupied the minds of philosophers

and scientists during this period. Philosophers of science were primarily fascinated with the scientific developments within physics, especially Einstein’s special and general relativity theories.7 We may perhaps also mention Sigmund Freud’s psychoanalysis and Ludwig Wittgenstein’s logical investigations, theories that spurred on the general scientific interest toward a view of the world, and of science and human beings that is free of superstition, of religious beliefs, of assumptions, and hearsay that cannot possibly be tested empirically or at least sensed in some way or another. In sum, the emphasis on the scientific method prompted scientists, philosophers, sociologists, physicians, and psychologists to reassess the limitations of human knowledge. What are these limitations? If we, for instance, look at the science of astronomy and that of the human mind, then we see, for instance, that Einstein’s “relativism” demonstrates how an observer’s location in space, relative to other observers and a moving object determines the observations of the moving object. Einstein concludes that visual perceptions are relative to other observers’ perceptions and the actual objective timing of the moving object.8 Freud on the other hand ventured deeper into the human mind. He exposed that dark unknown; that “force” determining consciousness and actions, namely the unconscious. He made it clear how little in control we humans are of the “powers of the unconscious” generating cognitions or forcing us to act in ways, we did not expect ourselves capable of acting, or creating that thought of which we now are conscious. One important epistemic problem that logical empiricism struggled with was the incompleteness of empirical knowledge.9 The theorem states: since the scope of truth is infinite, all-encompassing, and comprehensive, there will always be unanswerable questions (and unanswered questions), and whatever we may think—answers will always be incomplete. This meant that all knowledge—far from being absolute, actually is incomplete, and will always be incomplete. What it also means is whatever science claims as knowledge may be true today but not necessarily tomorrow, and all scientific knowledge is fallible. I nte r p r etation and M edical T echnolo g ies 

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For instance, arithmetic logic was incomplete since it must rest on improvable statements. This turned out to be especially important since the veracity of scientific methodology rests on logic and quantification. Interestingly, in 1914 a young Norbert Wiener had a paper published in the Journal of Philosophy, Psychology and Scientific Method, where he anticipated Gödel’s Theorem in a critique of Bertrand Russell’s attempt at proving the unshakable foundations of mathematical logic. Wiener wrote, “It appears to me unlikely that such an amplification of Mr. Russell’s set of postulates . . . would be possible. . . . It is in any case highly probable that we can get no certainty that is absolute in the propositions of logic and mathematics, at any rate in those that derive their validity from the postulates of logic.”10 Then there is the leap from Gödel’s Theorem to Wittgenstein’s Tractatus11—published the first time in 1921 as Logisch-Philosophische Abhandlung. This is a work of logic. It led the logical positivists, usually referred to as the Vienna Circle, to expel religion and all non-empirical beliefs and assumptions from rational discourse and, as it turns out, applying a conclusion stemming from a misunderstanding of Wittgenstein’s postulation: what we cannot speak of, that we must pass over in silence. Wittgenstein found the Vienna Circle’s application of his statement to miss the point since those things we cannot speak of are the most important. We, therefore, assume that Wittgenstein, and with a twist of Gödel’s incompleteness theorem, may have thought that all the facts of science and logic are not enough to understand the world’s meaning.12 Moreover, as Wittgenstein writes, “The freedom of the will consist in the impossibility of knowing actions that still lie in the future. We could know them if causality were an inner necessity . . . the truth of a proposition does not follow from the fact that it is self-evident to us, . . . its self-evidence in no way justifies our belief in its truth.”13 The rationality of the sciences lies in the scientific transparency, intersubjectivity, testability, and the mind’s openness to critiques, or so philosophers and scientists assumed it to be. What was wholly lacking from the discourses were “the social arrangements through which scientific understanding is developed 196 

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and through which cognitive authority of the specialist is exercised,” as Kathryn Payne Addelson put it.14 Let the takeaway from these reflections on our past hundred years of philosophy of science and scientific practice be that we have lost our naivete when it comes to what science can achieve of knowledge, how secure it is, and how trustworthy it is. Science today is a perpetual process of interacting practitioners from different fields (e.g., physics, engineering, chemistry, biology, and medicine) engulfed in what they believe or assume will generate new knowledge about a world of which one can only indirectly perceive. There is trust in the results because of interaction, communication, and sharing of results, of peers reviewing manuscripts before publication, of debating and correcting. However, we have no longer an absolute or blind trust in what science can do. Human cognition and human ability to know have built-in limitations. Now, if we put these ponderings aside, we shall resume our thoughts on what the practices of today are and how the limitations on individual knowing influence the result in two clinical practices.

P R AC T I C E S O F T E C H N O CO G N I T I O N I N R A DI O LO G Y A N D C A R DI O LO G Y Interpreting is what we humans do, and we do it all the time. In navigating our world spaces, we bring our understanding to other persons, through understanding, we transform perceivable objects into symbols and concepts, and events become information expressed through language. We never aim to understand because understanding is something we already are doing.15 We are who we are because of what we understand—because we implicitly understand what it means to be in the world. And as Heidegger states “Understanding is the precondition of interpretation.”16 The ability to be in a perpetual interpretative state is in our bodies, in our cells, in neuronal exchanges. Through medical training, the ability to bring understanding into every situation is a dynamic transformative activity. When repeated

regularly it becomes a skill—like, for instance, in radiology when it becomes honed through a specific routine to recognize specific patterns in, say, fMRIs. Radiologists and cardiologists share some of the same skills. They have much of the same training before specializing as cardiologists or radiologists. The cardiologist is dealing directly with the patient during the surgical procedure. Her instruments are the tubes, the ECG, the monitors above the patient in the operation theater; her experience and skills—her “interpretative toolkit”—that, in addition to all the other “instruments,” includes cooperative interpretation, which are interpretations offered by other surgeons standing by or aiding during the procedure. Here is a case. Early morning the surgeon on call receives a phone call from an ambulance treating a man in his sixties with a possible heart attack. The surgeon carefully monitors the electrocardiogram’s continuous stream of data—that is, as tactile and audio-visual media, these technologies are instrumental aids before and during the surgical procedure. The ECG is a “hermeneutic” technology in the sense that it suggests an “interpretation,” that is, a possible diagnosis stating “suspect of infarction (necrosis) of the heart.” The surgeon requisitions a helicopter to bring the patient to the hospital. Twenty minutes later the patient has arrived at the hospital and is on his way down to the operation theater. An angioplasty procedure is prepared to unblock the coronary arteries of the patient. Before the procedure begins, the patient receives pain medicine and relaxing medicine in addition to blood-thinning medicines to prevent a blood clot from forming. He is placed on a padded table, and the cardiologist inserts a flexible tube (catheter) into the artery on his right arm. Sometimes the catheter has to pass through arteries in the upper leg (groin) area. The cardiologist uses live X-ray pictures to guide the catheter up into the heart and its arteries—however, new MRI-guided balloon angioplasty of blockage of the aorta is being tried out to eliminate X-ray exposure.17 Liquid contrast, or “dye,” is injected to highlight the blood flow through the arteries. This helps the cardiologist to see blockages in the blood vessels

that lead to the heart. Thereafter, a wire inside the catheter is moved into and across the blockage. A balloon is pushed over the wire and into the blockage. The balloon is inflated. This opens the blocked vessel and restores proper blood flow to the heart. The patient should now be able to feel the pain dissipate. This will often be the end of the procedure. This is not always the case. In one of the cases, one patient could still report a high degree of pain in the chest and left arm after the angioplasty. This led the two cardiologists to go over the images once more, scrutinizing the live feed. Feeling uncertain the cardiologist calls a more experienced cardiologist. For a short while, the three cardiologists keep looking at the feed, and they finally identify the aorta as being much slimmer and with a narrowing area. The cardiologist, who had performed the angioplasty, suggests a bypass, which means they have to perform open-heart surgery with considerable risk for the patient. The more experienced cardiologist suggests inserting a “stent” instead, which they decide to do. This means that a wire mesh tube maneuvers a stent into the narrow area. The cardiologist inserts the stent—along with the balloon catheter. The artery expands when the balloon is inflated. Finally, with a stent in place, the artery stays open. The stent, usually coated with a drug, lowers the chance of the artery closing back up in the future. We see here that it is the tactile and visual that defines the interpretative skill activity during the procedure. When there is uncertainty, more experienced cardiologists are consulted and together they look at the live feed, as well as images that have been taken. The cardiologists discuss or negotiate the findings before a consensus is reached concerning the next procedure. They are all very aware that perfect certainty is unobtainable. The radiologist, on the other hand, very rarely sees his patients face-to-face. Radiologists are image-interpreting specialists. Having an eye for detail and a good memory is essential for interpreting radiological images. Radiology as a medical science-technical specialty divides into sub-units specializing in images from different modalities like X-ray, CT (computed tomography), MRA (magnetic resonance I nte r p r etation and M edical T echnolo g ies 

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angiography), PET (positron emission tomography), or MRI (magnetic resonance imaging). To operate the PACS (picture archiving and communication system) and RIS (Radiology Information System),18 interpreting images from modalities like PET or CT demands a wide variety of cognitive approaches, epistemologies, and practices. This plurality of epistemic difference challenges notions like, for example, that scientific knowledge is about the world as it is in itself, that it is objective. As it turns out, mistakes are indivertible, and this challenges the veracity of medical diagnosis based on human image interpretation because cognitions from “data” obtained from sense perceptions rest on fragmentary or insufficient perceptual detail due to many factors, like the stress of the situation, or the temporality of perceptual processing, or technological artifacts.19 A radiologist begins his day going through a “stack” of patients that arrived at the hospital the previous day and evening. His workstation is the PACS consisting of two computer screens, a keyboard, and a mouse. There is also a third computer screen. RIS is a software solution that informs the radiologists of each patient they treat. The computer screen in front of the radiologist mediates the actual images taken the day before or the same day; these are the images in need of interpretation. He uses the screen to his right to compare with older images of the same issue of the same patient. On his left is his RIS. The radiologist starts by reading the RIS. He retrieves the images. With the PACS technology, he is now able to manipulate the image to enhance qualities and contrast, this way patterns are easier to spot against the gray scale in the image. Then the radiologist applies his systematics. He should go through the image meticulously from, say, top to bottom, perceptually scrutinizing every detail. Sometimes this is not necessary since he spots the tumor or lesion immediately, or, since he is constantly short of time, skips the systematics and goes straight to the depicted area requested by the clinician. Often the radiologist has to interpret what exactly it is that the clinician wants him to look at. Radiologists and clinicians—relative to their specializations, typically use different technical jargon describing the 198 

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lesion or illness within the anatomy in question. Clinicians and radiologists, generally speaking, come from different medical cultures or practices. Sometimes, the clinician has difficulty describing what the radiologist should look for, which results in a description too vague for the radiologist to grasp directly, and that leads to a tentative interpretation. This is the situation where the radiologist needs to apply a thorough systematical approach to be sure he has covered the possibilities unspoken of in the communication from the clinician. The radiologist often shares the room with others working the same type of modality. Quite often, she will need assistance from others when uncertainty arises about the nature of the pattern.20 Images may always contain some sort of “information” that is hard to determine. It is then that the radiologist needs his colleagues and their “eyes” to decide on whether the interpretation is correct or not, thus, he asks his colleagues, “Do you see what I see?” It helps to have extra eyes on the case. However, even if there is consensus, they may have been mistaken. During the “reading” or description of the image, the radiologist also has to dictate findings. Dictating is an important tool in radiology. The dictation helps clinicians to decide on how to act on their patients. A radiologist dictates during his entire career, as much as 360,000 reports. Therefore, reports must be dictated clearly with names spelled out so that the transcriptionist does not have to research the patients’ data.21 Sloppy dictation routine is a factor in the occurrence of errors and misunderstandings between radiologists, transcriptionists, and subsequently also the referring clinicians. Another phenomenon of reporting is “hedging.” This phenomenon concerns the vagueness in the reporting about findings during image interpretation, in other words, it is when uncertainty dominates the particular reading that the radiologist decides to be vague about what exactly has been found, in other words, it is hard to ascertain what the report states precisely.22 The cause of hedging is the malpractice systems in various countries. Jha writes, “Radiologists exist because the information is imperfect, and clinicians do not like the imperfection. This means that when reading a CT scan for acute

appendicitis, instead of decreasing the uncertainty of its absence, we increase it, we are doing referring clinicians a disservice. When we say we ‘cannot rule out minimal early sub-clinical tip appendicitis,’ what we are saying is ‘we do not wish to share your risk. You’re on your own Jose.’ ”23 Now, returning to the actual interpretation phase. The important question is what creates uncertainty? The short answer is human bias and cognitive limitations.24 Therefore, we shall have a look at the cognitive aspect since all kinds of interpretative practice—that is, all medicine practice generates uncertainty. Cognitive bias is the problem in radiology and it occurs during visual image interpretation. Bias and perceptual illusions are tacitly presences during most interpretations.25 Cognitive bias in image interpretations occurs when the neural processes combine non-relevant information with the actual interpretation of radiological images. What subsequently appears in consciousness, as that which is “seen,” is dependent, on the one hand, on training and education, but also, on the other hand, the influence of the memory of the radiologist and how memory has been formed by living in and with other people, ideas, beliefs, in other words, in a culture. These are all important aspects in the formation of a person’s personality and memory. A person’s memory is never fixed—as carved in stone, on the contrary, it is in constant flux. Memory recontextualizes by tasks and contexts and is the only way a person achieves meaningfulness of the perceived world. The recontextualized memory of a radiologist is dynamically inter-connected or tapped into during neural inferences, for instance, transitive inferences, during visual search.26 If the memory of the radiologist does not contain the correct memory trace of the pattern existing in the image, the pattern identification the radiologist’s brain generates will be wrong. Other cognitive factors are affecting the cognitions of radiologists. One is, in particular, what we could term the “biologically predetermined design” of the human brain, namely, the human’s innate ability to perceive. The “design” of the human body and mind constitutes possibilities but also limitations for the human perception and determines, for instance,

the extent of how far, how small, and how detailed a person can “see.” How good we see is determined by the position of the eyes and the number of rods (to detect dim light) in the retina and cones (to detect colors), for instance, tigers have more of the cell called “rods” than humans, which enable the tiger to see much better than humans do during nighttime— when color vision is not useful. We believe we see the whole, when in reality we only see fractions. The neuroscientist David J. Linden has turned his back on traditional cognitivist neuroscience. For a cognitivist the human mind is computer-like, it computes one phenomenon at a time. Not so, says Linden, we can inhabit several complex, and even contradictory, cognitive and emotional states at the same time.27 Linden is now more in line with the competitor view of enactivism. Linden’s conviction is that sciences do not show us objective values, and there is no objective experience, no pure sensation. Our brains, he says, cannot measure the absolute value of anything. Everything we feel, think, experience, and perceive occurs in our minds because of our expectations, comparisons, and circumstances.28 This boils down to the fact that we spend an enormous amount of time predicting the future we are about to enter. In other words, humans project their understanding onto the world, and it does not always match—the drawing is not the landscape yet, we always must follow the drawing. Therefore, an important factor is the temporality of the mind determining the sequencing of the perceived. For instance, 0.3–0.5 seconds is the measured time the perceptual process takes from when light hits the 91 million rods and 4.5 million cones in the retina to the gestalt (e.g., that which we see) appears in consciousness, which means that consciousness is lagging behind the occurrences in the outer world. The brain creatively compensates the time lag by recontextualizing or making relevant memory or experience to the present situation at hand. Again, the gestalt is therefore not always the correct construction of what takes place. To put this into context, Lee, Nagy, Weaver, and Newman-Toker explain that “the retrospective error rate among radiologic examinations is approximately I nte r p r etation and M edical T echnolo g ies 

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30%, with real-time errors in daily radiology practice averaging 3–5%.”29 From a different perspective, we find that globally there are approximately 1 billion image studies annually, with a global annual error rate of 4 percent, which gives us approximately 40 million erroneous image interpretations annually.30 In medical image interpretation practices, cognitive mistakes usually happen when there are abnormalities in the image, which the radiologist does not see. These constitute 60–80 percent of all mistakes. There are also interperceptual mistakes. This is when the radiologist identifies an abnormality in the image but interprets it incorrectly. These mistakes constitute 20–40 percent.31 That there are differences in experience and systematics among practicing radiologists is also an important reason why radiologists make mistakes. In a study from 2014, researchers found that there was disagreement in 2.9 percent of fifty-eight studies, where there were as many as 388,123 CT scans taken, in other words, this disagreement concerns as many as 11,255 image examinations.32 These are obvious reasons why radiologists routinely discuss their results with each other. A well-practiced skill set is an important, if not the most important, factor preventing the radiologist from making mistakes. Skill is the result of years of training, that is, of interpreting specific images, of repetition until the skill of recognizing specific patterns becomes second nature, until it becomes an embodied skill applied during the interpretation of images. Cognition occurs before conscious reflection. Reflection may deepen and broaden the initial perception, but it cannot invent itself as perception or determination of the perceived. Identification of an abnormality occurs during the moment it is understood, and which is not the deliberative work of the analytic mind; instead, it is a sudden recognition. The decision cannot be otherwise because its identification is caused by the skill memory33 of the perceiver. The identity of the pattern gestalts in the mind of the perceiver as, for instance, a certain type of cancerous nodule in the lung of the patient. The indoctrination of specific patterns occurring in medical images is necessary for the radiologist to have a skill set that

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enables him to identify cancers. However, the application of skill goes beyond mere methodical interpretation. The skill-based cognition means that one extends one’s cognition to include the reading of data from instruments and technologies, which includes visio-motor activity from the perceiver—that is, using his body, his arms, and fingers to retrieve the data from the technology. A radiologist using PACS and RIS uses the computer mouse to explore the images systematically. There is some new research indicating that the peripersonal space, that is, the space immediately surrounding the body correlates with a specialized system in the brain.34 The extensive everyday experience of mouse-use results in durable extension of the auditory peripersonal space35 because the visiomotor experience seems to extend the audio-tactile integrative space around the hand, and this suggests that the space immediately around the body, due to tool use, dynamically relies on a multisensory system.36 In other words, the brain changes with tool use. Using the computer mouse extends auditory peripersonal space.37 I have mentioned Wittgenstein’s quest “can we know the truth”? What is significant with it, as I have tried to draw up in the previous pages, are the limitations he draws up for our scientific practices depending on human interpretation both to diagnose and to treat patients. These are the limitations concerning the factuality of what we perceive and of what we can perceive, which is limiting how far human knowledge can reach. The question is not how we cognitively can fix this epistemic issue of faulty interpretations. Interpretation is unfortunately inadequate as a probe into the subject matter of science—as far as science is descriptions and calculations based upon measurements, accuracy, and precision. Humans are not equipped to interpret with precision; we are at our best, producing approximations. The question is rather: Why is it that we, despite cognitive limitations and the unavoidable bias in medical practices—and other scientific disciplines applying perceptual information and interpretations, still trust science?

EX TE NDING T H E TECHN O-COG NI T I V E R E ACH Perhaps an answer is possible when understanding that sciences—when realizing the shortcomings of human thinking—can redirect thought to new constructive possibilities given by the affordances—here technological—that have arisen in society. Technologies are affordances for an extended cognition of that which we want to investigate. Let us take a closer look at what this means. Common to both cardiology and radiology is cognition, not only as embodied38 but also as extended,39 that is, it becomes extended by the use of technologies to aid interpretations during surgery or image description. Extending cognition means that not only are we through play or technology use influencing the way our cognition enacts bodily and thus also changing the brain, it means that extending the mind presupposes an alignment of body–mind–technology interaction operating the technology. This optimizes the function that is the “extended mind.” The hand that moves the computer mouse determines the task. Thus, we can claim that cognition is an ongoing activity that emanates from the brain, body, and environment: cognitions are interactions between the physiological, neural, and technological. In addition, agreeing with Bassolino,40 Gallagher states that human bodily processes shape and contribute to the constitution of consciousness and cognition.41 Specifically, biological aspects like organismic and emotion regulation of the entire body have a durable effect on cognition, and as Noë also stresses,42 so do processes of sensorimotor coupling between organism and environment. Gallagher also claims that the idea of extended mind must include social and cultural processes.43 Cognition does not only happen in the head. Cognitions should be aided by resources that are reliably available and typically involved (e.g., technologies), automatically endorsed and trustworthy, and easily accessible.44 When we move the computer mouse, it is the moving of the computer mouse that extends our bodily musculature across the mouse and from

the mouse; the signals of the mouse activated by the hand and fingers enter the computer. I do not extend my brain by using the computer mouse, according to Gallagher, but I extend the cognitive process.45 These extensions transform neural and mental processes in that these processes extend into their externalizations as we engage with them, as Bassolino et al. document.46 What constitutes cognition as cognition is its interpretative character. We engage in producing meaning for ourselves. Cognition understood here as an interpretation of images and tactile movements of a computer mouse or tube inserted in a patient’s aorta, is neither description nor procedure but more like an event. This “event” is, when a pattern gestalts in consciousness, among all the myriad neural processes, and phenomenologically speaking, a sudden happening. The pattern that identifies the existence of a nodule in the lung simply emerges in conscious awareness during the radiologist’s handling of the PACS system and visual gaze at the image. The radiologist’s cognition of the pattern and subsequent identification of the nodule rest on his skill memory. His cognition of it just happens, not purely as a product of rational thought processes, but resulting from long training of getting to know the variations under which the nodule may camouflage itself in the gray scale, as her attunes to the handling of the technology, to the image and its mediations. Likewise, when the cardiologist is trying to fit a tube into a patient’s artery, she is using tactile, visual, and audible perceptions, to navigate her way into the heart, where she will insert a small balloon and remove plaque blocking the bloodstream. There is systematics at the base of his practice, yet her actual cognitions are attuned and contextualized skill memory. She is attuning to obstacles (e.g., curving of arteries) during the procedure. Her mind–body–brain has to coordinate. Her fingers, arm, and his tactile sensing are fine-tuned. Her dialogue with the patient, her visual awareness looking at the live feed, coordinates with her skill memory providing the how-to-proceed. In short, her mind and body adjusting to the particularities of the perceived condition—processes both

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before and simultaneous with conscious thought, as well as before being consciously aware of the movements of her hand adjusting to the feel perceived by the palm of his hand, his fingers readjusting his grip. Her cognitions are embodied; she attunes to and acts through her fingertips, so to speak. Hence, the why and how of the surgery are subconsciously taken care of through his tactile perception and bodily enactments of adjusting to the affordances that crucially are involved and determining the fate of the patient. Applying skills is an activity involving memory—it precedes consciousness and rational control, it is a remembering that just happens given the context or particularities of the situation and perception.

TECHN O-COG NI T I O N A ND TH E N ORMAT I V I T Y O F T RU ST The question of why we should trust the medical sciences has an answer in the view, shared by philosophers, sociologists, anthropologists, and historians of science alike, and defended by Oreskes,47 that epistemic diversity is a necessity for obtaining objective knowledge. Science is diversity, and diversity generates peer control and negotiation—there is strength in diversity of methods, in the cultures and communities of scientists. However, a pill that may be too large to swallow for many is that consensus has taken the place of objectivity (understood as “truth to nature” as nature is in itself) even in specific instances where scientific interpretations (technological and human), influenced as these are by the cultural diversity, may cause confusion and mistakes. Throughout the modern history of medical practice, as exemplified by radiology and cardiology, the most salient ethical values implicated are “doing good,” “preventing harm,” and “establishing trust.” Pursuit of a cognitive fix for the perceptual interpretation of radiological images of course has an epistemological dimension, yet what drives the medical professional is doing good, doing right, and always to cure. This is the unsaid morality of the medical professional. Likewise, with “trust.” We trust despite mistakes, we trust medical doctors and in the research 202 

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of medicine and health, disciplines we sense aim for the good, to do their utmost to make medicines better, safer, and more reliable. We tend to believe in the progress of science toward increasingly greater certainty and precision in identifying illnesses. In other words, our common trust in sciences—and medical science—is intuitive, not empirical. Therefore, the call is out for a new philosophy of science, “A normative Philosophy of Science today addresses the issue of trust and the place of science in society. Why do people trust or distrust science? How do they trust? Do they trust the authority of scientists? Do they rely on their reputations? How is science constructed collectively? What are the reliable inferences that may be drawn collectively?”48 These questions have led the Allea initiative—a group of researchers reporting on trust in science—to point toward the possibility that “the philosophical sub-field of social epistemology is particularly promising in this perspective.” The promising perspective here comes from the efforts to tackle questions concerning the collective dimension of knowledge and its social responsibilities as well as defining what it means to trust in science, within the scientific community, and between scientists and citizens. They state, “Further efforts should be made in this direction to provide an encompassing normative framework of trust in science.”49 Despite the efforts to enhance imaging technologies and to come up with standardizations to render the interpretations universally more reliable, the global error rate in radiology still is 4 percent, and many people are misdiagnosed or not diagnosed at all every year. Every year people still die during surgery due to technological or human error. Since human cognition cannot improve beyond its perceptual and neural limitations, since humans cannot transcend subjectivity, a different kind of aid, a new kind of technology may improve the situation, and give reason to trust.

N OT E S 1.  Methodology: I draw on empirical investigations of two medical practices in this chapter besides theory. The

practice of angioplasty surgery and the practice of radiological image analysis. These empirical approaches are from two different ethnographic-like fieldwork occasions in 2015 and 2014. In the first practice, angioplasty surgery, I was kindly included among the staff to observe and interview cardiologists over a few weeks at the National Hospital in Copenhagen, Denmark. In the other, at the Radiology Department at Bispebjerg Hospital, I had the great pleasure of engaging in conversations, conducting interviews and observation studies of the most accommodating of radiologists and radiology technicians, participating in their meetings, all over several weeks. Such empirical engagement is necessary to grasp the many intertwined epistemic-cultural nuances. 2.  N. Oreskes, Why Trust Science? (Oxford and Princeton, NJ: Princeton University Press, 2019). 3.  A. Einstein, “Zur Elektrodynamik bewegter Körper,” Annalen der Physik 17 (1905): 891 (English translation: On the Electrodynamics of Moving Bodies by George Barker Jeffery and Wilfrid Perrett, 1923). 4.  Mediation means “given to us by the medium of a technology”—the technology is the medium, and, for instance, the image (X-ray image) is a mediation of the bone it depicts. 5. E. Nagel, The Structure of Science—Problems in the Logic of Scientific Explanation (Hackett Publishing Company, 1979). 6.  A. Koestler, The Ghost in the Machine (Arkana, 1967), 5. 7.  Einstein, “Zur Elektrodynamik bewegter Körper.” 8. Ibid. 9.  K. Gödel, “On Formally Undecidable Propositions of Principia Mathematica and Related Systems I, 1931,” in Martin Davis, Engines of Logic: Mathematics and the Origin of the Computer (New York: W. W. Norton & Company, 2000). 10.  F. Conway and J. Siegelman, Dark Hero of The Information Age—I Search of Norbert Wiener The Father of Cybernetics (Basic Books, 2005), 33. 11.  L. Wittgenstein, Tractatus Logico-Philosophicus (Routledge & Kegan Paul Ltd., 1961). 12.  A. Doxiadis and C. H.Papadimitriou, Logicomix. An Epic Search for Truth (Bloomsbury, 2009), 258–59. 13. Wittgenstein, Tractatus Logico-Philosophicus, 39. 14.  K. P. Addelson, “The Man of Professional Wisdom,” in Discovering Reality: Feminist Perspectives on Epistemology, Metaphysics, Methodology, and Philosophy of Science, eds. Sandra Harding and Merrill B. Hintikka (Dordrecht, The Netherlands: D. Reidel Publishing Company, 1983), 166. 15.  J. K. B. O. Friis, “Review of ‘Ian Heywood and Barry Sandywell (eds.). Interpreting Visual Culture. Explorations in the Hermeneutics of the Visual. Routledge: London and New York. 1999.’ 268 pages,” AI & Society (September 2020). 16.  M. Heidegger, Being and Time (John Wiley and Sons Ltd., 1978); N. Davey, “The Hermeneutic of Seeing,” in Interpreting Visual Culture. Explorations in the Hermeneutics

of the Visual, eds. I. Heywood and B. Sandywell (Routledge, 1999), 5. 17. J. J. Krueger et al., “Magnetic Resonance Imaging– Guided Balloon Angioplasty of Coarctation of the Aorta: A Pilot Study,” Circulation 113, no. 8 (February 28, 2006): 1093–100. 18.  PACS is the computer program used to study present and earlier radiological images of a patient and is integrated with the radiology information system (RIS), which is a computerized database used to store, manipulate, and distribute patient data and imagery (http://www.medi co-eng.com/en/products.php?id=71). 19.  Artifacts are disturbances generated by the technology itself and contribute to mistakes. 20.  For instance, what the radiologist perceives may be a technological artifact, that is, a “pattern” in the image that is due to noise or something else but originating in the technology and not because of something depicted in the body of the patient. 21. B. Brooks, “Seven Steps to Improving Radiologist Dictation,” Radiology Today 9, no. 16 (2008): 9. 22. S. Audi, D. Pencharz, and T. Wagner, “Behind the Hedges: How to Convey Uncertainty in Imaging Reports,” Clinical Radiology 76, no. 2 (2021): 84–87. 23. S. Jha, “It’s Time for Radiologists to Stop Hedging,” KevinMD.com, 2015, https://www.kevinmd.com/ blog/2015/06/its-time-for-radiologists-to-stop-hedging .html. 24.  See also Mayli Mertens’ chapter, chapter 10, “Bias in Medicine,” in this book. 25.  H. L. Kundel, “History of Research in Medical Image Perception,” American College of Radiology 3 (2006): 402–8; H. L. Kundel, “Visual Cues in the Interpretation of Medical Images,” Journal of Clinical Neurophysiology 7, no. 4 (October 1990): 472–83; H. L. Kundel, “Images, Image Quality, and Observer Performance,” Radiology 132 (1979): 265–71; E. A. Krupinski, “The Role of Perception in Imaging: Past and Future,” Seminars in Nuclear Medicine 41, no. 6 (2011): 392–400; E. A. Krupinski et al., “Key Issues for Image Perception Research,” Radiology 209 (1998): 611–12; D. J. Manning, A. Gale, and E. A. Krupinski, “Perception Research in Medical Imaging,” British Journal of Radiology 78 (2005): 683–85; and D. Sabih et al., “Image Perception and Interpretation of Abnormalities: Can We Believe Our Eyes? Can We Do Something about It? Insights Imaging 2, no. 1 (2011): 47–55. 26. S. Heckers et al., “Hippocampal Activation during Transitive Inference in Humans,” Hippocampus 14 (2004): 153–62; J. M. Frank, R. C. O’Reilly, and T. Curran, “When Memory Fails. Intuition Reigns. Midazolam Enhances Implicit Inference in Humans,” Psychological Science 17, no. 8 (2006). 27.  D. J. Linden, “A Neuroscientist Prepares for Death,” The Atlantic, December 30, 2021. 28. Ibid.

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29.  C. S. Lee et al., “Cognitive and System Factors Contributing to Diagnostic Errors in Radiology,” American Journal of Roentgenology 201, no. 3 (September 2013). 30. A. P. Brady, “Error and Discrepancy in Radiology: Inevitable or Avoidable?,” Insights Imaging 8, no. 1 (February 2017): 171–82. 31.  J. N. Itri and S. H. Patel, “Heuristics and Cognitive Error in Medical Imaging,” American Journal of Roentgenology 210, no. 5 (2018): 1095–105; see also L. P. Busby, J. L. Courtier, C. M. Glastonbury, “Bias in Radiology: The How and Why of Misses and Misinterpretations,” RadioGraphics 38 (2018); and L. L. Leape, “Error in Medicine,” JAMA 272, no. 23 (1994): 1851–57. 32.  M. Z. Wu et al., “CT in Adults: Systematic Review and Meta-Analysis of Interpretation Discrepancy Rates,” Radiology 270, no. 3 (2014): 717–35. 33.  Skill memory, for instance, is bicycling—it takes time to learn and eventually master bicycling. When you do master it, it has become a skill. Now your long-term memory enables you to activate the skill every time you need to, without having to think about how to do it. 34.  M. Bassolino, et al., “Everyday Use of the Computer Mouse Extends Peripersonal Space Representation,” Neuropsychologia 48 (2010): 803–11, esp. 807. 35.  “Peripersonal space (PPS) is defined as the space surrounding the body where we can reach or be reached by external entities, including objects or other individuals” (Frontiers: Peripersonal Space and Bodily Self-Consciousness, https://www.frontiersin.org/articles/586605). 36. Using several sensory channels during the interaction, for example, text, video, vision, sound. 37. Bassolino et al., “Everyday Use of the Computer Mouse Extends Peripersonal Space Representation,” 810. 38. “Embodied cognition is an approach to cognition that has roots in motor behavior. This approach emphasizes

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that cognition typically involves acting with a physical body on an environment in which that body is immersed” (see S. Schneegans, and G. Schöner, “Dynamic Field Theory as a Framework for Understanding Embodied Cognition,” Handbook of Cognitive Science [Elsevier, 2008]). 39.  The Extended Mind by Clark and Chalmers conveys the idea that technologies within the environment are applied as functional extensions of the mind. They believe there is no real separation between the mind, the body, and the environment. Hence, external objects play an important role in cogitating the world. Thus, the mind extends into the physical world; see A. Clark and D. J. Chalmers, “The Extended Mind,” Analysis 58, no. 1 (January 1998): 7–19. 40. Bassolino et al., “Everyday Use of the Computer Mouse Extends Peripersonal Space Representation.” 41.  S. Gallagher, “Interpretations of Embodied Cognition,” in The Implications of Embodiment: Cognition and Communication, eds. W. Tschacher and C. Bergomi (Exeter, UK: Imprint Academic), 66. 42. A. Noë, Action in Perception (Cambridge: The MIT Press, 2004). 43.  S. Gallagher, “The Overextended Mind,” Versus: Quaderni di studi semiotici (2011). 44. Ibid. 45.  Ibid., 8. 46. Bassolino et al., “Everyday Use of the Computer Mouse Extends Peripersonal Space Representation.” 47. Oreskes, Why Trust Science? 48.  ALLEA—All European Academies, “Trust Within Science: Dynamics and Norms of Knowledge Production,” 2019, Discussion Paper #2—chaired by Baroness O’Neill and Professor Ed Noort, https://www.ria.ie/sites/default /files/trust-within-science-allea-discussion-paper-2.pdf. 49. Ibid.

CHAPTER 19

Disability Melinda C. Hall

D

isability is frequently thought to refer merely to facts about the body. This deflationary perspective, dominant in the field of philosophy, further assumes a negative valence. Specifically, disability is framed as a description of a person’s unfortunate departure from species-typical functioning.1 This understanding of disability, which defines it as bodily or mental limitation, is known as the medical model of disability. Where the medical model is thought insufficient, new definitions are offered by philosophers; but these revised models tend to tighten the premise that disability is always and only negative and apolitical.2 For example, some argue for a model by which disability refers to a person’s lack of well-being, once social and political causes for decreased well-being are set aside.3 Given these common philosophical presumptions and the theoretical models of disability to which those presumptions give rise, one can easily perceive how broader philosophical claims about disability are speedily dissolved as nonsense.

For example, if disability is merely a reflection of natural disadvantage, the claim that incorporating political analysis of disability would enrich feminist theory would not be plausible.4 In another example, the claim that disability as a product of power relations would not be acceptable.5 Taken as a question of physical well-being, disability is referred—as a problem in need of a solution— to applied ethics contexts. It is thus treated as a niche concern for specialized subfields of ethics that are believed to be less philosophically substantive. This has made it difficult to philosophize about disability; one must do so against significant momentum, in the form of the thought that disability is not of broader philosophical interest or significance. These crucial facts about the literature are partially explainable through the dominance of ableism, a system of power relations, which evaluates bodies and minds hierarchically based on socially constructed concepts of normality.6 Ableism is a powerful structure of oppression.7

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Bioethics, as the area of applied ethics to which questions about disability have been consigned, in turn regulates conceptions of disability and defines the wider reception of disability within philosophy. Disability is given over to the epistemic control of medical professionals, whose understanding, experiences, and attitudes about disability are taken more seriously than those held by disabled people.8 In this way, bioethics literature is firmly ensconced as the premier site for philosophical discussion of disability and is thus significantly intertwined with the social and political construction of disability. This entanglement, however, is made ironic by the ability of bioethics to cover its own tracks. Indeed, bioethics frequently frames disability as natural and politically neutral, found and diagnosed by the medical professionals. This is despite the role of the practice and subfield of bioethics in constructing disability and despite its role in the larger questions of politics and power that give rise to the treatment of disability as a problem to be solved.9 In this setting, not only is it very difficult to philosophize about disability, but it is also nearly impossible to philosophize about impairment, as the two are frequently treated interchangeably. Since its emergence, disability studies has aimed to object to the medical model by way of more nuanced models of disability, including the social model, and has directly opposed the values expressed in bioethics literature.10 Disability scholars have, for example, opposed the notion of normal functioning.11 Philosophers have recently challenged bioethicists more broadly to increase accountability to disabled people and to disavow bioethics’ eugenic history and embedded eugenic claims.12 With the emergence of philosophy of disability, a new arena of philosophical discourse, the need and desire to free discussion of disability from its confines within bioethics has been made plain.13 Meanwhile, interdisciplinary approaches called critical disability theory, or critical disability studies, continue to put serious pressure on merely medical perspectives of disability and disability’s treatment within bioethics.14 Disabled bioethicists and their allies push back against ableism in the discipline and in medical practice.15 Yet, within disability studies, scholars continue to argue that 206 

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non-deficiency models of disability lack “uptake” among health care professionals, although some shifts to non-deficiency thinking can be traced.16 Discussion of disability as one case study within the practice and subfield of bioethics must be done carefully to be effective. If such a treatment were offered quietly, one would contribute to the obfuscation of disability and its continued depoliticization. Moreover, such treatments, even when contextualized, risk legitimizing an unearned claim about what disability is—namely, that it is a matter for intervention and that medical professionals are the appropriate experts when it comes to disability. As Elizabeth Barnes argues, the prejudgment that disability counts as “bad difference” is a major obstacle to philosophizing accurately about disability, as it begs the crucial question of whether disability is bad in the first place.17 As Shelley Tremain argues, the treatment of disability as a bioethical issue is a key part of its discursive construction, and that treatment aids in actively covering over the political, social, and normative aspects of disability.18 Scholars working on disability argue that the philosophical consideration of disability should not be locked within or regulated by the subfield of bioethics. The inclusion of the present chapter as one case study within this Handbook, however, provides the necessary friction and opportunity to develop these opening remarks on the treatment of disability within the field of bioethics by laying bare elements of the construction of and treatment of disability within the context of bioethics. This is a necessary engagement for philosophizing about disability, given the unmistakable role of bioethics in the social and political determination of what disability is and what it is, and will be, like to be disabled.

DI S A B I L I T Y A N D H E A LT H C A R E DI S C R I M I N AT I O N Disabled people experience significant and lifethreatening barriers and discrimination in the space of the clinic.19 Disabled people are refused access to appropriate treatment,20 including organ transplantation;21

experience worse health outcomes;22 are misdiagnosed;23 are forcibly sterilized;24 and directly refused care, including life-saving care, through rationing schemes.25 These exclusions are systematic and predictable.26 Health care access for and related exclusions of disabled people are a central issue for bioethics. Unfortunately, problems like these are more frequently condoned in bioethics literature than decried. Consider the claim that, because medical resources are limited, triage or rationing based on disability is reasonable. Some bioethicists have argued that because we lack sufficient resources to meet needs more widely or universally, it is morally acceptable to discriminate among potential recipients of care based on potential well-being (e.g., disability status) post-intervention.27 Some endorse quality-adjusted life-years (QALYs) to determine the use of scarce resources.28 For Alan Williams, QALYs work because health can be approached from an objective, universal standard, individuals can evaluate health meaningfully, and it is possible to draw out principles from individual valuations in a manner that is politically and ethically acceptable.29 When using a quality-adjusted life-years measure, a year of healthy life expectancy is worth 1, but a year of unhealthy life expectancy is worth less than 1.30 It is suggested that this measure would allow us to recognize whether health care activity is beneficial and efficient.31 It is possible for a QALY to be negative; that is, for the quality of one’s life to be judged worse than being dead. Some bioethicists believe using QALYs to decide which group of people to treat is wrong. Indeed, John Harris has called this use “dangerous and indefensible.”32 For Harris, while one might use QALYs to decide what treatment to pursue for a particular individual, its use to allocate health care resources among persons would undermine the claim that “each person is as morally important as any other.”33 Against detractors like Harris,34 Williams reiterates the necessity to make decisions in the face of scarcity; he writes: “QALY is not a measure of people’s economic worth, but a measure of whatever aspects of people’s health-related quality of life they themselves value.”35 Ultimately, QALYs rely on measures of health and well-being that are fundamentally deleterious

for disabled people and for their dignity and safety within medical contexts.36 As Williams describes, such a measure can yield a negative evaluation—that is, a life not worth living.37 Sara Goering demonstrates that disabled people are not believed when they claim that, indeed, their lives are worth living; instead, bioethicists believe that disabled people are in denial or that they have lowered expectations.38 Because it is widely presumed that disability and a lack of well-being are related, the use of a well-being–based metric such as QALYs results in devaluing disabled people in resource allocation and treatment plans. Turning now to public policy and ethics guidelines, disabled bioethicists and their allies (among other scholars in bioethics) are outspoken in response to policies of rationing and resource allocation that discriminates against disabled people. During the Covid-19 pandemic, the alarm was sounded about such practices in the face of crisis, including the possibility that personal ventilators may be seized and reallocated when disabled people seek care during the pandemic.39 In response to emerging state and health system–wide guidelines during the pandemic, prominent disability activist Alice Wong, who uses a ventilator, writes: The debates on health care rationing unveil how our society devalues vulnerable populations. Draft guidelines from various states and health systems identified people with dementia, cancer, intellectual disabilities, and many other pre-existing conditions as those who will not benefit from treatment compared to younger, healthier, non-disabled people. . . . Everything is personal and political for me. I know people with cognitive and developmental disabilities. I use disposable briefs when needed and require total assistance with my personal care such as eating, dressing, and bathing. Were I to contract coronavirus, I imagine a doctor might read my chart, look at me, and think I’m a waste of their efforts and precious resources that never should have been in shortage to begin with. He might even take my ventilator for other D isability 

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patients who have a better shot at survival than me. All of these hard choices doctors have to make primarily hurt those hit hardest, not the people who present as worthy investments of scarce resources. Who gets to make these hard choices and who bears the brunt of them is a matter of inequality and discrimination toward protected classes.40 Wong clearly articulates the vulnerable and highly stigmatized position of a disabled person whose life is judged not worthy of investment in a pandemic setting. Calling disabled people into question by debating whether their lives are worth living is in no way limited to resource allocation and scarcity concerns. Indeed, this question, unfortunately, sits at the heart of bioethics itself.

D ISABILIT Y A ND L I V E S WO R TH LIVIN G Not only does bioethics literature frequently imply the view that disabled lives are not worth living; that view is also explicitly supported within the discipline. For instance, a group of bioethicists recently published an essay for the Monash Bioethics Review entitled “Can ‘eugenics’ be defended?”41 In the essay, the authors—including world-renowned bioethicist Peter Singer—contend that bioethics discourse is polarized and politicized by charges of “eugenics,” and that this is a problem. The authors wish for an opportunity to engage in arguments without them being labeled “eugenic” and therefore dismissed out of hand. However, the specific discussion they want to have regards whether eugenics, understood as a value-neutral concept outside of history, is permissible. Meanwhile, as disabled lawyer Harriet McBryde Johnson details, Singer’s philosophical view explicitly articulates an ethics of life and death by which people like Johnson should not live.42 For example, Singer embraces a “social ethic” that he feels is already endemic in approaches to the law and medical care—namely, that “some human lives are valued 208 

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while others are not.”43 Singer argues that killing is wrong when beings fear their own death, desire to go on living, desire a right to life, and make autonomous decisions as rational agents.44 For him, not all persons meet these standards, including some disabled people. Indeed, in his famous book Practical Ethics, Singer argues that parents should be permitted to kill disabled infants for this reason.45 Singer is not an outlier in the bioethics literature. For example, recently a bioethicist argued that there is a Kantian moral duty for people with dementia to commit suicide.46 Jeff McMahan, another prominent bioethicist, has similarly argued that killing some disabled people is permissible.47 Eva Kittay explains that McMahan promotes a theory of moral personhood that excludes a group of cognitively disabled persons who, by his own definition, lack “prudential unity relations” that allow them to have an interest in their own future.48 Lack of these prudential relations are, for McMahan, reason enough to consider some beings below the threshold of moral personhood. Kittay writes that for him: “Neither the death nor the killing of those falling below the threshold carries the same moral significance as the death or killing of ‘us,’ who are above the threshold.”49 Because disabled people fall below the threshold of moral personhood, the number of circumstances in which it is permissible to kill disabled people exceeds those in which we normally believe it is permissible to kill. Kittay, whose philosophical work focuses on disability, vehemently opposes these moves in bioethics. She reads McMahan’s work as “an indictment of a particular brand of bioethics.”50 Increasingly, scholars push back against ableist prejudice in bioethics scholarship. Joseph Stramondo argues that the discipline of bioethics must take seriously, and incorporate, the moral perception and reasoning of disabled people; this would improve bioethical deliberation, including, for example, about physician-assisted suicide.51 With Stephen Campbell, Stramondo argues against the assumption in bioethics that disability is bad for disabled people and offers alternative views of well-being; in turn, these alternative views can help bioethicists better deliberate about QALYs, rationing, and other issues.52 Similarly,

Alicia Ouellette argues for a model of disability-conscious bioethics; she seeks a way to reconcile bioethics principles and competing arguments stemming from the lived experience of disability and thereby mitigate disability bias in health care settings.53 Even while certain bioethicists work to better include disabled voices, perspectives, and arguments, disabled people are dying for lack of care. In July 2019, William J. Peace, an anthropologist, disability studies scholar, and disability rights activist, died. His death was a tragic consequence of health care inaccessibility. He theorized about health care inequity, and he clearly foresaw that his own death would be due to such inequity. Peace wrote directly about his experiences as a paraplegic using his blog, Bad Cripple.54 There, he regularly referred to the impact a bodily wound could have on him; indeed, he wrote about wounds dozens of times. In a post on Bad Cripple, written three months before he died, Bill wrote: For 40+ years I have known exactly how dangerous skin woes can be. I have always had a visceral fear of wounds and been exceedingly cautious. Even the most minor wound can send me into a tailspin of depression and fear because I know a minor wound can blossom into a life threatening wound in days. Sepsis can set in and one can die very quickly.55 Previously, in 2010, Peace encountered a physician who pressured him to forgo antibiotics when he had a severe, life-threatening wound. In response, he wrote a scholarly essay excavating the impact of stigma about disability in health care, including the context within which physician-assisted suicide is offered or pursued. Of his own response to that physician, Peace wrote: “I was emphatic. . . . I wanted to live.”56 On his blog, he wrote, “Selective empathy when disability and health care collide are a deadly force.”57 A member of the disability rights organization Not Dead Yet, Peace adamantly opposed physician-assisted suicide and argued that PAS denied the value of disabled people and their personhood.58 In writing of his encounter with the physician, he understood his life to be on the line.

In 2019, Peace developed a wound. Peace knew what he needed, writing on his blog: “The solution is obvious but unaffordable. A clinitron bed or air fluidized therapy would relieve all pressure.”59 The wound became life-threatening, and he did not receive adequate care. This was the scenario he had long anticipated. After a life spent in careful compliance with medical professionals, working to untangle the ableist prejudice that frequently made health care inaccessible to him, William Peace died of preventable sepsis. Patients face intersecting oppression in medical care, including racism60 and sexism61 along with disability. The negligent and discriminatory differential treatment disabled people face is a crucial and emergent issue for bioethics.62 Further, as in the case of William Peace’s 2010 encounter, physician-assisted suicide and other applications of medicine toward death implicate disabled people in pressurized clinical encounters, through stigma, and in theoretical discussions of what kinds of lives are worth living.63

DI S A B I L I T Y A N D M E DI C A L I N T E R V E N T I O N So far, this chapter has covered lack of and denial of access to health care among disabled people, or the asymmetries in health care such that disabled people do not receive the care they need. Yet, these health care asymmetries can also run the other direction. Indeed, medical interventions can also be asymmetrically applied to disabled people in such a way that disabled people receive care they do not need. Medical interventions are also theorized and applied in a putative bid to control whether disabled people exist. In fact, within the context of medicine and emerging technology, disability becomes a key site of ableist and even eugenic intervention. Disability as a focus for medical intervention, or even as an opportunity for human enhancement, occurs across a whole life and finds expression through reproductive technologies prior to life. Genetic testing and screening procedures, prenatal testing, and reproductive choice more generally are D isability 

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framed as a method to manage or prevent disability.64 Normalizing surgical interventions, including but not limited to facial and limb-lengthening surgeries for disabled people and genital surgery for intersex infants, are at the center of crucial dilemmas, pressures, and stigmatizing clinical encounters.65 Disabled people, throughout their lives, attempt to manage seeking medical care within what disability theorist Eli Clare calls “the ideology of the cure.”66 With this phrase, Clare points not just to encounters within the clinic but also to new and emerging biotechnologies, like CRISPR, which are commonly hailed as opportunities to eliminate disability in the future. Meanwhile, another example of intensive or uniquely applied interventions within the medical field is psychiatry. Psychiatric interventions yield involuntary commitment, coerced treatment, and are linked with policies of conservatorship, all of which impact disabled people. Unfortunately, “psychiatric consumer, survivor or ex-patient perspectives are not well-integrated into disability studies work and academic discourse more generally.”67 This means that growing interruptions in bioethics from disabled voices are not yet inclusive of these perspectives. Medical interventions to prevent, normalize, or otherwise intervene upon disabled lives are linked theoretically and practically to the health care access issues already explored; proponents of these interventions assume that disability is a problem to be solved and a circumstance to be avoided. Jeff McMahan and Julian Savulescu argue for the use of reproductive technology to prevent disability under the assumption that one should always select to have a child without disabilities.68 Savulescu’s argument articulates a reproductive obligation, procreative beneficence, for those having children. Procreative beneficence is the claim that one should have, of the children they can have, the child with the best possible chances at the best life.69 Savulescu’s argument yields an imperative that any fetus “marked” with a disability trait, or a trait associated with a lack of well-being, should be selected against using available reproductive technologies. Melinda Hall argues that this obligation is ableist and indeed threatens, rather than enhances, reproductive liberty, since it depends 210 

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on misapprehensions about what one might know about the potential well-being of a future child.70 Hall critiques Savulescu’s argument as part of a larger tradition of enhancement thinking in bioethics that creates responsibility for parents, particularly women, to create better babies.71 The use of reproductive technology for the purposes of selecting against disability is an example of a promoted use of medical resources in the context of disability. Another illustrative example of disability inviting intensive medical intervention, rather than being met with a lack of medical resources, is the practice of growth attenuation. The so-called Ashley Treatment is a set of medical interventions and surgical procedures undertaken to arrest the physical growth of a cognitively disabled child (including the removal of sexual organs to exclude the possibility of puberty). These actions were said to be undertaken in the initial case to ease care and social participation for the attenuated disabled person.72 In 2012 it was reported that this type of treatment is on the rise.73 Philosophers and bioethicists with a keen interest in disability justice have critiqued the practice.74 Kittay suggests that it is a failure of care for parents to seek to attenuate the body of their child rather than “creating a world for them to flourish.”75 S. Matthew Liao, Savulescu, and Mark Sheehan have argued that the use of growth hormones to inhibit growth may be justified, while the removal of sexual organs may not.76 In an inversion of Kittay’s claim, they further argue that, since resources are not adequate to the care of “Ashley,” the parents are justified in undertaking the treatment on the child’s behalf.77 William Peace offered a critical perspective on the treatment alongside parent Claire Roy; they say that while one might assume parents of disabled children are univocal in their acceptance of growth attenuation, that is not the case.78 For them, the issue is plain: “The reality remains that Ashley’s parents violated their daughter’s human rights because she is intellectually disabled.”79 Medical interventions in response to disability, including normalizing surgeries, growth attenuation, the use of emerging technologies in reproduction, and more, demand as much attention as the questions of health care access and resource

allocation covered in the previous section. For some, these interventions together demonstrate a larger bioethics perspective that is hostile to disabled lives. Rosemarie Garland-Thomson critiques “eugenic world-building” that involves ableist discrimination and eugenic perspectives on the possible uses of technology.80 She argues for a concept of fitness for the future by which disability should be conserved.81 Within the context of demographic studies, Rayna Rapp and Faye Ginsburg argue for visions of the future in which the presence of disabled people contributes to a habitable world. This is opposed, in their work, to the procedure of identifying disability in a bid to remove or control it through medical and technological means.82 Theorizing about the future in critical disability theory is a key intervention against ableist norms in bioethics.83

R EFR AMING D I SA B I L I T Y As noted earlier in this chapter, new approaches to defining disability are emerging in philosophy and in conversation with the interdisciplinary literature of critical disability theory (also called critical disability studies). These new approaches, together with key efforts from disabled bioethicists and their allies seeking to deepen and rework the theoretical and practical conversation about disability, can shift paradigms within bioethics to discussions of the larger political and social matters that bear on well-being and away from naturalized discussions of disability. To conclude this chapter, some examples of new theoretical perspectives on disability are covered. Alison Kafer offers an alternative perspective of disability she calls the “political/relational model.”84 She hopes to shift conversation away from “medical intervention or surgical normalization” and focus on “social change and political transformation.”85 While she does not seek to excise the role of medicine from the lives of disabled people, she does seek a shift in the current power differentials at play in the space of the clinic. She writes: “Medical representations, diagnoses, and treatments of bodily variation are imbued with ideological biases about what constitutes

normalcy and deviance.”86 While some may want “to be cured of chronic pain,” it is possible to seek treatment and to want “simultaneously” “to be identified and allied with disabled people.”87 Her work contextualizes disability politically and socially; she writes: “I am arguing for increased recognition of the political nature of a medical framing of disability.”88 Similarly, Rosemarie Garland-Thomson’s work on disability contextualizes it, focusing on its larger, and shifting, cultural significance. She argues that disability is a pervasive cultural concept, like gender, that is reflected in our language, institutions, and more.89 She aims to demonstrate that disabled people are symbolically exploited, functioning as “synecdoche” for non-normativity within culture.90 Garland-Thomson, in referring to a system by which both disability and ability are produced culturally and politically, endeavors to denaturalize disability.91 Meanwhile, Elizabeth Barnes also takes steps to politicize disability; she defines disability by saying that disability is what civil rights movements for disabled people focus on.92 Shelley Tremain offers a significant critique of work in bioethics mired within the medical model of disability. Not only does she challenge bioethics for its political role in a larger system of biopower, Tremain also articulates and defends a definition of disability that utterly resists the momentum in philosophy toward endorsing the premise that disability is natural.93 She writes: “The historicist and relativist feminist philosophy of disability that I articulate in what follows takes as the starting point of inquiry the assumption that disability is an apparatus of force relations, a product of human invention and intervention all the way down.”94 This argument makes the central question of disability a question of power that is thoroughly historical. Tremain argues that impairment is itself socially constructed as part of the larger set of power relations that disability is embedded within. This differentiates her work from trends in bioethics that assume impairment and disability are the same concept. It also differentiates her work from trends in disability studies that treat disability as “political” but leave impairment to the side as “natural.”95 Tremain’s approach would open D isability 

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the door to a broader metaphysics, epistemology, and politics of disability, among other avenues of treating disability philosophically.

CO NCLUSION The open-ended approaches to defining disability briefly explored here, and the revealed difficulty in deciding what counts as disability, opens opportunities for change in bioethics. For instance, within radical models of disability, there is an opportunity for coalition-building. Julia Avril Minich argues that the theoretical work done in this arena should be done “with the goal of producing knowledge in support of justice for people with stigmatized bodies and minds” and aims for increased solidarity among those who are “devalued” or “pathologized” by larger systems of power, even if they do not identify as disabled.96 Scholars working in bioethics urgently must attend to bioethics’ own complicity within systems of power which devalue or pathologize persons with stigmatized bodies and minds. Bioethicists must grapple seriously with the fact that disability cannot be treated as a stand-in for a life not worth living. Bioethicists cannot hope to work to improve justice for disabled people in medical encounters, emerging technology, and health care without doing that work.

N OTE S 1. Norman Daniels, Just Health Care (Princeton, NJ: Princeton University Press, 1985). 2.  Exceptions include Elizabeth Barnes’ mere-difference view and Shelley Tremain’s historical-relativist view; Elizabeth Barnes, The Minority Body: A Theory of Disability (Oxford, UK: Oxford University Press, 2016); Shelley Tremain, Foucault and Feminist Philosophy of Disability (Ann Arbor: University of Michigan Press, 2017). 3.  Julian Savulescu and Guy Kahane, “Disability: A Welfarist Approach,” Clinical Ethics 6, no. 1 (2011): 45–51, http://dx.doi.org/10.1258/ce.2011.011010. 4.  Rosemarie Garland-Thomson, “Integrating Disability, Transforming Feminist Theory,” NWSA Journal 14, no. 3 (2002): 1–32, https://doi.org/10.1353/nwsa.2003.0005.

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5. Shelley Tremain, “The Biopolitics of Bioethics and Disability,” Journal of Bioethical Inquiry 5 (2008): 101–6, http://dx.doi.org/10.1007/s11673-008-9105-6. 6.  Talila “TL” Lewis, “Working Definition of Ableism,” Talila A. Lewis, January 2021, https://www.talilalewis .com/blog/january-2021-working-definition-of-ableism. 7. Fiona Kumari Campbell, Contours of Ableism: The Production of Disability and Abledness (London: Palgrave Macmillan, 2009); Jennifer Scuro, Addressing Ableism: Philosophical Questions via Disability Studies (Lanham, MD: Lexington Books, 2017). 8.  Sara Goering, “‘You Say You’re Happy, but . . .’: Contested Quality of Life Judgments in Bioethics and Disability Studies,” Journal of Bioethical Inquiry 5 (2008): 125–35, https://doi.org/10.1007/s11673-007-9076-z; William Peace, “Comfort Care as Denial of Personhood,” Hastings Center Report 42, no. 4 (2012): 14–17, http://dx.doi .org/10.1002/hast.38. 9. Shelley Tremain, “The Biopolitics of Bioethics and Disability,” Journal of Bioethical Inquiry 5 (2008): 101–6, http://dx.doi.org/10.1007/s11673-008-9105-6. 10. Paul Abberley, “The Concept of Oppression and the Development of a Social Theory of Disability,” Disability, Handicap and Society 21 (1987): 5–19, https://doi .org/10.1080/02674648766780021; Ron Amundson and Shari Tresky, “Bioethics and Disability Rights: Conflicting Values and Perspectives,” Bioethical Inquiry 5 (2008): 111–23, https://doi.org/ 10.1007/s11673-008-9096-3; Tom Koch, “The Difference that Difference Makes: Bioethics and the Challenge of ‘Disability,’” Journal of Medicine and Philosophy 29, no. 6 (2004): 697–716, http://dx.doi .org/10.1080/03605310490882975. 11.  Ron Amundson, “Against Normal Function,” Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences 31, no. 1 (2000): 33–53, https://doi.org/ 10.1016/s1369 -8486(99)00033-3. 12.  Melinda Hall, The Bioethics of Enhancement: Transhumanism, Disability, and Biopolitics (Lanham, MD: Lexington Books, 2016); Shelley Tremain, Foucault and Feminist Philosophy of Disability (Ann Arbor: University of Michigan Press, 2017). 13. Tremain, Foucault and Feminist Philosophy of Disability. 14.  Melinda Hall, “Critical Disability Theory,” The Stanford Encyclopedia of Philosophy, ed. Edward N. Zalta (Winter 2019), https://plato.stanford.edu/archives/win2019 /entries/disability-critical. 15.  Joseph Stramondo, “Why Bioethics Needs a Disability Moral Psychology,” The Hastings Center Report 46, no. 3 (2016): 22–30, http://dx.doi.org/10.1002/hast.585; Stephen M. Campbell and Joseph A. Stramondo, “The Complicated Relationship of Disability and Well-Being,” Kennedy Institute of Ethics Journal 27, no. 2 (2017): 151–84, https://doi

.org/10.1353/ken.2017.0014; Alicia Ouellette, Bioethics and Disability: Toward a Disability-Conscious Bioethics (Cambridge: Cambridge University Press, 2013). 16.  Dana Lee Baker, “Bridging the Deficiency Divide: Expressions of Non-Deficiency Models of Disability in Health Care,” Disability Studies Quarterly 29, no. 2 (2009), https://doi.org/10.18061/dsq.v29i2.919. 17.  Elizabeth Barnes, The Minority Body: A Theory of Disability (Oxford, UK: Oxford University Press, 2016), 11. 18. Tremain, “The Biopolitics of Bioethics and Disability”; Tremain, Foucault and Feminist Philosophy of Disability. 19.  Rob Gould, Sarah Parker Harris, and Kate Caldwell, “Health Care Access and the ADA: An ADA Knowledge Translation Center Research Brief,” ADA National Network (2019), https://adata.org/sites/adata.org/files/files /Health%20Care%20Access%20and%20the%20ADA.pdf. 20.  Chandler Gill et al., “Difficulty in Securing Treatment for Degenerative Hip Disease in a Patient with Down Syndrome: The Gap Remains Open,” Journal of the National Medical Association 98 (2006): 93–96; Jeremy C. Gibson and Rory J. O’Connor, “Access to Health Care for Disabled People: A Systematic Review,” Social Care and Neurodisability 1, no. 3 (2010): 21–31, https://doi.org/10.5042/scn.2010.0599; Tara Lagu et al., “Access to Subspecialty Care for Patients with Mobility Impairment: A Survey,” Annals of Internal Medicine 158 (2013): 441–46, https://doi.org/10.7326/00034819-158-6-201303190-00003; Ari Ne’eman, “The Affordable Care Act and the I/DD Community: An Overview of the Law and Advocacy Priorities Going Forward,” ASAN Autistic Self Advocacy Network Policy Brief (September 2013), https://autisticadvocacy.org/wp-content /uploads/2013/09/ACA-ASAN-policy-brief.pdf. 21. Ari Ne’eman, Steven Kapp, and Caroline Narby, “Organ Transplantation and People with I/DD: A Review of Research, Policy and Next Steps,” ASAN Autistic Self Advocacy Network Policy Brief (March 2013), https://autistic advocacy.org/wp-content/uploads/2013/03/ASAN-Or gan-Transplantation-Policy-Brief_3.18.13.pdf. 22.  Monika Mitra et al., “Maternal Characteristics, Pregnancy Complications, and Adverse Birth Outcomes among Women with Disabilities,” Medical Care 53, no. 12 (2015): 1027– 32, http://dx.doi.org/10.1097/MLR.0000000000000427. 23.  Melanie Chapman et al., “The Misdiagnosis of Epilepsy in People with Intellectual Disabilities: A Systematic Review,” Seizure 20, no. 2 (2011): 101-6, https://doi /org/10.1016/j.seizure.2010.10.030; Amy Hogan et al., “Disabled People Say ‘Nothing about Us without Us,’” The Clinical Teacher 17, no. 1 (2020): 70–75, https://doi.org /10.1111/tct.13022. 24.  Michel Desjardins, “The Sexualized Body of the Child: Parents and the Politics of ‘Voluntary’ Sterilization of People Labeled Intellectually Disabled,” in Sex and Disability, eds. Robert McRuer and Anna Mollow (Durham, NC: Duke University Press, 2012): 82–99.

25. Ron Amundson, “Health Resource Rationing,” in Encyclopedia of Disability, vol. 2, ed. Gary Albrecht (Sage, 2006): 841–45. 26.  Gloria L. Krahn, Deborah Klein Walker, and Rosaly Correa-De-Araujo, “Persons with Disabilities as an Unrecognized Health Disparity Population,” American Journal of Public Health 105, suppl. 2 (2015), S198–S206, http://dx.doi .org/10.2105/AJPH.2014.302182. 27. Julian Savulescu, “Resources, Down’s Syndrome, and Cardiac Surgery,” BMJ 322, no. 7291 (2001): 875–76, http://dx.doi.org/10.1136/bmj.322.7291.875. 28.  Disability-adjusted life years (DALYs) are related, but these are a measure of the affect of a disease on a person, not a measure to compare interventions. 29.  Alan Williams, “QALYs and Ethics: A Health Economist’s Perspective,” Social Science & Medicine 43, no. 2 (1996): 1795–804; Alan Williams, “The Value of QALYs,” in Arguing about Bioethics, ed. Stephen Holland (Routledge, 2012): 424. 30.  Williams, “QALYs and Ethics,” 1796. 31.  Williams, “The Value of QALYs,” 423. 32.  John Harris, “QALYfying the Value of Life,” in Arguing about Bioethics, ed. Stephen Holland (Routledge, 2012), 429. 33.  Harris, “QALYfing the Value,” 430. 34.  John Harris, The Value of Life (Routledge, 1985). 35.  Williams, “QALYs and Ethics,” 1797. 36.  “Quality-Adjusted Life Years and the Devaluation of Life with Disability: Part of the Bioethics and Disability Series,” National Council on Disability, November 6, 2019, https://ncd.gov/sites/default/files/NCD_Quality _Adjusted_Life_Report_508.pdf. 37.  Williams, “QALYs and Ethics,” 1796. 38.  Goering, “You Say You’re Happy,” 126. 39.  Ari Ne’eman, “I Will Not Apologize for My Needs,” The New York Times, March 23, 2020, https://www.nytimes .com/2020/03/23/opinion/coronavirus-ventilators-triage -disability.html; Joel M. Reynolds, Laura GuidryGrimes, and Katie Savin, “Against Personal Ventilator Reallocation,” Cambridge Quarterly for Healthcare Ethics (October 2, 2020): 1–13, http://dx.doi.org/10.1017 /S0963180120000833; Joseph Stramondo, “COVID-19 Triage and Disability: What NOT To Do,” Bioethics.net, March 30, 2020, http://www.bioethics.net/2020/03/covid-19triage-and-disability-what-not-to-do/; Alice Wong, “I’m Disabled and Need a Ventilator to Live. Am I Expendable During This Pandemic?” Vox, April 4, 2020, https://www .vox.com/first-person/2020/4/4/21204261/coronavirus -covid-19-disabled-people-disabilities-triage. 40.  Wong, “I’m Disabled and Need.” 41. Walter Viet et al., “Can ‘Eugenics’ Be Defended?,” Monash Bioethics Review 39 (2021): 60–67, http://dx.doi .org/10.1007/s40592-021-00129-1. 42.  Harriet McBryde Johnson, “Unspeakable Conversations,” The New York Times Magazine, 2003, https://www

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.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html. 43.  Peter Singer, Rethinking Life and Death: The Collapse of Our Traditional Ethics (St. Martin’s Press), 112. 44. Peter Singer, Practical Ethics, 2nd ed. (Cambridge, UK: Cambridge University Press, 1993), 100. 45. Singer, Practical Ethics, 182–86. 46. Dennis R. Cooley, “A Kantian Moral Duty for the Soon-to-Be Demented to Commit Suicide,” American Journal of Bioethics 7, no. 6 (2007): 37–44, https://doi .org/10.1080/15265160701347478. 47.  Jeff McMahan, The Ethics of Killing (Oxford: Oxford University Press, 2003). 48.  Eva Kittay, “At the Margins of Moral Personhood,” Journal of Bioethical Inquiry 5 (2008): 140, https://doi.org /10.1086/454366. 49.  Ibid., 139. 50.  Ibid., 137. 51.  Stramondo, “Why Bioethics Needs.” 52.  Campbell and Stramondo, “The Complicated Relationship.” 53. Ouellette, Bioethics and Disability. 54.  William J. Peace, Bad Cripple, 2019, https://badcrip ple.blogspot.com. 55. Ibid. 56.  Peace, “Comfort Care,” 14–15. 57. Peace, Bad Cripple. 58.  Peace, “Comfort Care”; William Peace, “A Peaceful Death or a Risk to People with Disabilities?” Bioethics Forum (February 2, 2013), https://www.thehastingscenter.org/a -peaceful-death-or-a-risk-to-people-with-disabilities/. 59. Peace, Bad Cripple. 60.  Brian D. Smedley, Adrienne Y. Stith, and Alan R. Nelson, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care (Washington, DC: National Academy Press, 2002). 61.  Diane E. Hoffman and Anita J. Tarzian, “The Girl Who Cried Pain: A Bias against Women in the Treatment of Pain,” Journal of Law, Medicine & Ethics 29 (2001): 13–27, https://doi.org/ 10.1111/j.1748-720x.2001.tb00037.x. 62. Silvia Yee et al., “Compounded Disparities: Health Equity at the Intersection of Disability, Race, and Ethnicity,” Washington, DC: The National Academies of Sciences, Engineering, and Medicine, 2018, https://dredf.org /wp-content/uploads/2018/01/Compounded-Disparities-Intersection-of-Disabilities-Race-and-Ethnicity.pdf. 63.  Peace, “Comfort Care”; Peace, “A Peaceful Death”; cf. Cooley, “A Kantian Moral Duty.” 64.  Jeff McMahan, “Preventing the Existence of People with Disabilities,” in Quality of Life and Human Difference: Genetic Testing, Health Care, and Disability, eds. David Wasserman, Jerome Bickenbach, and Robert Wachbroit (Cambridge: Cambridge University Press, 2005): 142–71; Julian Savulescu, “Procreative Beneficence: Why We Should

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Select the Best Children,” Bioethics 15, no. 5/6 (2001): 413– 26, http://dx.doi.org/10.1111/1467-8519.00251. 65. Erik Parens, ed., Surgically Shaping Children: Technology, Ethics, and the Pursuit of Normality (Baltimore, MD: Johns Hopkins University Press, 2008). 66. Eli Clare, Brilliant Imperfection: Grappling with Cure (Durham, NC: Duke University Press, 2017). 67.  Nev Jones and Robyn Brown, “The Absence of Psychiatric C/S/X Perspectives in Academic Discourse: Consequences and Implications,” Disability Studies Quarterly 33, no. 1 (2013), https://dsq-sds.org/article/view/3433. 68. McMahan, The Ethics of Killing; Julian Savulescu, “Procreative Beneficence.” 69.  Savulescu, “Procreative Beneficence,” 415. 70. Melinda Hall, “Reconciling the Disability Critique and Reproductive Liberty: The Case of Negative Genetic Selection,” International Journal of Feminist Approaches to Bioethics 6, no. 1 (2013): 121–43, https://doi.org/10.2979 /intjfemappbio.6.1.121. 71.  Melinda Hall, The Bioethics of Enhancement: Transhumanism, Disability, and Biopolitics (Lanham, MD: Lexington Books, 2016). 72.  Daniel F. Gunther and Douglas Diekema, “Attenuating Growth in Children with Profound Developmental Disability: A New Approach to an Old Dilemma,” Archives of Pediatric & Adolescent Medicine 160, no. 10 (2006): 1013–17, https://doi.org/10.1001/archpedi.160.10.1013. 73. Ed Pilkington and Karen McVeigh, “‘Ashley Treatment’ on the Rise amid Concerns from Disability Rights Groups,” The Guardian, March 15, 2012, https://www .theguardian.com/society/2012/mar/15/ashley-treat ment-rise-amid-concerns. 74. Eva Kittay, “Forever Small: The Strange Case of Ashley X,” Hypatia 26, no. 3 (2011): 610–31, http://dx.doi .org/10.1111/j.1527-2001.2011.01205.x; William Peace and Claire Roy, “Scrutinizing Ashley X: Presumed Medical ‘Solutions’ vs. Real Social Adaptation,” Philosophy, Science & Law 14, no. 3 (2014): 33–52, http://dx.doi.org/10.5840 /jpsl20141439. 75.  Ibid., 627. 76.  S. Matthew Liao, Julian Savulescu, and Mark Sheehan, “The Ashley Treatment: Best Interests, Convenience, and Parental Decision-Making,” The Hastings Center Report 37, no. 2 (2007): 16–20, http://dx.doi.org/10.1353 /hcr.2007.0027. 77.  Ibid., 19. 78.  Peace and Roy, “Scrutinizing Ashley X.” 79.  Ibid., 45. 80.  Rosemarie Garland-Thomson, “Eugenic World Building and Disability: The Strange Case of Kazuo Ishiguro’s Never Let Me Go,” Journal of Medical Humanities 38, no. 2 (2017): 133–45, https://doi.org/ 10.1007/s10912015-9368-y; Rosemarie Garland-Thomson, “How We Got to CRISPR: The Dilemma of Being Human,” Perspectives

in Biology and Medicine 63, no. 1 (2020): 28–43, https://doi .org/ 10.1353/pbm.2020.0002. 81.  Rosemarie Garland-Thomson, “The Case for Conserving Disability,” Journal of Bioethical Inquiry 9, no. 3 (2012): 339–55, https://doi.org/ 10.1007/s11673-012-93800; Rosemarie Garland-Thomson, “Human Biodiversity Conservation: A Consensual Ethical Principle,” American Journal of Bioethics 15, no. 6 (2015): 13–15, https://doi.org /10.1080/15265161.2015.1028663. 82.  Faye Ginsburg and Rayna Rapp, “Making Disability Count: Demography, Futurity and the Making of Disability Publics,” Somatosphere: Sience, Medicine, Anthropology (May 2015), http://somatosphere.net/2015/05/making disability-count-demography-futurity-and-the-making -of-disability-publics.html; Faye Ginsburg and Rayna Rapp, “Cripping the Future: Making Disability Count,” in Anthropologies and Futures: Researching Emerging and Uncertain Worlds, eds. Andrew Irving et al. (London: Bloomsbury Press, 2017), 43–60. 83.  Kelly Fritsch, “Toxic Pregnancies: Speculative Futures, Disabling Environments, and Neoliberal Capital,” in Disability Studies and the Environmental Humanities: Toward an Eco-Crip Theory, eds. Sarah Jaquette Rau and Jay Sibara (Lincoln,NE; London: University of Nebraska Press, 2017), 359–80; Hall, “Critical Disability Theory.”

84. Alison Kafer, Feminist, Queer, Crip (Bloomington: Indiana University Press, 2013), 6. 85. Ibid. 86. Ibid. 87. Ibid. 88. Ibid. 89.  Garland-Thomson, “Integrating Disability.” 90.  Ibid., 16. 91.  Ibid., 18. 92. Barnes, The Minority Body. 93.  Tremain, “The Biopolitics of Bioethics”; for another treatment of biopower and bioethics, see Catherine Mills, Futures of Reproduction: Bioethics and Biopolitics (Dordrecht, Netherlands: Springer, 2011). 94. Tremain, Foucault and Feminist Philosophy of Disability, 18. 95.  Shelley Tremain, “On the Government of Disability,” Social Theory and Practice 27, no. 4 (2001): 617–36, http:// dx.doi.org/10.5840/soctheorpract200127432; Tremain, Foucault and Feminist Philosophy of Disability, 93. 96. Julie Avril Minich, “Enabling Whom? Critical Disability Studies Now,” Lateral 5, no. 1 (2016), http://dx.doi .org/10.25158/L5.1.9.

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SEC TION VI

EPIDEMICS AND PANDEMICS

CHAPTER 20

Responsible Pain Medicine Travis N. Rieder, Divya Manoharan, and Vivian V. Altiery De Jesus

T

he central question of pain medicine ethics is a deceptively simple one: What should we do about pain? The “we” here is vague, of course. Is “we” clinicians? The broader health care system? Society? And indeed, each interpretation of “we” asks a relevant moral question. But at the bottom is recognition that pain is morally relevant and so generates moral claims. Indeed, some moral philosophers believe that the foundational claim about value is that pain is bad, and pleasure (as well as the absence of pain) is good, so all moral requirements stem from this basic set of claims.1 Those in medicine tend to favor a slightly more complicated view. The experience of pain may well be bad, but it can play a functional role, alerting the pained person to tissue damage or warning that certain actions will cause harm. Further, pain is famously fickle—philosophically difficult to understand, radically subjective, and modifiable not only through pharmaceuticals but also through cognitive processes and practices like distraction. In addition, some of medicine’s most powerful tools for combatting certain pains come with serious risks and side effects; so we’re left not just considering the badness of pain but the harms that can come through the widespread use of pharmacotherapies like opioids in the treatment of pain.

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So the question, “What should we do about pain?” is a phenomenally complex one in practice. And candidate answers range widely, often differing in popularity between societies. For instance, one possible answer is that we shouldn’t do anything about pain; it’s something to be dealt with or overcome by the individual suffering it. Call this the stoic answer. There are likely not many in medicine who hold such an explicitly stoic view, but some individual patients and clinicians—as well as cultures—are more stoic than others (and a society may be more or less stoic at different points in time). Doctors in many countries, for instance, tend to send patients home from injury or minor surgery with fewer opioids and are more likely to prescribe acetaminophen or ibuprofen than physicians in the United States.2 A clinician with a somewhat more stoic view will tell patients they should rest, heal, listen to the pain, and allow it to play its functional role. In the twenty-first-century America, this view is much rarer. Many patients and some clinicians believe there is no reason to live—even for a short time—with severe pain, and so patients should almost always be offered opioids after surgery. Some Americans might come close to the opposite of the stoic view and embrace something like the claim that people have a right to live largely pain-free lives. On this view, even minor pains should be aggressively

treated, and any failure of medicine to do so amounts to a rights violation. Of course, it’s not likely that any person or society holds precisely either extreme, simple view, but they occupy something like bookends, which tell us something about the range of possible responses to pain. As with most things, the correct moral view is likely somewhere in the middle, recognizing that pain can be terrible and life-limiting, but that it can also sometimes simply be dealt with, and that there may well be reasons to do that. The goal of this chapter is not to argue for any particular view regarding what we ought to do in pain medicine, but rather to landscape some of the most important questions and issues that have been explored in the name of answering that central question: What should we do about pain? This question has been further complicated in the current age— especially in North America—due to a dramatic drug overdose crisis that was exacerbated, in part, by the overprescribing of opioids. And so the more precise version of the question that is relevant today is: What does responsible pain medicine look like in the midst of a catastrophic drug overdose crisis? This question raises a whole nest of thorny issues in philosophical ethics, clinical ethics, and public health ethics, many of which are genuinely difficult and some of which are quite divisive for health professionals. Toward the end of providing some clarity around the complex ethics surrounding pain and opioid use, we will propose a categorization of question “types” in pain medicine ethics, all of which are important to address if we want to make progress on the central question. On our typology, common pain medicine ethics explorations concern (1) philosophical issues regarding pain, (2) clinical challenges in pain medicine, and (3) structural issues that form the backdrop of pain medicine. Our hope is that providing this landscaping project will invite others to identify important topics that have been under-explored, as well as relationships between topics that may have been well discussed in isolation but merit further dissection in combination. For this reason, we will close with some thoughts

about what we hope to see more of in the next generation of pain medicine ethics literature.

P H I LO S O P H I C A L I S S U E S Pain enters into our midst as at once something that cannot be denied and something that cannot be confirmed (thus it comes to be cited in philosophic discourse as an example of conviction, or alternatively as an example of skepticism). To have pain is to have certainty; to hear about pain is to have doubt.3 This quote neatly summarizes how philosophical issues surrounding pain lead to ethical issues in pain medicine. In short, pain is both mundane and mysterious. Although pain is a standard part of life and living, the conceptual unclarity around the topic leads to many challenges in practically dealing with it. Pain is a ubiquitous and universal human experience,4 which, from an evolutionary standpoint, serves as a protective mechanism and is essential for survival.5 Without pain, we would be oblivious to daily-life dangers and harms.6 This is why anhidrosis—a congenital disease that causes the inability to feel pain and temperature—requires careful medical attention for survival.7 However beneficial it may be for human survival, though, it is not thereby typically thought of as “good.” Pain may play a functional role, but the experience of pain is typically thought of as “bad” and is a common cause for seeking medical attention. It is the mitigation of this harm of the pain experience that is the job of pain medicine. The International Association for the Study of Pain (IASP) defines pain as “an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage.”8 Although pain is often used interchangeably with suffering, it is more accurate to say that pain can cause suffering9 or be considered as a manifestation of suffering.10 This is because suffering can exist without pain11 as in the cases of anticipating pain, or in isolation, or the loss of a loved one.12 Pain

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is thus often accompanied by suffering, but it need not be (if the pain doesn’t bother one, for instance), and there may be suffering without pain. The fact that pain is a sensory and emotional experience makes it difficult to understand and communicate. Pain can be acute or chronic, last constantly or be intermittent, have different etiologies and modalities, and shapeshift throughout the day.13 But none of these features of pain can be objectively measured. As an experience, pain is inherently subjective: no matter what information the clinician gains about tissue damage or biological abnormalities, these empirical facts do not convey what it’s like to feel the patient’s pain. The subjectivity of pain is thus one of the central philosophical difficulties of understanding pain. Pain, as a felt experience, is certain to the one who has it; but there is always room for doubt on the part of the one to whom it is reported. One widely used tool to attempt to objectify pain measurement to some degree is a “pain scale,” on which a patient is asked to report the severity of their pain as a number between zero and ten, with zero representing no pain and ten representing the worst pain imaginable.14 However, this tool is certainly not perfect, as there is no way to objectively calibrate the scale; that is, there is no way to adjudicate that what a patient reports as a “six” on the pain scale is what the clinician would call a six, or indeed, what any other person would call a six. This weakness in the pain scale suggests that there is a problem with the common practice of aiming for clinical significance in pain improvement, as the concept of clinical significance requires making a judgment about what movements on the pain scale mean that might not be meaningful to any individual patient.15 Unsurprisingly, one of the most important upshots of the subjectivity of pain for ethics is that it allows room for the introduction of doubt, distrust, skepticism, and concerns over malingering during the clinical encounter.16 If a patient is never able to convey perfectly to a clinician what their pain is like, then the clinician always has epistemic space for disbelief. The clinician cannot know the pain of a patient the way one can know a patient’s heart 220 

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rate or temperature. Pain—despite the best efforts of the “pain as the fifth vital sign” movement—is not a sign like the others, precisely because there is no tool for objective measurement. It is, as the IASP says, an experience. That there is room for doubt and suspicion will likely cause problems whenever there is any possible reason that a patient could conceivably be motivated to lie. And against the backdrop of America’s drug overdose crisis—which began as an opioid crisis—clinicians can always posit a reason for the patient to lie: because pain reports can yield prescriptions for desired opioids. To be clear: that a clinician can posit this reason does not grant legitimacy to any clinician’s doubt of their patient; rather, it is acknowledging that the fact that opioids are desirable (and that this desirability has become part of the backdrop of medicine and society) has changed the nature of the clinical encounter. In short, the fact that pain is an essentially subjective experience, unable to be objectively measured, is a fundamental ethical problem for pain medicine and is particularly challenging against the backdrop of America’s drug overdose epidemic. Pain, then, is both mundane and mysterious. It is inherently subjective, but clinicians need a way to understand their patients’ pain in order to respond. Medicine has developed tools in response to this need, but they are far from perfect. This is the philosophical backdrop of pain medicine. It is with this backdrop in mind that we can ask: What ought we to do about pain? And if the answer is that clinicians should treat it, how should they do so? These are the questions that give rise to the clinical ethical challenges in pain medicine.

CLINICAL ISSUES At the clinical level, pain and pain management are fraught with ethical challenges. This section provides a landscape of important clinical issues within pain medicine. First, it explores a seeming tension between the moral principles of beneficence and non-maleficence in pain medicine. The section then focuses on

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the ways in which bias and stigma can lead to racism and health inequities in pain care, before finally turning to the ways in which all of these challenges threaten the clinician–patient relationship. Although certainly not exhaustive, the issues raised here account for many of the challenges found in extant attempts to answer the questions, “How should we treat pain? And who decides when to treat pain?”

Balancing Beneficence and Non-maleficence Pain medicine clinicians are directed to alleviate suffering from pain, but they are acutely aware that their treatments also have the potential to harm. While pain itself may cause suffering, so can the treatments for pain, which include invasive procedures as well as dependence-forming and addictive pharmacotherapies. Thus, both undertreatment and overtreatment of pain can cause harm to the patient.17 As a result, pain medicine clinicians are concerned with the ethical principle of beneficence (promoting the patient’s good) as well as non-maleficence (refraining from causing harm), and many of the difficult cases of pain medicine involve balancing these two principles against one another. The salience of one of these principles over the other can be influenced by societal attitudes at a given time. In the 1980s and 1990s, when opinion was forming that pain wasn’t being taken seriously enough, the duty to alleviate pain rose to the forefront (as can be seen in the rise of the “Pain as the 5th Vital Sign” movement); clinicians were pressured to aggressively treat pain, leading to an increase in opioid prescribing. However, after more than a decade of aggressive opioid prescribing, public opinion turned on physicians, who were commanded to stop harming (or even killing) their patients through the overprescribing of opioids.18 This, as a result, made the duty of non-maleficence particularly salient. In both cases, it was possible to irresponsibly treat pain by overestimating the weight of the salient value while discounting the weight of the other value. And now, in 2022, certain patients risk being multiply subjected to iatrogenic (i.e., medically caused)

harms, as they were prescribed opioids aggressively in the 1990s and early 2000s, but are now being abandoned or abruptly discontinued by prescribers who feel pressured to stop prescribing aggressively. These patients—called “legacy patients”—are often on high doses of opioids for conditions that we no longer think warrant chronic opioid therapy, but discontinuation risks multiplying the wrongs done to them.19 In terms of determining how to weigh beneficence and non-maleficence against one another, much of the ethical attention in pain medicine is paid to concrete cases. Should you prescribe opioids for various sorts of pain?20 If so, how much?21 Some answers seem straightforward to determine, as in the case of routine surgeries (such as joint replacements); we can study how many pills patients usually take and whether minor interventions (such as education on the risks of opioids and the need to minimize their use) reduce the amount they take. But other cases are more difficult; if a patient is in chronic, intractable pain, and only opioids seem to provide relief, how should a physician weigh the risks of chronic opioid use against the very real benefit of pain relief? Although these cases are obviously real and urgent, it is important to note that they do not exhaust the ethical evaluation needed in pain medicine. The risks that come from treating patients (adverse outcomes from procedures, or iatrogenic dependence or addiction, for instance) are not the only moral constraints on clinical behavior. And that’s because beneficence and non-maleficence are not the only ethical principles relevant in medicine. Other well-established principles include respect for persons and a requirement of justice, both of which are clearly relevant to pain medicine.22 Even standard clinical dilemmas, then, are likely more complex than they are often taken to be, involving more than simply deducing whether opioids are more likely to benefit than to harm a particular patient. While much attention has been paid to attempts to “reduce opioid prescribing,” this sort of frame assumes that opioid prescribing should be reduced, which in the abstract, overweighs non-maleficence without recognizing that ethically responsible treatment of pain cannot know in advance whether a certain treatment will be Responsible Pain M edicine 

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more or less called for.23 Thus, as some clinicians have noted,24 pain medicine needs an ethical framework to guide fraught treatment decisions. Although an ethics framework may provide needed guidance, it is focused on narrow questions of the form, “should a particular clinician use a particular treatment in a particular context?” There is much more to the clinical ethics of pain medicine, though, beginning with the backdrop of injustice.

Racism, Bias, Stigma, and Health Inequities The subjective nature of pain discussed in the first section of this chapter, “Philosophical Issues,” has led to room in the clinical relationship for distrust, discrimination, and stigma around pain and pain medicine, all of which can exacerbate health inequities. As a result, it is imperative that clinicians learn how to mitigate stigma and discrimination in the management and treatment of pain.25 This is clear not only because there is an ethical requirement to treat patients with respect but because bias in health professionals correlates with disparities in health care.26 Although often used interchangeably, stigma, bias, prejudice, and discrimination are subtly distinct concepts. Stigma is “an attribute that links a person to an undesirable stereotype,”27 whereas prejudice is “an aversive or hostile attitude toward a person that belongs to a group.”28 A bias is a favorable or unfavorable preconceived opinion that may be implicit or explicit.29 Bias is particularly problematic because it can be implicit or unconscious, raising concerns due to the lack of awareness of the health care professional and the negative impact in health care outcomes.30 An important example of this in pain medicine is the systematic undertreatment of pain for women31 and Black patients.32 Importantly, however, undertreatment of pain is not the only possible harm to come from stigma and bias. When a clinician restricts access to a treatment, such as opioids, due to the patient belonging to a certain social group (such as race or gender), there is an additional harm due to the nature of the refusal. One example of this additional harm is epistemic 222 

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injustice, which occurs when the patient is wronged, specifically in their capacity as a knower.33 Most commonly, this occurs as an instance of testimonial injustice, in which the clinician takes the patient’s narrative to lack credibility.34 As previewed in the first section, “Philosophical Issues,” the subjective nature of pain makes space for this disbelief, and the possibility of secondary gain (not only medications like opioids, but also disability benefits) provides the clinician with a reason for suspicion.35 This, combined with biases concerning social groups (that some are more likely to be “malingering,” for instance), makes pain medicine a high-risk environment for epistemic injustice. There are thus multiple ways in which patients can be wronged in pain medicine, and trying to avoid them all is a serious ethical challenge. Before closing the clinical ethics overview, however, it is worth noting that some of medicine’s attempted solutions have risks as well, as they threaten the clinician–patient relationship.

Clinician–Patient Relationship One outcome of the sort of suspicion, distrust, and ultimately disrespect that can occur due to bias and stigma is a fraying of the clinician–patient relationship. This can happen directly, as disbelief on the part of the clinician can cause a negative response by the patient, which serves to confirm the clinician’s distrust, and so on. But it can also result from medicine’s attempts to alleviate suspicion. Tools such as opioid treatment contracts, regular pill counts, and urine toxicology screens have become standard protocol for much of pain medicine, but the ethics of these interventions are complicated. On the one hand, their very presence can establish an air of suspicion, since they are looking for information that the patient could provide verbally; that is, the reason for the protocols seems to be that the patient’s verbal reports themselves are not to be trusted. However, there is also a case to be made that universal screening can decrease bias, by requiring them as a matter of course. It removes the possibility of a clinician requiring opioid contracts, for instance, only from

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patients they deem “suspicious,” where suspicions may track individual prejudice.36 Additionally, it’s unclear whether confirmatory testing should really undermine trust, since such a strategy is used in other parts of medicine—like, for instance, the A1c, a blood test that measures blood sugar average level for up to three months. The test can confirm the patient’s narrative about lifestyle changes (e.g., following a healthy diet) and medication regimen. However, the analogy isn’t perfect. Even if patients were always perfectly honest, an A1c test could be helpful by providing a precise measurement of how lifestyle changes have impacted blood sugar; but pill counts and urine toxicology screens are not like that. They are testing precisely one thing, which is whether the patient is telling the truth about their drug use. Of course, an A1c test could be used like a urine toxicology screen and thereby create a suspicious or even punitive environment; but it can be justified on the grounds that it’s possible for it to be doing something else. There is a reason to test blood sugar levels aside from being suspicious that the patient might be lying; in the case of pain medicine, suspicion seems to be the only justification. Similarly, with opioid treatment contracts, other sorts of patients regularly disregard physician advice or fail to adhere strictly to treatment, but they are not required to sign contracts governing their behavior. While clinicians likely worry about patients’ weight or BMI and provide guidance, overweight patients are not routinely required to sign contracts governing their behavior in order to access care, with loss of that health care a punishment for non-adherence. Why, then, is pain medicine singled out as requiring contracts regarding opioids and pain treatment? And even if we decide that OTCs are, ultimately, necessary, how can they be constructed so as to minimize the risk of disrespect to patients? This section began by noting the seeming tension between two common principles of medical ethics— beneficence and non-maleficence. The remainder of the section, however, showed that—however complicated navigating that tension already was—there are many more ethical considerations in the clinical practice of pain medicine. Stigma and bias threaten the

just practice of medicine, and suspicion can fracture the clinical relationship and make room for disrespect. One possible response to this level of complexity is to abandon complete reliance on principles of medical ethics and investigate alternative ethical frameworks, such as that found in virtue ethics.37 Whatever form it takes, ethical guidance continues to be needed in the pain management clinic. However, such guidance does not exhaust the need for ethical reflection in pain medicine. Although we set out to explore the question, “What should we do about pain?,” clinical attempts to answer that question are frequently restricted by structural forces already in place. Our final piece of the landscape is an exploration of those forces.

S T RU C T U R A L I S S U E S Regardless of how much guidance we generate for individual clinical decision-making, the choices clinicians have available are limited by structural issues. Neither the clinician nor the patient exists in a vacuum—pain medicine is continuously built and rebuilt by structural players. This background structure involves pharmaceutical companies, payers, the medical education system and institutions, as well as policies and regulations. Clinicians can’t always do what they ought to do when they operate in a system rife with structural issues, so it is not enough to answer our original question of, “what should we do about pain” without first asking, “what forces influence our ability to do what we should?”

Pharma, Conflicts of Interest, and Profitability The most obvious structural association with pain management is that of the pharmaceutical industry. It would be virtually impossible to discuss the structural influences on the practice of pain management without noting the roles of companies like Purdue Pharma (maker of OxyContin) and Insys Therapeutics (maker of Subsys). Both of these companies broke the law and engaged in undoubtedly unethical Responsible Pain M edicine 

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practices in order to sell more opioid products, but these are just a couple of examples of the role that companies can play in pain management.38 The pharmaceutical industry has solidified its place in medicine, and so have its profit motives.39 But it’s not any individual company that creates a challenging climate for clinicians and patients; it’s the entire system of profit-driven pharmaceuticals, including distributors and pharmacies and the policies that allow them to plow forward with impunity.40 One set of ethical issues to be investigated, then, is what responsibility bad institutional actors should have to “clean up their own mess”—in this case, what responsibility pharmaceutical companies who played a role in sparking addiction and overdose in America have to address that crisis. But even Purdue Pharma’s large-sounding settlement of $10 billion is not nearly enough to “solve” anything. For one, very little of this money will go directly toward public health initiatives that will decrease current rates of addiction and overdose. And what little does will not come close to the estimated $100 billion needed to make a meaningful impact on the broader drug overdose crisis.41 Despite the societal catharsis that comes from focusing on single players like Purdue, or executives like John Kapoor of Insys, doing so won’t solve any fundamental problems regarding pain medicine, addiction, or drug overdose in America. Punishing bad players but maintaining the bad system is a recipe for continued pain mismanagement. A more upstream attempt to address structural issues surrounding corporate interests in medicine, then, is to think about the variety of ways in which health care would need to be reformed in order to promote physicians’ ability to practice pain medicine free from influence. Issues standing in the way of this that have begun to be addressed by policy include corporations marketing drugs for off-label use, pharmaceutical gift-giving and sponsorships, and conflicts of interest arising from industry payments to clinicians. But what each of these issues touch on is the reality that clinicians rely on industry representatives for “education” about products, which injects the profit motive directly into ongoing education, and so clinicians and companies 224 

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need guidance on how these interactions should be allowed to go.42 Even if the previously mentioned issues could be solved, however, there is yet another way in which the profit motive of pharmaceutical companies has infected medicine, and that is through disease inflation, or the practice of expanding diagnostic categories in order to create new markets for their pharmaceutical products.43 While the medicalization of benign conditions has been around since before the current iteration of corporate medical influence, its expansion to pain medicine to shore up a company’s profits relates directly to our original question of “what should we do about pain?” When the answer to this question is neatly supplied by Big Pharma (i.e., “buy and prescribe our product”), the role of the clinician and their ethical obligations is lost. Because pain itself is a subjective metric, it is especially vulnerable to disease inflation. It is not value-neutral to develop new illness criteria, especially when doing so can launch patients into a cycle of poor management, dependence, and addiction.44

Insurance/Payers Just as clinicians are vulnerable to the influence of pharmaceutical companies, so are insurance agents. Companies are in the business of negotiating to get their medications covered by insurance, and more effective marketing is associated with more insurance authorization.45 It has become increasingly difficult for patients to get effective, but not flashy, pain therapies like rehabilitation reimbursed.46 Insurance companies tend to reimburse procedural interventions at higher rates than counseling and medication management, and multidisciplinary pain teams, which have been well-documented as being highly effective in pain management, struggle to gain hospital support because they are under-reimbursed.47 Health care insurers, like pharmaceutical companies, have a financial incentive for favoring certain treatments over others, and this incentive does not reliably track good patient care. And because pain is often maldynic, it becomes an easy target for claim denial and low coverage.48

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In addition to all of these incentives, clinicians often operate in a financial black box, not knowing the cost of the therapies they prescribe, leaving patients either saddled with bills or forced to choose sub-optimal treatment modalities that respond to financial pressures rather than a sound evidence base. Clinicians could do everything in their power to make the “right” choice in prescribing, but if certain therapies aren’t covered, their responsible clinical decision-making may never translate into good patient care. Inadequate insurance coverage limits the therapies that patients can realistically access, leaving the question of “what to do about pain?” once again answered by industry rather than the patient’s best interests.

Education In order for pain care to be accessed, it not only needs to be affordable, but clinicians need to be educated on the topic. Complex pain management often falls to primary care physicians, almost 40 percent of whom feel dissatisfied with their ability to adequately manage these needs.49 Many medical schools and residency programs fail to teach pain management, leaving clinicians with knowledge deficits around responsible pain management strategies.50 Strategies like rehabilitation and cognitive behavioral therapy have proven to be effective for the management of some types of pain, but knowledge deficits around how and when to use these therapies coupled with an understanding that they are less likely to be reimbursed by insurance presents a significant disincentive to their use. Furthermore, chronic pain management does not fit perfectly comfortably within the educational framework of the West, which emphasizes curative medicine.51 In pain management, cures may not always exist, leaving physicians frustrated. But physicians have two roles, both as curers and as healers.52 Though it may not always be possible to cure patients of their pain, clinicians are still obligated to try to heal them. Because pain management often falls into the realm of healing, and this is still a fundamental responsibility of the physician, there is an aspect of

pain management education that involves gaining comfort and proficiency with one’s healing role.

Policy As is the case with most of pain medicine, recent pain policy has largely revolved around opioids. Opioid policies in the 2010s have had a “chilling effect,” discouraging providers from prescribing opioids even in situations where they are warranted.53 These laws, colloquially known as MME (milligrams morphine equivalents) limits, force physicians to do more uncompensated paperwork in order to prescribe opioid analgesia above a certain MME limit. This may have the effect of sharply curbing opioid prescribing even when it’s justified. Not only can these policies stigmatize opioid use by discouraging their responsible use, but they also lead to the mismanagement of pain. Opioids are effective for certain patients, and those patients deserve to have safe access to them.54 These laws also leverage another fear with which clinicians operate: the fear of professional censure and legal retribution. If there is a risk of retribution for prescribing opioids, clinicians are less likely to prescribe.55 MME limits have chilling effects, but so do inquiries and notices from licensing boards, the Drug Enforcement Administration, and state justice departments. These entities create punitive environments for adequately treating pain. Pain policies to date can effectively tie clinicians’ hands, either explicitly or in effect, creating an environment where the “right” pain management choice may be time-consuming, professionally risky, or practically unavailable. While they arose from a scramble to curb the emerging opioid crisis, these policies may now actually increase pain mismanagement, once again leading clinicians to treat pain not based on their judgment of what is responsible pain medicine, but rather as a result of external, structural forces.

CO N C LU S I O N Our hope is that this conceptual landscaping makes clear how much work remains to be done on ethics Responsible Pain M edicine 

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in pain medicine, both given the difficulty of the issues already identified, as well as gaps in the literature. More particularly, however, the framing of the three categories of question types was utilized in an effort to draw attention to the relationships among them. What work is there to be done at the intersections? What difficulties are raised by noting the different kinds of questions we have been asking about pain medicine? Perhaps the most obvious point brought out by these three types of questions is that there is no single, overarching pain medicine philosophy that ties them together. In surveying the literature, we noticed that most articles focus on one type of question, and that relatively few authors write on issues in more than one of the categories. An important question, then, is: How much should these categories be in dialogue with one another? Answers to questions raised in one category often imply answers to questions in others: for instance, work in clinical ethics addressing trust and stigma are likely assuming philosophical views about pain; while other clinical ethics views about, say, how to treat patients on chronic opioid therapy likely have implications for policy. One way to categorize these types of questions, then, is as follows: a complete ethics of pain medicine would include (1) philosophical and conceptual work, (2) clinical ethics work, and (3) public health ethics and health policy work. Most clinicians and scholars are more focused on one type of question than the others, and so it makes sense that the issues get somewhat siloed. But given the relationships among them, it seems that more work across borders would be beneficial, and so we would like to encourage it. The labeling of categories (2) and (3) as clinical ethics and public health ethics, respectively, draws out the ways in which tension can form between them. Recognizing pain as a public health crisis (and so taking a structural, public health lens to pain) can be valuable in legitimizing complaints by patients; but as has happened in the past, it can also be taken to imply that certain clinical actions are appropriate—in particular, that clinicians ought to prescribe opioids more often for moderate to severe acute and chronic pain. This uptake of treating pain seriously 226 

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as being tied to aggressive opioid prescribing had detrimental effects on public health by spurring an increase in addiction and overdose. Now, however, the opposite has happened, and the structural/policy lessons have moved toward minimizing opioid use so as to avoid the harms of addiction and overdose. And these policies have also had unintended, harmful consequences, such as encouraging abrupt discontinuation of opioids and patient abandonment.56 The degree to which structural influence plays a role in clinical pain management, then, clearly illustrates the ways in which ethical issues are difficult to fully tackle in isolation. The lead author of this chapter has argued that it’s ethically impermissible to taper a stable, high-dose opioid therapy patient before they are ready (nonconsensually)57 but even if this is correct, it’s unclear what clinicians are to do with this information if policies or structural pressures make continued opioid prescribing professionally risky or even de facto impossible. There is also the higher-level question of how ethical goals from one category should be allowed to influence answers to questions in other categories. For instance, it could be argued that structural tools like opioid-prescribing guidelines are public health interventions, designed to prevent iatrogenic harms at the population level (such as an opioid addiction or overdose crisis). However, these tools offer clinical guidance, which is used by individual clinicians in the care of individual patients. And generally, the wisdom of the day is that clinicians ought to employ patient-centered care and to advocate for their patients. But of course, any individual patient may best be served by not following the guidelines. How, then, is the clinician to balance these competing moral pressures? They are being asked to simultaneously wear their clinical hat and advocate for their patient and their public health hat and be stewards of a substance with a significant risk profile. Finally, there is rich normative work to be done in evaluating the moral responsibility of individuals in the context of structural problems. The very fact of all the problems raised in category (3) regarding payers, education, policy, and the like leads clinicians to feel their hands are tied. In doing the work of

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pain medicine ethics, many of us often want to give concrete guidance for clinicians. But if that guidance isn’t actionable (or takes monumental effort) as a result of structural forces, focusing on the individual can feel a bit like victim-blaming: clinicians are at the mercy of payers, regulators, the U.S. Drug Enforcement Administration, and more, and now we want to blame them for not doing what we think they should? So how ought we to navigate the need and desire to continue working on clinical ethics issues in pain medicine without scapegoating individual clinicians for systemic failures? Obviously, there is far more work to be done than the few projects we have mentioned or sketched here. Indeed, the primary goal of this chapter has been to show that for those of us interested in pain medicine, ethical issues are real and everywhere. The very endeavor of pain medicine is a moral one, motivated by a desire to reduce suffering. But the very nature of that suffering is difficult to understand, let alone treat. And as various structural forces of our society have influenced the practice of pain medicine, that project has become yet more difficult. Pain medicine is hard. So are the ethical issues.

N OTE S 1. Jeremy Bentham, The Collected Works of Jeremy Bentham: An Introduction to the Principles of Morals and Legislation (Clarendon Press, 1996); John Stuart, Mill, “1998. Utilitarianism” (1863). 2. Mary Moore Free, “Cross-Cultural Conceptions of Pain and Pain Control,” in Baylor University Medical Center Proceedings (Taylor & Francis) 15, no. 2 (2002): 143–45; Lee S. Simon, “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research,” Journal of Pain & Palliative Care Pharmacotherapy 26, no. 2 (2012): 197–98. 3. Drew Leder, “The Experiential Paradoxes of Pain,” Journal of Medicine and Philosophy 41, no. 5 (2016): 444–60. 4. Free, “Cross-Cultural Conceptions of Pain and Pain Control.” 5. Simon, “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research.” 6. Simon, “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research”; Mariagrazia D’ippolito, Adriano Purgato, and Maria Gabriella Buzzi, “Pain and Evil: From Local Nociception to

Misery Following Social Harm,” Journal of Pain Research 13 (2020): 1139. 7.  “Congenital Insensitivity to Pain with Anhidrosis,” Genetic and Rare Diseases Information Center. U.S. Department of Health and Human Services, accessed January 26, 2022, https://rarediseases.info.nih.gov/diseases/3006 /congenital-insensitivity-to-pain-with-anhidrosis. 8.  Srinivasa N. Raja et al., “The Revised International Association for the Study of Pain Definition of Pain: Concepts, Challenges, and Compromises,” Pain 161, no. 9 (2020): 1976–82. 9.  Michael A. Ashburn and Peter S. Staats, “Management of Chronic Pain,” The Lancet 353, no. 9167 (1999): 1865–69. 10.  D’ippolito et al., “Pain and Evil: From Local Nociception to Misery Following Social Harm.” 11.  Franco A. Carnevale, “A Conceptual and Moral Analysis of Suffering,” Nursing Ethics 16, no. 2 (2009): 173–83; Charlotte Mary Duffee, “Pain versus Suffering: A Distinction Currently without a Difference,” Journal of Medical Ethics 47, no. 3 (2021): 175–78. 12.  Duffee, “Pain versus Suffering: A Distinction Currently without a Difference”; Clara Costa Oliveira, “Understanding Pain and Human Suffering,” Revista Bioética 24 (2016): 225–34. 13.  Leder, “The Experiential Paradoxes of Pain.” 14.  Tae Kyun Kim, “Practical Statistics in Pain Research,” The Korean Journal of Pain 30, no. 4 (2017): 243. 15.  Kathryn A. Birnie, Patrick J. McGrath, and Christine T. Chambers, “When Does Pain Matter? Acknowledging the Subjectivity of Clinical Significance,” Pain 153, no. 12 (2012): 2311–14. 16.  Daniel S. Goldberg, “Pain, Objectivity and History: Understanding Pain Stigma,” Medical Humanities 43, no. 4 (2017): 238–43. 17. Steven D. Passik and Kenneth L. Kirsh, “Double Standard for Access to Pain Management,” AMA Journal of Ethics 10, no. 1 (2008): 49–54. 18.  Ronald Hirsch, “The Opioid Epidemic: It’s Time to Place Blame Where It Belongs,” Missouri Medicine 114, no. 2 (2017): 82; Anna Lembke, Drug Dealer, MD: How Doctors Were Duped, Patients Got Hooked, and Why It’s So Hard to Stop (JHU Press, 2016). 19. Travis N. Rieder, “Is Nonconsensual Tapering of High-Dose Opioid Therapy Justifiable?,” AMA Journal of Ethics 22, no. 8 (2020): 651–57. 20.  Centers for Disease Control and Prevention, “CDC Guideline for Prescribing Opioids for Chronic Pain— United States, 2016,” MMWR Recommendations and Reports 65, no. 1 (2016): 1–49; Russell K. Portenoy and Kathleen M. Foley, “Chronic Use of Opioid Analgesics in Non-malignant Pain: Report of 38 Cases,” Pain 25, no. 2 (1986): 171–86; Shannon M. Grap et al., “Acute Postoperative Pain Management after Major Limb Amputation in a Pediatric Patient: A Case Report,” Journal of PeriAnesthesia Nursing 34, no. 4 (2019): 801–9. Responsible Pain M edicine 

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21. “Opioid Prescribing Recommendations,” Michigan OPEN, accessed January 26, 2022, https://michigan-open .org/prescribing-recommendations/. 22.  James Giordano and Michael E. Schatman, “A Crisis in Chronic Pain Care: An Ethical Analysis. Part Three: Toward an Integrative, Multi-disciplinary Pain Medicine Built around the Needs of the Patient,” Pain Physician 11, no. 6 (2008): 775–84. 23.  Travis N. Rieder, “Opioids and Ethics: Is Opioid-Free the Only Responsible Arthroplasty?,” HSS Journal® 15, no. 1 (2019): 12–16. 24.  Michael A. Erdek and Peter J. Pronovost, “The Need for an Ethics Framework for the Use of Opioids in the Treatment of Chronic Nonmalignant Pain,” Pain Management 7, no. 4 (2017): 229–31. 25.  Goldberg, “Pain, Objectivity and History: Understanding Pain Stigma”; Daniel Z. Buchman, Anita Ho, and Daniel S. Goldberg, “Investigating Trust, Expertise, and Epistemic Injustice in Chronic Pain,” Journal of Bioethical Inquiry 14, no. 1 (2017): 31–42. 26.  Chloë FitzGerald and Samia Hurst, “Implicit Bias in Healthcare Professionals: A Systematic Review,” BMC Medical Ethics 18, no. 1 (2017): 1–18; Jennifer Stuber, Ilan Meyer, and Bruce Link, “Stigma, Prejudice, Discrimination and Health,” Social Science & Medicine (1982) 67, no. 3 (2008): 351. 27.  Erving Goffman, Stigma: Notes on the Management of Spoiled Identity (Simon and Schuster, 2009); Gordon Willard Allport, Kenneth Clark, and Thomas Pettigrew, “The Nature of Prejudice” (Addison-Wesley, 1954). 28.  Allport, Clark, and Pettigrew, “The Nature of Prejudice.” 29.  Dipesh P. Gopal et al., “Implicit Bias in Healthcare: Clinical Practice, Research and Decision Making,” Future Healthcare Journal 8, no. 1 (2021): 40; “Bias Definition & Meaning,” Dictionary.com, accessed January 26, 2022, https://www.dictionary.com/browse/bias. 30. Jasmine R. Marcelin et al., “The Impact of Unconscious Bias in Healthcare: How to Recognize and Mitigate It,” The Journal of Infectious Diseases 220, Supplement 2 (2019): S62–S73; Elizabeth N. Chapman, Anna Kaatz, and Molly Carnes, “Physicians and Implicit Bias: How Doctors May Unwittingly Perpetuate Health Care Disparities,” Journal of General Internal Medicine 28, no. 11 (2013): 1504–10. 31.  Diane E. Hoffmann and Anita J. Tarzian, “The Girl Who Cried Pain: A Bias against Women in the Treatment of Pain,” Journal of Law, Medicine & Ethics 29, no. 1 (2001): 13–27. 32.  Kelly M. Hoffman et al., “Racial Bias in Pain Assessment and Treatment Recommendations, and False Beliefs about Biological Differences between Blacks and Whites,” Proceedings of the National Academy of Sciences 113, no. 16 (2016): 4296–301. 33.  Miranda Fricker Epistemic Injustice: Power and the Ethics of Knowing (Oxford University Press, 2007). 228 

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34.  Buchman, “Investigating Trust, Expertise, and Epistemic Injustice in Chronic Pain.” 35. Darcy, Copeland, “Drug-Seeking: A Literature Review (and an exemplar of stigmatization in nursing),” Nursing inquiry 27, no. 1 (2020): e12329; Pamela L. Pentin, “Drug Seeking or Pain Crisis? Responsible Prescribing of Opioids in the Emergency Department,” AMA Journal of Ethics 15, no. 5 (2013): 410–15. 36. Adrienne Sabine Beck, Larisa Svirsky, and Dana Howard, “‘First Do No Harm’: Physician Discretion, Racial Disparities and Opioid Treatment Agreements,” Journal of Medical Ethics (2021). 37. Passik and Kirsh, “Double Standard for Access to Pain Management.” 38.  Jan Hoffman and Katie Benner, “Purdue Pharma Pleads Guilty to Criminal Charges for Opioid Sales,” The New York Times. October 21, 2020. https://www .nytimes.com/2020/10/21/health/purdue-opioids-crim inal-charges.html; Gabrielle Emanuel, “Pharmaceutical Executives Face Prison Time in Case Linked to Opioid Crisis,” NPR, January 13, 2020. https://www.npr.org /2020/01/13/795200200/pharmaceutical-executives-face -prison-time-in-case-linked-to-opioid-crisis. 39.  Joseph M. Gabriel and Daniel S. Goldberg, “Big Pharma and the Problem of Disease Inflation,” International Journal of Health Services 44, no. 2 (2014): 307–22. 40.  Rebecca L. Haffajee, “The Public Health Value of Opioid Litigation,” Journal of Law, Medicine & Ethics 48, no. 2 (2020): 279–92. 41.  Abby Vesoulis, “Elizabeth Warren Unveils $100 Billion Plan on Opioid Crisis,” Time, April 30, 2021, https:// time.com/5585418/elizabeth-warren-opioid-crisis-bill/. 42.  Justin M. Thomas, “Self-Regulation and the Relationship of Physicians with the Pharmaceutical Industry,” AMA Journal of Ethics 7, no. 4 (2005): 288–93. 43.  Gabriel and Goldberg, “Big Pharma and the Problem of Disease Inflation.” 44.  James Giordano and Michael E. Schatman, “An Ethical Analysis of Crisis in Chronic Pain Care: Facts, Issues and Problems in Pain Medicine; Part I,” Pain Physician 11, no. 4 (2008): 483–90. 45.  Mary Lou Taylor, “The Impact of the “Business” of Pain Medicine on Patient Care,” Pain Medicine 12, no. 5 (2011): 763–72. 46. Ibid. 47.  James Giordano, “Ethical Insights to Rapprochement in Pain Care: Bringing Stakeholders Together in the Best,” Pain Physician 12 (2009): E265–E275. 48.  Michael E. Schatman, “The Role of the Health Insurance Industry in Perpetuating Suboptimal Pain Management,” Pain Medicine 12, no. 3 (2011): 415–26. 49. Allen Lebovits, “Maintaining Professionalism in Today’s Business Environment: Ethical Challenges for the Pain Medicine Specialist,” Pain Medicine 13, no. 9 (2012): 1152–61.

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50. Lina Mezei, Beth B. Murinson, and Johns Hopkins Pain Curriculum Development Team, “Pain Education in North American Medical Schools,” The Journal of Pain 12, no. 12 (2011): 1199–208. 51. Lebovits, “Maintaining Professionalism in Today’s Business Environment.” 52.  Eric J. Cassell, “The Nature of Suffering and the Goals of Medicine,” The New England Journal of Medicine 306 (1982): 639–45; Tom A. Hutchinson, Nora Hutchinson, and Antonia Arnaert, “Whole Person Care: Encompassing the Two Faces of Medicine,” CMAJ 180, no. 8 (2009): 845–46. 53. Michael E. Schatman and Hannah Shapiro, “Damaging State Legislation Regarding Opioids: The Need to Scrutinize Sources of Inaccurate Information Provided to Lawmakers,” Journal of Pain Research 12 (2019): 3049. 54.  Daniel S. Goldberg, “Toward Fair and Humane Pain Policy,” Hastings Center Report 50, no. 4 (2020): 33–36.

55.  Diane E. Hoffmann and Anita J. Tarzian, “Achieving the Right Balance in Oversight of Physician Opioid Prescribing for Pain: The Role of State Medical Boards,” The Journal of Law, Medicine & Ethics 31, no. 1 (2003): 21–40. 56. U.S. Food and Drug Administration, “FDA Identifies Harm Reported from Sudden Discontinuation of Opioid Pain Medicines and Requires Label Changes to Guide Prescribers on Gradual, Individualized Tapering,” FDA Drug Safety Communications, 2019, https://www.fda.gov /drugs/fda-drug-safety-podcasts/fda-identifies-harm-re ported-sudden-discontinuation-opioid-pain-medicines -and-requires-label-changes; Deborah Dowell, Tamara Haegerich, and Roger Chou, “No Shortcuts to Safer Opioid Prescribing,” New England Journal of Medicine 380, no. 24 (2019): 2285–87. 57. Rieder, “Is Nonconsensual Tapering of High-Dose Opioid Therapy Justifiable?”

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CHAPTER 21

Pandemic Ethics Anne Lykkeskov

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his chapter will look at the ethical issues relating to the handling of global pandemics through the example of the Covid-19 pandemic which hit the world from 2019 and was met with extensive lock-down policies the world over, severely affecting every citizen of the world. Even after the first vaccines were approved in late 2020, and the countries of the north achieved high vaccination numbers and less stringent lock-down measures, new variants of the disease kept surfacing, inciting new lockdowns. What had seemed like a temporary measure to combat Covid19 dragged on, and as the realization that Covid-19 will be part of our lives from now on was slowly taking hold, exit strategies seemed elusive. There were even signs that where lockdowns are lifted, there is a rise in other respiratory viruses such as influenza or respiratory syncytial virus, possibly due to an all-time low level of influenza activity in 2020.1 Some scientists warn that the suppression of viruses has been far from beneficial, because it can “promote the rise of more serious, longer-lasting epidemics that start sooner.”2 The world seemed to be taken aback by the pandemic, and politicians reacted with urgency to contain the situation. But given that the likelihood of new pandemics in the foreseeable future is very high, it is important to reflect on how the countries of the world managed the Covid-19 pandemic, and what 230

lessons can be learned on how the next one ought to be addressed. This chapter will look at some of the main ethical issues involved in preparing for and responding to pandemic diseases, notably the dilemmas involved in the triage and allocation of scarce resources in the health sector as well as in society at large. It will also look at the extent to which the values of equality in health (nationally and internationally) and freedom rights can justifiably be restricted in order to achieve intended public health goals.

WE R E T H E R E WA R N I N G S O F N E W PA N DE M I C S? DI D T H E Y L E A D TO G R E AT E R P R E PA R E DN E S S? There is a general awareness that outbreaks of infectious diseases have increased in the past decades due to a number of demographic changes. Sikkema et al. list the main drivers as: • Population growth and the ensuing demand for increased food production • Land use and changes in agricultural practices • International travel and trade • Climate change and weather • International migration3

Efforts have been made to prepare for epidemics, and for the past twenty years epidemiologists as well as biosecurity and public health experts have been outlining preparedness plans. Organizations such as the WHO have issued reports that aim to embed “ethics within the integrated global alert and response system for epidemics.”4 However, when The Global Health Security Index published the first comprehensive benchmark of health security and related capabilities across 195 countries in 2019, their main finding was that “no country is fully prepared for epidemics or pandemics, and every country has important gaps to address.”5 It is, however, evident that high-income countries score higher on overall preparedness. A major obstacle is that pandemic preparedness requires allocation of vast resources, which are not available in poorer countries that are not even able to provide basic health care.6 If epidemics are not contained in poorer countries, there will be a risk of aggressive viruses spreading and causing pandemics. So resource allocation is at the heart of managing infectious disease outbreaks.

PR I ORITIZ ATI O N O F SC A RCE RESO U R CE S— H EA LTH AND SO CI E T Y In the late winter of 2020, almost all of the world’s countries introduced comprehensive measures to contain the spread of Covid-19.7 Measures that substantially restricted the freedoms of their citizens, including lockdowns, extensive school closures, work-from-home guidelines for office workers, compulsory mask-wearing, shut-down of most social and cultural activities, banning of public gatherings and restriction of citizens’ access to leave their homes; travel restrictions nationally and internationally; digital tracing of citizens in some countries, and so on. Most countries restructured their health services to accommodate an expected large influx of Covid19 patients, and most rich countries introduced huge economic compensation schemes to those who lost income because of lockdowns and invested heavily

in prevention measures and vaccines. Despite the willingness to allocate unprecedented resources to combat the virus, the situation still required prioritization of resources both within the health sector and in society at large. And of course, the resources allocated in themselves represented a prioritization with implications far into the future. Thus, Covid-19 had a huge impact on the lives of almost every citizen in the world, and on the economy of every country. However, the ensuing lockdowns had very different effects in different countries, corresponding to those countries’ pre-existing economic and health resource situation.8 Although Covid-19 is, relatively speaking, not a very deadly disease, with case-fatality ratios of 0.5–3 percent in most rich countries,9 a proportion of patients will experience severe respiratory symptoms and be in need of intensive care admission. In a situation with rapid spread of the virus, there is a risk of overwhelming intensive care units even in well-equipped health systems. Thus, the world was shocked by accounts from hospitals in Italy being unable to provide ventilators to everyone in need in the winter of 2020, and this was the situation governments all over the world wanted to avoid by promptly implementing extensive lockdown policies. The unprecedented allocation of resources to combat the pandemic, of course, entailed moral choices and raised normative questions of distributional fairness and equality.

Triage and Prioritization in the Health System Covid-19 put pressure on health services in a range of countries and accentuated prioritization of scarce resources both at the individual level (e.g., which patient should be allocated a ventilator) and the organizational level (e.g., reallocation of hospital staff to meet the challenges of the pandemic). The need to actively prioritize scarce resources in the health system has been recognized for decades, owing to the realization that traditional practices in effect prioritized in an indirect and hidden—and therefore often unjust—manner. This has led to the Pandemic E thics 

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realization that priority setting should be made explicit and systematic by ranking alternatives in accordance with normative and technical rules.10 On the normative side, different positions on distributive justice play into the discussion on how to secure a just allocation of scarce medical resources, for example: Egalitarianism is the view that people should be treated equally, thus valuing equality directly.11 However, the term is ambiguous, because there are many different ways persons can be treated equally.12 One is equality of opportunity, which in health care would imply that people should have equal chances at receiving scarce resources, meaning that these should be distributed via lottery or on a first-come-first-served basis.13 Prioritarianism is the view that benefitting people matters more the worse off these people are,14 therefore priority should be given to the worst off.15 This makes the definition of “worst off” very crucial, which I shall return to in the following. Prioritarians could be said to value equality indirectly:16 everyone should not receive the same amount of scarce resources, the worst off should be prioritized. Sufficientarianism, following Harry Frankfurt,17 states that whether or not a distribution of goods is just depends not on everyone having the same amount of some good, but rather on whether everyone has enough of this good. Thus, “equality is not, as such, of particular moral importance.” Utilitarianism is the view that goods should be distributed in the way that leads to the greatest total well-being. Even though utilitarianism is egalitarian in the sense that all persons count equally, if one person gets more well-being from receiving a scarce resource, this person should be prioritized. In this respect, utilitarianism gives no value to equality in the distribution of well-being.18 All of the principles have weaknesses and, in some situations, will be in conflict with one another. For example, according to the principle of equality, ventilators should be allocated on a first-come, firstserved basis, whereas the utilitarian principle of maximizing well-being would prioritize scarce resources to those who were likely to live the highest number of quality life years after the treatment. The latter 232 

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principle is often referred to as the QALY principle and has been adopted by several health services in the world. It would normally indicate that a younger person would be given priority over an older one. Prioritarianism has a number of more specific classifications: If “‘being worst off” is defined as having lived less life-years, prioritarianism would, like utilitarianism, favor the youngest, but for the reason that they have had the shortest lives.19 Favoring the young in health care would, of course, conflict with the principle of equal distribution. A second form of prioritarianism defines “being worst off” as “having the worst future health prospects if left untreated.” Therefore, Persad et al. counts the so-called Rule of Rescue principle as prioritarian.20 This principle holds that priority should be given to those identifiable individuals who visibly suffer the most at present, even if protecting others in the future would be more cost-effective. The principle is controversial, the main criticism raised against it being that in focusing on identifiable individuals, it unfairly discriminates against the less visible “statistical” individuals, for example, those who cannot get access to media attention. The principle further contrasts with the impersonal perspective of the egalitarian view, as well as with the utilitarian view, which holds that measures that are expected to produce the same number of QALYs are considered equally valuable.21 A third form of prioritarianism is relevant here; namely social justice prioritarianism, which defines “being worst off” in social and economic terms. It holds that priority should be given to the well-being of the socially disadvantaged,22 and is therefore also relevant to the wider discussion relating to the prioritization of societal resources in a pandemic situation. I shall return to this discussion later in the chapter. First, I shall look at the tension between prioritarianism and impartiality in relation to the Covid-19 discussions. PRIORITARIANISM AND COVID-19 HEALTH PRIORITIZATION

It could be argued that the enormous attention Covid-19 received during the winter of 2020 led to

a Rule of Rescue situation, where attention—and thereby medical resources—were diverted to Covid19 at the expense of other less visible, but equally or even more serious diseases.23 This claim could be supported empirically by emerging evidence pointing to an unexpected drop in patients consulting their medical practitioner with early symptoms of onset or worsening of a number of diseases during lockdown. A worrying development since delayed or avoided medical care might increase morbidity and mortality risks associated with treatable health conditions both in the short and in the long term. Some examples are as follows: In an American study from 2020, 40.9 percent of respondents reported having delayed or avoided any medical care, including urgent or emergency care (12.0%) and routine care (31.5%), because of concerns about Covid-19.24 In Denmark, a study following the first lockdown in 2020 found that the registered new-onset cases of atrial fibrillation dropped by 47 percent compared to the same period in 2019.25 Another study found a reduction in the number of incident cancer diagnoses by one-third during the first three months of the Covid-19 pandemic.26 In the United Kingdom, referrals for suspected cancer decreased by up to 84 percent during the first lockdown in 2020. Different modeling studies have calculated the lives and life-years lost by delayed diagnosis and treatment.27 One study modeled different periods of delay and found that in a worst-case scenario, with a six-month delay in patient diagnosis for an average of cancer types, up to 9,280 lives and 173,540 life-years would be lost in the future because of the delays.28 Such drops in diagnoses of medical conditions cannot be explained exclusively by resources being redirected toward Covid-19 preparedness, because in some cases the pathways to treatment were still available. In many instances, people have made the choice to stay away from the health services, and different factors probably play a part in explaining this, including fear of infection, assumptions that the doctors were busy with Covid-19 patients, or anxiety over Covid-19 overshadowing other emerging symptoms.

But in many cases, patient hesitancy was not the explanation for lack of treatment, for example, in the mental health area, which was hit by the Covid situation in multiple ways. First of all, 93 percent of the world’s countries reported disruptions in one or more of their mental, neurological, and substance use services. But, simultaneously, the demand for these services rose because, on the one hand, the pandemic situation provoked increased levels of relapse in people with pre-existing mental health conditions. On the other hand, the mental strain of the pandemic inflicted mental health problems in people without previous mental health disorders.29 Data from many countries support these findings: A survey from the United Kingdom showed that across the population the prevalence of clinically significant levels of mental distress rose from approximately 19 percent in 2018–2019 to 27 percent in April 2020.30 Another study from the United Kingdom examined short-term consequences for mental health during the first four to six weeks of social distancing measures being introduced, and found an overall increase in reported stress, anxiety, and depression.31 A survey from the United States showed that symptoms of anxiety disorder and depressive disorder increased considerably during April–June 2020, compared to the same period in 2019, with approximately 31 percent reporting symptoms of anxiety disorder or depressive disorder related to the pandemic.32 This short sample of results all support the hypothesis that other medical areas were given a lower priority when Covid-19 measures were implemented, without due consideration being given to whether this constituted a just prioritization. From an egalitarian perspective, there does not seem to be good arguments for favoring Covid-19 patients over those with other serious diseases. From a maximizing perspective, an important goal of policy is to generate as much benefit as possible for as long as possible. Therefore, calculations of the number of life-years saved by different uses of scarce resources should be central. Jenkins et al. point to the age profiles of Covid19 and cancer casualties. The average age of patients dying from Covid-19 was 78.7 years for males and Pandemic E thics 

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82.5 years for females in the United Kingdom, meaning that the number of lives saved for the average Covid-19 patient would be approximately 9 years for men and 8 years for women (although presumably lower since 91% of Covid-19 patients suffered from preexisting conditions).33 They contrasted this to the results mentioned before, that in a worst-case scenario with a six-month delay in patient diagnosis for an average of cancer types, up to 9,280 lives and 173,540 life-years could be lost in the future, inferring an average life expectancy of around nineteen years.34 Another study found that the QALY losses from lockdown exceeded the QALY losses from direct Covid19—although these results were based on a scenario where Covid mitigations were in place. Casualties from Covid-19 would have been considerably higher if this had not been the case.35 If you think that an important goal of health policy is to maximize benefits, as do Jenkins et al., the relevant unit of measurement of casualties, when discussing Covid-19 policies, should be life-years lost, rather than lives lost. They therefore criticize the debate for neglecting this aspect, which they regard as crucial to Covid-19 policies, more thoroughly.36 More research should be done in this area.

Prioritization of Societal Resources This section will move on from discussing the fairness of Covid-19 prioritizations within the health sector, and on to looking at the moral implications of the policies on the whole of society. In doing so, the scope should be broadened from only focusing on avoiding deaths to avoiding severe losses of quality and length of life as well. School closures have had devastating effects on the short- and long-term quality of lives—including on the mental health—of young people all over the world during Covid-19. If the goal is maximizing total welfare, it is relevant to discuss how such huge losses of quality of life in the young population (with its potential long-term consequences) can be weighed against the benefit of preventing deaths in the older population during a pandemic.

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In the following, I shall start by looking at this discussion and then move on to look at the Covid19 policies in light of arguments that these policies should favor the socially worst off. FAVORING THE YOUNGEST—SCHOOL CLOSURES

Since the early stages of the Covid-19 pandemic, medical evidence has shown a clear correlation between age and the severity of the disease,37 with the infection fatality rate for children and younger adults being very low and increasing with age. One meta-analysis found that the fatality rate increases from 0.002 percent at age ten to 0.01 percent at age twenty-five to 0.4 percent at age fifty-five, 1.4 percent at age sixty-five, 4.6 percent at age seventy-five, and 15 percent at age eighty-five.38 Despite this, most countries have implemented school closures as a means to slow the transmission of the virus, reduce burdens on health care, and to protect the at-risk populations. The OECD has pointed out that worldwide, Covid-19 containment measures have forced school closures in 188 countries, heavily disrupting the learning process of more than 1.7 billion children. The consequences are long-lasting, especially for the most exposed children who may never return to school.39 These school closures have been implemented based on limited evidence of their beneficial effects. On the contrary, a study from one of the few countries, Sweden, that kept schools and preschools open during the pandemic period, found a low incidence of severe Covid-19 among children during the spring of 2020.40 And a systematic literature review by the same researcher found that children are unlikely to be the main drivers of the Covid-19 pandemic.41 A growing body of evidence shows that the school closures have had very serious adverse effects on children’s learning as well as on a range of other factors stretching from loneliness to mental health problems, self-harm, and suicides, and that the measures disproportionately affect disadvantaged children.42 Schools are very important in children’s lives for many other reasons than learning. They are also,

in the words of Prof. Russell Viner, president of the Royal College of Pediatrics and Child Health in the United Kingdom, “places where kids socialize, develop emotionally and, for some, a refuge from troubled family life.”43 A number of studies document the negative effects school closures have on children on many fronts: For example, Varga et al. looked at the levels of loneliness as a prominent risk factor for future anxiety and depression in four countries in the beginning of the lockdown.44 Across all four countries, the highest levels of loneliness were reported by those younger than thirty years of age: 24.8, 16.3, 13.2, and 31.6 percent for Denmark, France, the Netherlands, and the United Kingdom, respectively. In a longitudinal study from the United Kingdom, O’Connor et al. concluded that the increasing rates of suicidal thoughts, especially among young adults, were concerning. Their results further showed that “women, young people (18–29 years), those from more socially disadvantaged backgrounds and those with pre-existing mental health problems have worse mental health outcomes during the pandemic across most factors.”45 In regard to school closures, studies from around the world showed a similar picture: that (some) students experienced immense problems with following home schooling. For example, in the United States, chronic absenteeism is already a problem, especially in deprived neighborhoods. With schooling being conducted remotely, “more students than ever are missing class—not logging on, not checking in or not completing assignments.”46 These students may already struggle to keep up if they have parents who lack educational resources to help with schoolwork, or families where abuse or violence prevents them from learning. But even without such problems, their homes might lack digital equipment, or access to internet and private spaces to concentrate on their schoolwork. If children from disadvantaged backgrounds are set back in terms of learning, it will negatively affect social mobility and have long-term adverse effects on social equality. One serious effect of this shown by multiple studies is that well-educated adults have

better health and lifespans compared to their less-educated peers.47 There is a body of evidence documenting the seriousness of the adverse effects school closures have on children and young people. At the same time, the lockdown policies do not seem to benefit the young, since they have a very low mortality risk from Covid-19. This seems to be recognized by governments who tend to motivate school closures by the effort to slow transmission of the virus and protect at-risk populations, mainly the older citizens, from fatalities. The policies can therefore be seen as an unjust prioritization of the welfare of the older group over the young. Even if evidence can be produced that school closures, in fact, serve to effectively lower the transmission rate and save lives, mainly in the older population, we should ask if this could not be achieved by other means, such as constraining the movements only of the at-risk groups instead of the whole of society. Savulescu et al. argues that this kind of age discrimination would not be unjust, because it would be based on a morally relevant difference between the older and the younger group: that the elderly have a high risk of serious outcomes from Covid-19, which younger groups do not have. They argue that “to continue to require everyone to be locked down is to engage in levelling down equality”48—that is to achieve equality by making sure that no one is better-off than the currently worst off, even if no one benefits from this. When young people experience increases in suicides, mental health issues, loss of learning, and loss of social mobility, again leading to shorter lives, the long-term losses of life-years and quality of life will be high. From a principle of maximizing welfare, as well as from a principle of prioritizing the young, there is reason to question the moral permissibility of school closures. Given that the consequences of school closures will be felt the most by the already disadvantaged, they would also seem to contrast with the principle of equality of opportunity and the principle of favoring the worst off.

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FAVORING THE WORST OFF—LOCKDOWNS

It has been argued, for example, by Ben Bramble,49 that it is the socio-economically disadvantaged who are most likely to catch Covid-19 if lockdowns are lifted, because they would be most financially pressured to go back to work. Therefore, lockdowns could be defended from a social justice prioritarian view. There is indeed evidence that socioeconomic factors play a role in vulnerability to Covid-19. Several studies have documented a correlation between socioeconomic factors such as education level, racial minority status, household composition, environmental factors, and higher rates of both Covid-19 cases and fatalities.50 However, it is a complicated relation because there is also evidence that the worst off suffers most from the lockdowns imposed to contain the disease. This is true in rich countries and even more so in the world’s least-developed countries. As already mentioned, children from disadvantaged backgrounds had the worst mental health outcomes during the pandemic, and this group was most seriously set back by school closures, which are part of the lockdown policies. Closing schools is also reported to reinforce other inequalities, notably gender inequality both in regard to mothers being charged with the primary responsibility of homeschooling and extra household work,51 and in regard to girls being affected most in terms of learning loss.52 The UN reports that globally the pandemic is deepening pre-existing gender inequalities and exposing vulnerabilities in social, political, and economic systems.53 It is worth noting, as does the European Parliament, that “it is not the virus itself that causes socio-economic impacts on women, but rather the mechanisms introduced by administrations to mitigate against disease transmission which cause the downstream effects which have disproportionately affected women.”54 When taking the global perspective, it becomes even more evident that the lockdown policies severely hit the worst off. In countries with no universal health service or government schemes of economic support during lockdowns, the poorest day 236 

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laborers were in reality forced to choose between starving to death during the lockdown or taking their chances with going out and acquiring Covid-19.55 Another factor comes from the fact that many cities in the developing world are so dense that the virus will spread rapidly even if everyone stays at home. This has led to warnings that lockdowns have no positive effects in third world countries and will only lead to more suffering.56 On top of these problems, poorer countries have experienced setbacks in their health systems from international lockdowns. An example is the fight against tuberculosis (TB), the world’s most deadly infectious disease, which claims more than a million lives each year. However, in 2020, the WHO reported negative impacts on essential TB services including the reallocation of human, financial, and other resources from TB to the Covid-19 response; reassignment of staff to Covid-19 related duties; and reallocation of budgets and reducing the number of health facilities providing care for people with TB. This led to sharp drops in people being diagnosed with TB in several high TB-burden countries. Modeling done by the WHO suggests that a 50 percent drop in TB case detection over three months could result in 400,000 additional TB deaths in 2020 alone.57 The same picture is seen in the fight against HIV and malaria with the Global Fund reporting in 2021 that Covid-19 is reversing many hard-fought gains in the fight against these diseases.58 Prevention campaigns have equally been disrupted. Lockdowns have caused mass vaccination campaigns, for example, measles, polio, and meningitis, to be halted, “leaving millions of children at increased risk of deadly, preventable diseases.”59 It is too soon to measure the direct increases in illness and deaths, and researchers must rely on indirect measures, but these “data suggest that the knock-on effects of the pandemic could be larger than those caused by COVID-19 itself—and that they will linger long after the pandemic has ended.”60 In conclusion, the argument for lockdowns being just because they protect the health and living conditions of the worst off seems wanting, when considering the severe side effects of isolation for groups

such as children and the young, women, and those suffering from other illnesses than Covid-19 in rich countries. And, as we have seen, when considering the worst-off people of the world, lockdowns seem to affect them fatally both in terms of living conditions and in terms of prevention and treatment for other diseases, while not providing any positive effects for poor people living in crowded conditions.

TR ACING AP P S A ND IN DIVIDUAL F R E E D O M A means to reduce the need for general lockdowns and their ensuing ethical problems described in this chapter could be found in the use of digital tracing of individuals with the purpose of identifying people infected with the Covid-19 virus and their contacts. If citizens voluntarily used such tracing apps and simultaneously underwent frequent testing, it could enable targeted measures to isolate the ill and the potentially ill, instead of uniform lockdowns imposed on all citizens. There are, however, a number of caveats to this solution having to do with the extent of the data collected (proportionality), with the consent given to the apprehension of data (voluntariness) and with the extent to which adequate protections and oversights are in place (protection of privacy and liberty). To start with the last point, protection of privacy and liberty is already an important issue these years, given the extent to which private companies harvest data on all citizens from all our digital activities and use this data to make very intimate profiles on everyone and distribute this information commercially.61 The basis for data collection is the consent routinely given by users of digital services, without actually reading or understanding the terms, leading some commentators to liken the consent to “a license to freely exploit the individual’s personal data.”62 The problem is that users have no way of really knowing what is done with their data, even with the safeguards put in place by lawmakers in recent years; notably the EU’s General Data Protection Regulation from 2018.

Therefore, the question of who will own or be able to access the data collected from Covid-19 tracing apps, for how long they will keep the data and for which supplementary purposes they will apply them are central to the ethics of digital tracing of citizens to contain pandemics. Another central question regards the extent to which governments impose surveillance on citizens without their consent or use coercion when limiting their freedoms, for example, by imposing isolation by force. Some countries, such as South Korea, have “implemented tools for aggressive contact tracing, using security camera footage, facial recognition technology, bank card records, and global positioning system (GPS) data from vehicles and mobile phones to provide real-time data and detailed timelines of people’s travel.”63 Taiwan has rolled out a mobile phone-based “electronic fence” around quarantined people, turning their smartphones into ankle bracelets and having authorities call them twice a day to make sure they never leave home.64 While some restrictions of people’s freedoms can be justified if the risk of harm to others can be significantly reduced, there are serious questions about voluntariness and proportionality in relation to restrictions of this kind. Another central worry is that authorizations to perform surveillance and restrict freedoms during a pandemic could be prolonged or made permanent even when the crisis has passed. The costs could be huge in terms of breaches of public trust and weakening of democracies in the long term. Different proposals have been made for ethical guidelines for Covid-19 tracing apps. Morley et al. provide a list of questions that lawmakers should consider when contemplating using digital trackers on citizens to limit the transmission of infections during epidemics. The questions concern necessity, proportionality, accuracy, temporality, voluntariness and consent, anonymity, users’ ability to erase data, definition and limitation of purpose, compliance, equality of access, and decommissioning processes. These are important normative topics, which should be dealt with whenever the use of digital surveillance is considered.65

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CO NCLUSION

N OT E S

We were not well prepared for a pandemic, and due to the urgency of the situation, the policies were introduced without due consideration of whether they amounted to just prioritizations of health and societal resources. This was perhaps inevitable but makes it even more important to use the experience from this pandemic to be better prepared for the next, because scientists tell us to expect more pandemics in the future. It seems that the harms of school closures were so dire for the young, who were not in danger of fatalities from the disease, that this tool ought not be implemented in future pandemic situations where the risk profiles are similar to this one. The young ought to be prioritized when all cannot be saved, and harming the young severely to prolong the life of older citizens is morally very problematic, if this could be achieved by other means, such as isolating only the risk groups. The restructuring of the health service to accommodate for Covid-19 patients could also be argued to have been unjust when large numbers of patients suffering from other fatal illnesses did not get diagnosed or treated in time to avoid severe outcomes of their diseases. More research needs to be done into the long-term loss of lives from other illnesses before the justness of the restructuring can be assessed properly. Especially, when including the outcomes for the world’s poorest people, the lockdowns seem to have had disastrous effects and cost unacceptable amounts of lives, directly and indirectly, in terms of not getting treatment for other fatal illnesses. Both from the principle of equality of opportunity, the principle of maximizing welfare, and the prioritarian principles of favoring the young and favoring the worst off, general lockdowns seem to be morally problematic. Future pandemic responses ought to apply more limited isolation of at-risk groups. This could be facilitated by the digital tracking of infected individuals, depending on sufficient protection of privacy and freedoms of the applied applications being put in place.

1.  European Centre for Disease Prevention and Control, Seasonal Influenza 2020−2021, Annual Epidemiological Report (August 2021). 2.  I. Sanz-Muñoz et al., “Social Distancing, Lockdown and the Wide Use of Mask; A Magic Solution or a Double-Edged Sword for Respiratory Viruses Epidemiology?,” Vaccines 9, no. 6 (2021): 595. 3.  Reina S. Sikkema and Marion P. G. Koopmans, “Preparing for Emerging Zoonotic Viruses,” Encyclopedia of Virology 5 (2021). 4. WHO, Guidance for Managing Ethical Issues in Infectious Disease Outbreaks (Geneva: WHO, 2016) http://apps .who.int/iris/bitstream/10665/250580/1/9789241549837eng.pdf. 5.  Global Health Security Index, 2019, https://www .ghsindex.org/wp-content/uploads/2020/04/2019-Global -Health-Security-Index.pdf. 6. Amy Maxmen, “Has Covid Taught Us Anything about Preparedness?” Nature 596 (August 19, 2021). 7.  Oxford University’s Blavatnik School of Government, https://covidtracker.bsg.ox.ac.uk/stringency-map 8.  See, for example, Davide Furceri et al., “Initial Out. put Losses from the Covid-19 Pandemic: Robust Determinants,” IMF Working Paper WP/21/18 (2021). 9.  Johns Hopkins Corona Virus Resource Center, “Mortality Analysis,” https://coronavirus.jhu.edu/data/mortal ity, accessed September 16, 2021. 10.  Ellie Tragakes and Mikko Vienonen, “Key Issues in Rationing and Priority Setting for Health Care Services (WHO Regional Office for Europe, 1998). 11. John Broome, “Equality versus Priority: A Useful Distinction,” Economics and Philosophy 31 (2015): 219–28. 12. Richard Arneson, “Egalitarianism,” The Stanford Encyclopedia of Philosophy (Summer 2013 Edition). 13.  Govind Persad, Alan Wertheimer, and Ezekiel J. Emanuel, “Principles for Allocation of Scarce Medical Interventions,” The Lancet 373 (2009): 423–31; Maxwell Smith and Ross Upshur, “Pandemic Disease, Public Health, and Ethics,” in The Oxford Handbook of Public Health Ethics, eds. Anna C. Mastroianni, Jeffrey P. Kahn, and Nancy E. Kass (Oxford University Press, 2018), 9. 14.  First introduced by Derek Parfit, “Equality or Priority,” Ratio (new series) X 3 (December 1997): 34–60. 15. Michael Weber, “Prioritarianism,” Philosophy Compass 9, no. 11 (2014): 756–68. 16.  Broome, “Equality versus Priority.” 17.  Harry Frankfurt, “Equality as a Moral Ideal,” Ethics 98, no.1 (1987): 21–43,esp. 23. See also Liam Shields, “Sufficientarianism,” Philosophy Compass 15 (2020). 18.  Broome, “Equality versus Priority.” 19.  Persad et al., “Principles for Allocation of Scarce Medical Interventions”; A. Williams, “Inequalities in Health and

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Intergenerational Equity,” Ethical Theory and Moral Practice 2 (1999): 47–55. 20.  Others, for example, Ruth Macklin and Ethan Cowan, list this principle as a separate principle not related to prioritarianism, see: Ruth Macklin and Ethan Cowan, “Given Financial Constraints, It Would Be Unethical to Divert Antiretroviral Drugs from Treatment to Prevention,” Health Affairs 31, no. 7 (2012): 1537–44. 21.  John McKie and Jeff Richardson, “The Rule of Rescue,” Social Science & Medicine 56 (2003): 2407–19. See also R. Cookson, C. McCabe, and A. Tsuchiya, “Public Healthcare Resource Allocation and the Rule of Rescue,” Journal of Medical Ethics 34, no. 7 (July 2008): 540–44. 22.  Lasse Nielsen, “Pandemic Prioritarianism,” Journal of Medical Ethics 0 (2021):1–4. 23. Anne Lykkeskov and Ezio Di Nucci, “COVID-19 and Intergenerational Justice: The Case of Denmark,” in Philosophical Perspectives on the Social Consequences of the COVID-19 Pandemic, ed. Gotfried Schweiger (Springer, Forthcoming). 24.  Mark É. Czeisler et al., “Delay or Avoidance of Medical Care Because of COVID-19–Related Concerns—United States, June 2020,” Morbidity and Mortality Weekly Report 69 (U.S. Department of Health and Human Services/Centers for Disease Control and Prevention, September, 2020). 25.  Holt et al., “New-Onset Atrial Fibrillation, Incidence, Characteristics, and Related Events Following a National COVID-19 Lockdown of 5.6 Million People,” European Heart Journal 41 (2020): 3072–79. 26. C. Skovlund et al., “Hidden Morbidities: Drop in Cancer Diagnoses during the COVID-19 Pandemic in Denmark,” Acta Oncologica (November 2020). 27.  For example, Camille Maringe et al., “The Impact of the COVID-19 Pandemic on Cancer Deaths due to Delays in Diagnosis in England, UK: A National, Population-Based, Modelling Study,” Lancet Oncology 21 (2020): 1023–34. 28.  Sud et al., “Effect of Delays in the 2-Week-Wait Cancer Referral Pathway during the COVID-19 Pandemic on Cancer Survival in the UK: A Modelling Study,” Lancet Oncology 21 (August 2020): 1035–44. 29.  Andrew Byrne, Robert Barber, and Chee Hwai Lim, “Impact of the COVID-19 Pandemic—A Mental Health Service Perspective,” Progress in Neurology and Psychiatry 25 (2021). 30. Matthias Pierce et al., “Mental Health before and during the COVID-19 Pandemic: A Longitudinal Probability Sample Survey of the UK Population,” Lancet Psychiatry 7 (October 2020): 883–92. 31.  Ru Jia et al., “Mental Health in the UK during the COVID-19 Pandemic: Cross-Sectional Analyses from a Community Cohort Study,” BMJ Open 10 (2020):e040620, doi:10.1136/bmjopen-2020-040620. 32. M. Czeisler et al., “Mental Health, Substance Use, and Suicidal Ideation during the COVID-19 Pandemic— United States, June 24–30, 2020,” Morbidity and Mortality

Weekly Report 69, no. 32 (Centers for Disease Control and Prevention, 2020). 33.  Pinar Jenkins, Karol Sikora, and Paul Dolan, “LifeYears and Lockdowns: Estimating the Effects on Covid19 and Cancer Outcomes from the UK’s Response to the Pandemic,” European Journal of Clinical Oncology 3, no. 1 (2021): 1–3. 34. Ibid. 35.  Department of Health and Social Care, Office for National Statistics, Government Actuary’s Department and Home Office, Direct and Indirect Impacts of COVID-19 on Excess Deaths and Morbidity, 2020. 36.  Jenkins et al., “Life-Years and Lockdowns.” 37. Malahat Khalili et al., “Epidemiological Characteristics of COVID-19: A Systematic Review and Meta-analysis,” Epidemiology and Infection 148 (2020): 1–17. 38. Andrew T. Levin et al., “Assessing the Age Specificity of Infection Fatality Rates for COVID-19: Systematic Review, Meta-analysis, and Public Policy Implications,” European Journal of Epidemiology 35 (2020): 1123–38. 39.  OECD, “Education and COVID-19: Focusing on the Long-Term Impact of School Closures” (June 29, 2020). 40.  Jonas F. Ludvigsson et al., “Open Schools, Covid-19, and Child and Teacher Morbidity in Sweden,” The New England Journal of Medicine 384, no. 7 (February 18, 2021). 41.  Jonas F. Ludvigsson, “Children Are Unlikely to Be the Main Drivers of the COVID-19 Pandemic—A Systematic Review,” Acta Paediatrica 109, no. 8 (August 2020): 1525–30. 42.  Richard Armitage and Laura B. Nellums, “Considering Inequalities in the School Closure Response to COVID19,” The Lancet 8 (May 2020). 43. Nick Triggle, “Covid: The Devastating Toll of the Pandemic on Children,” BBC Health (January 30, 2021). 44.  T. V. Varga et al., “Loneliness, Worries, Anxiety, and Precautionary Behaviours in Response to the COVID-19 Pandemic: A Longitudinal Analysis of 200,000 Western and Northern Europeans,” The Lancet Regional Health— Europe 2 (2021). 45. O’Connor et al., “Mental Health and Well-Being during the COVID-19 Pandemic: Longitudinal Analyses of Adults in the UK COVID-19 Mental Health & Wellbeing Study,” The British Journal of Psychiatry (2020): 1–8. 46.  D. Goldstein, “As School Moves Online, Many Students Stay Logged Out,” The New York Times (April 6, 2020). 47. For example, V. Raghupathi, and W. Raghupathi, “The Influence of Education on Health: An Empirical Assessment of OECD Countries for the Period 1995–2015,” Archives of Public Health 78, no. 20 (2020). A. Zajacova and E. M. Lawrence, “The Relationship between Education and Health: Reducing Disparities through a Contextual Approach,” Annual Review of Public Health 39 (2018): 273–89. 48. Julian Savulescu and James Cameron, “Why Lockdown of the Elderly Is Not Ageist and Why Levelling Down Equality Is Wrong,” Journal of Medical Ethics 46 (2020): 717–21. Pandemic E thics 

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49. Ben Bramble, Pandemic Ethics—8 Big Questions of COVID-19 (Bartleby Books, 2020). 50.  Monita Karmakar, Paula M. Lantz, and Renuka Tipirneni, “Association of Social and Demographic Factors with COVID-19 Incidence and Death Rates in the US,” JAMA Open Network, January 29, 2021; R. B. Hawkins, E. J. Charles, and J. H. Mehaffey, “Socio-economic Status and COVID-19-Related Cases and Fatalities,” Public Health 189 (2020): 129–34; Ya-dong Gao et al., “Risk Factors for Severe and Critically Ill COVID-19 Patients: A Review,” Allergy 76 (2021): 428–55. 51.  European Parliament, 2020. 52.  Katarzyna Burzynska and Gabriela Contreras, “Gendered Effects of School Closures during the COVID-19 Pandemic,” The Lancet 395 (June 27, 2020). 53.  United Nations, Policy Brief: The Impact of COVID-19 on Women (April 9, 2020). 54.  European Parliament, 2020. 55. Udo Schuklenk, “The Ethical Challenges of the SARS-CoV-2 Pandemic in the Global South and the Global North—Same and Different,” Developing World Bioethics 20 (2020): 62–64. 56. Kelsey Piper, “The Devastating Consequences of Coronavirus Lockdowns in Poor Countries,” Future Perfect, April 18, 2020, https://www.vox.com/future-perfect

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/2020/4/18/21212688/coronavirus-lockdowns-develop ing-world. 57. WHO, Global Tuberculosis Report 2020 (Geneva: World Health Organization, 2020). 58.  The Global Fund, Results Report 2021, https://www .theglobalfund.org/en/results/. 59.  Leslie Roberts, “How COVID Hurt the Fight against Other Dangerous Diseases,” Nature 592 (April 22, 2021). 60. Ibid. 61.  See, for example, Wolfie Christl, Corporate Surveillance in Everyday Life—How Companies Collect, Combine, Analyze, Trade, and Use Personal Data on Billions (Cracked Labs, Vienna, June 2017). 62. Luca Belli, Molly Schwartz, and Luiza Louzada, “Selling Your Soul while Negotiating the Conditions: From Notice and Consent to Data Control by Design,” Health Technology (March 18, 2017). 63.  Sera Whitelaw et al., “Applications of Digital Technology in COVID-19 Pandemic Planning and Response,” The Lancet Digital Health 2 (August 2020). 64.  Carrie DeCell, “Can Governments Track the Pandemic and Still Protect Privacy?,” Just Security (April 6, 2020), https://www.justsecurity.org/69549/can-governments-track-the-pandemic-and-still-protect-privacy/. 65.  Jessica Morley et al., “Ethical Guidelines for COVID19 Tracing Apps,” Nature 582 (June 4, 2020).

CHAPTER 22

Vaccination Ethics Stephen John

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accinations are one of the most important and effective contributions of modern medical science. Vaccination programs have eradicated smallpox, tamed polio and, as I write, provide the best chance of ending the Covid-19 pandemic. However, there is widespread vaccine hesitancy. Some writers suggest that vaccine refusal is ethically impermissible, akin to shooting a gun into a crowd, but others argue concerns can be reasonable. Quite apart from hesitancy, vaccination policies raise other hard questions: Should we vaccinate children against chickenpox if this increases the risk of shingles for the elderly? In distributing Covid-19 vaccines, should we focus on protecting the vulnerable or re-opening the economy? Is it ethical to test vaccines by exposing healthy volunteers to pathogens? Many issues in vaccination ethics arise in other areas of public health ethics: debates over distributing vaccines resemble debates over distributing scarce ventilators; decisions not to vaccinate resemble decisions not to attend screening. However, vaccination policies typically raise additional problems because an individual’s vaccination status affects others. If you and I need the same ventilator but it goes to you, then I gain nothing; if you and I want the same dose of vaccine and you get it, this also protects me a little. Conversely, you refusing cancer screening doesn’t affect my health, but you refusing a vaccine does. In vaccination ethics, we must decide how to balance

individuals’ interests and rights with the interests and rights of the rest of the population. In this chapter, I discuss key issues about testing, distributing, and refusing vaccines. However, vaccination programs differ in ethically salient ways: a measles vaccination program benefits each vaccinated individual, but HPV vaccination programs benefit women more than men; MMR vaccine hesitancy raises questions about parental autonomy, whereas much Covid-19 vaccine hesitancy doesn’t. The conclusion asks, then, whether there can be a general approach to vaccination ethics.

S H O U L D WE O FFE R AT A L L? For vaccines to be available at all they must pass stringent trials aimed at meeting regulators’ demands for efficacy and safety. Therefore, familiar ethical and epistemological questions about medical trials in general—for example, what counts as valid “informed consent” to participation or whether randomization is necessary and sufficient to avoid confounding— apply to vaccination trials.1 However, vaccinations raise distinctive challenges around “challenge trials,” where vaccine efficacy is assessed by deliberately exposing vaccinated subjects to a virus.2 Broadly, there are two classes of challenge trials: where we have some “gold standard” treatment for 241

the condition, and where we do not. Research ethics guidelines typically rule out trials in the second scenario. (For reasons of space, I’ll use “challenge trials” to refer to these cases.) This apparent tension between what is epistemically best and what is ethically permissible is exacerbated by the fact that very many healthy people are willing to participate in challenge trials. For example, in the United Kingdom, over 38,000 healthy people volunteered to take part in Covid-19 challenge trials.3 Recently, then, several writers, most prominently Arthur Caplan and Nir Eyal, have proposed that vaccination challenge trials should be permitted.4 These proposals seem supported by considerations of both social utility and respect for autonomy. However, many writers, researchers, and policy-makers remain implacably opposed to challenge trials, even in “emergency” pandemic contexts.5 To understand these worries, we need to step back from guidelines to think through two underlying ethical worries. The first starts from the assumption that a necessary condition for ethical medical research is that participants give their informed consent. It is then claimed that, despite apparent public willingness, it is unlikely—or, even, impossible—for the consent to challenge trials to be genuinely “well informed” or “autonomous.”6 The second argument rests on a different ethical assumption that physicians are bound by duties of “non-maleficence” (more colloquially, “do no harm”), and claims that challenge trials violate this duty.7 The first concern is that, despite appearances, volunteers don’t or can’t really agree to invitations to challenge trials; the second is that, even if volunteers do really give consent, the invitation shouldn’t be made anyway. The first line-of-attack is puzzling: it requires a very high bar for establishing autonomy and risks assuming that altruistic motivation is impossible or irrational. The second goes to a central issue in medical ethics. The core problem runs as follows: plausibly, non-maleficence doesn’t just rule out actions that are bound to cause harm but actions where the risks of harm are higher than the chance of benefit.8 If so, non-maleficence cautions against challenge trials. However, non-maleficence is not the only important 242 

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ethical principle: we should also respect individuals’ autonomy and promote health-related well-being. Challenge trials, then, pose two questions: the relationship between non-maleficence and risk, and how to balance non-maleficence with other ethical principles. As I will now show, similar tensions arise when we move from testing to using vaccines.

H OW S H O U L D WE DI S T R I B U T E VACC I N E S? It isn’t true that everyone who might benefit from a vaccine should be offered a vaccine. First, even if a vaccine confers some expected benefit, it might also be associated with side effects, such that, overall, receiving the vaccine is against individuals’ interests. For example, the UK’s Joint Committee on Vaccination and Immunisation (JCVI) advised against Covid-19 vaccination for teenagers because they were concerned that the risks of side effects outweighed the expected health benefits.9 Second, even when vaccination is in the interests of each member of a population, there might not be enough doses to vaccinate all in the population, so we need to decide whom to prioritize. For example, every year the JCVI must make decisions about who should receive flu vaccines.10 Again, these questions are not unique to vaccination. Just as vaccination can do “more harm than good” for some, breast cancer screening is not offered to younger women because the risks of “overtreatment” outweigh the benefits. Just as we must decide how to distribute vaccines, so, too, we must often decide which drugs to buy given the resource constraints. In this section, I will discuss the second set of questions about distributing vaccines, before noting how the first set of concerns complicates the debate. In the distributive justice literature, at least three principles have been proposed to guide the distribution of scarce medical resources: 1. Efficiency: Allocate goods in the way that does as much aggregate good as possible 2. Equality: Allocate goods in ways that ensure equal treatment or outcome

3. Priority: Allocate goods in ways that help those who are worst off For example, in distributing scarce ventilators, Efficiency might imply we give ventilators to those most likely to recover, Equality might suggest we give each an equal chance of a ventilator, whereas Priority might imply that ventilators should be given to those most likely to die without intervention.11 Applying these principles to vaccines is complicated by recent work distinguishing the ex ante and ex post perspectives.12 To explain, an ex ante perspective applies principles based on individuals’ chances of being harmed or benefitted (their “prospects”), whereas an ex post perspective applies principles based on their expected overall consequences. Consider, for example, Equality: giving everyone an equal chance of benefit (ex ante)—as in Martin Peterson’s proposal, we distribute flu vaccines by lottery13— might foreseeably lead to unequal outcomes (ex post); while a concern for unequal outcomes—as in Harald Schmidt’s recommendations for vaccine distribution centered around social justice concerns14—might require people’s different prospects. Unlike treatments that return an ill individual to health, vaccines essentially reduce risk. Therefore, it is particularly important to consider both ex ante and ex post perspectives in our context. We can, then, distinguish five principles for distributing scarce vaccines: Efficiency: Distribute vaccines to do as much health-related good as possible Ex ante equality: Distribute vaccines such that each has an equal chance of a vaccine-related good Ex post equality: Distribute vaccines to reduce disease-related outcome inequalities Ex ante priority: Distribute vaccines to help those at the highest risk of disease Ex post priority: Distribute vaccines so as to minimize the worst outcomes (e.g., death) These distinctions may seem nit-picking.15 However, they provide us with tools for understanding some key tensions in vaccine ethics. Consider three examples from the recent Covid-19 pandemic.

First, consider the Greek government’s policy of targeting vaccinations in popular tourist areas.16 This policy might not have been the best way of securing the greatest mortality reduction, violating ex post Priority; furthermore, it created inequalities in people’s chances of being vaccinated, violating ex ante Equality. However, given the importance of tourism to the Greek economy, there are obvious Efficiency reasons in favor: the policy may have done more good overall for the Greek people—improving average well-being—even as it violated other principles. Second, during the Covid-19 pandemic, there were concerns in the UK that vaccination clinics used “spare” doses to immunize younger patients, before they had vaccinated all people in higher priority, older cohorts.17 Given differences in vaccine uptake between different racial groups, allowing queue-jumping seemed likely to exacerbate racial inequalities in vaccination rates. So, while efficiency speaks in favor of queue-jumping, ex post equality speaks against it. Interestingly, this is true even if the policies could be defended as meeting ex ante equality, because members of different groups had equal (formal) opportunity to get vaccinated. Third, consider the policy of vaccinating the “most at risk” first, as was employed in the United Kingdom and the United States for Covid-19. This ex ante priority focus might seem a sensible way of saving as many lives as possible, and hence, in line with ex post priority (and, maybe, efficiency, depending on how we interpret “benefits”). However, as Rosamund Rhodes has argued, given differential transmission rates, the best overall outcomes might, in fact, have to be secured by vaccinating the younger members of the population, at relatively lower risk.18 Indeed, there are long-standing arguments that giving flu vaccines to younger people, rather than “high-risk” groups, might do more to reduce overall mortality, given young people are more likely to transmit viral infections. If so, in at least some vaccine cases, there is a prima facie tension between helping the most vulnerable, as ex ante Priority demands, and doing as much good as possible, from the ex post perspective. All three of these problems resemble familiar debates in medical ethics. However, the fact that V accination E thics 

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vaccines affect transmission—as Rhodes’ argument notes—generates a particularly complex further issue. Consider, again, the JCVI’s decision not to recommend routine Covid-19 vaccination for teenagers, because the expected health “benefits” were outweighed by the risks. In response, commentators argued that vaccinating teenagers was still a good idea, because doing so would curb transmission, generating significant population benefit.19 Of course, these debates were shrouded in significant epidemiological uncertainty. (Indeed, strictly, the JCVI’s recommendation was that, given the uncertainty involved, it was reasonable to take a precautionary approach and act as if the risks outweighed the benefits.)20 However, the key ethical issue here is simple: Can it be permissible to adopt vaccination policies that worsen the prospects of some for the sake of benefitting others, or is this to treat people as mere means to an end?21 Three features of this problem are worth noting. First, it doesn’t necessarily arise for other medical interventions. For example, screening women for breast cancer when doing so doesn’t improve their prospects seems pointless, because screening status has no (health-related) effects on anyone else.22 Second, the problem relates to Rhodes’ arguments, but at a more fundamental level; the question isn’t just about helping those who seem to benefit less ex ante, for the sake of a population gain, but actually making the young people worse off to “help” the old.23 Third, you might think that, as long as teenagers consent to vaccination, these concerns are irrelevant. This response brings up questions about the quality of consent that can be given to vaccination.24 At a deeper level, however, it returns us to our discussion of challenge trials. Offering teenagers vaccines resembles recruitment in challenge trials, as it risks more harm than benefit. So, we can understand the JCVI’s reticence as mirroring one of the arguments against challenge trials: even if teenagers would happily get vaccinated, we might have reasons of non-maleficence not to offer vaccines in the first place. Assessing the ethics of vaccine distribution requires, then, that we think not only about distributive justice but about how to specify and weigh 244 

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respect for autonomy, beneficence, and non-maleficence, and how these latter debates translate from clinical or research contexts to social decision-making, and how distribution relates to the ethics of trials. If that were not complicated enough, there is another twist! Consider a teenager who, convinced by the JCVI’s reticence, refuses an offered vaccination. In not vaccinating, she is avoidably risking harm to others. In general, we have an obligation to reduce the risks we pose to others, even when doing so would incur some cost. For example, I am obliged to fix a leak in my guttering, which makes my neighbor’s path slippery, even if the leak doesn’t affect my safety. Rather than think that we have reasons of non-maleficence not to vaccinate the teenagers, you might think that teenagers have their own obligations to take the vaccine!25 The next section turns to related topics.

H OW S H O U L D WE T H I N K A B O U T R E FU S A L? Since the late 1990s, there have been concerns that the childhood triple vaccine for Measles, Mumps, and Rubella (MMR) is associated with autism (strictly, “autistic enterocolitis”). The scientific consensus is firmly against this hypothesis. However, many parents refuse to vaccinate their children.26 In response, various governments have introduced, or considered introducing, (quasi-) mandatory vaccination. The MMR case is complex because it raises three issues: first, whether vaccination should be mandatory; second, vaccine hesitancy; third, the limits of parental authority. This section discusses these issues and their inter-relationships. First, assume that adults are choosing whether to get vaccinated themselves. In bioethics, there is a strong presumption that we should respect patients’ well-informed decisions about medical interventions, rather than making them mandatory. (You might question whether vaccination choices are “well informed.” I return to that issue shortly.) However, even assuming choices are well informed, there are arguments for overriding autonomy in vaccination contexts. I consider two: the “non-maleficence”

argument and the “fairness” argument. (Note that both the “non-maleficence” and “fairness” arguments imply that mandatory vaccination would be permissible; of course, there might be reasons to prefer less-intrusive policies—such as education or use of incentives—if they achieve the end of mass vaccination less controversially.)27 The first argument was already sketched in the previous section: we each have an obligation not to knowingly and avoidably cause or risk causing harm to non-consenting third parties; such duties can be legally enforced; in choosing not to vaccinate, we knowingly and avoidably risk harming others; therefore, we each have a legally enforceable obligation to get vaccinated. In an influential article developing this argument, Jessica Flanigan memorably suggests that not vaccinating against measles is akin to firing a loaded gun into a crowd.28 Although striking, there are various worries about the non-maleficence argument. First, it apparently blurs the distinction between doing and allowing harm, insofar as not vaccinating is an “omission,” rather than an action. Second, and more importantly, it is unclear how to spell out the relationship between risking harm and harming.29 Deliberately driving your car into an innocent bystander violates your moral duties not to cause harm. However, it is not obvious that every time you drive a car, imposing a very small increased risk on others, you violate the same duty. Similarly, while it would be wrong deliberately to infect someone else with a virus, it isn’t obvious that ever so slightly raising their risk by not vaccinating violates the same duty. None of this is to deny that the non-maleficence argument points to important considerations—it seems wrong to fire a loaded gun above a crowd, even if your bullet isn’t guaranteed to hit anyone—but the ethics of risk imposition is a complex area. A second argument for mandatory vaccination appeals to the concept of free-riding. Consider a simple example: you know that, because everyone else uses electric cars, you continuing to use a diesel car won’t further improve air quality; therefore, you keep on using your cheaper-to-fill diesel car. You haven’t harmed anyone—everyone else still enjoys clean

air—but, it seems, you have acted unfairly, by enjoying a benefit—clean air—which exists only because everyone else bears a cost—buying a new car—without yourself paying that cost. Free riding is particularly easy in cases involving “public goods,” that is, goods, such as clean air, which are non-excludable and non-rival (it is hard to stop anyone enjoying clean air, and my enjoyment of clean air doesn’t take clean air from you).30 Mass vaccination produces a public good of “herd immunity”: when enough other people are vaccinated, I enjoy protection from infection regardless of whether I am vaccinated. As such, it may be prudentially rational for me not to vaccinate—after all, even the safest vaccines have minor side effects. Still, such a failure seems to involve “free riding.” If it is permissible for the State to enforce fairness-based obligations, then it is permissible to force people to bear their fair share of the costs of maintaining herd immunity.31 However, using the “free riding” argument to ground an enforceable obligation to vaccinate is controversial. One concern is that the argument seems to generate only an obligation to get vaccinated once herd immunity has been achieved; it’s not clear that it can generate an argument to get vaccinated in the first place.32 Second, most people who refuse to vaccinate do not intend to free ride on the actions of others. Rather, they have ethical concerns about vaccination, or believe that vaccination is dangerous or ineffective. As such, it is not clear that their actions count as intentional free riding.33 These comments lead to our second question: Why are people vaccine hesitant? It is useful to distinguish two forms of vaccine hesitancy: “ethical hesitancy,” based on religious or ethical beliefs, and “epistemic hesitancy,” based on beliefs about vaccine safety or efficacy. Prima facie, epistemic hesitancy is, ethically speaking, more straightforward than ethical hesitancy. The latter raises difficult questions about the limits of religious or ethical tolerance, and notions of “conscientious objection.”34 By contrast, epistemic hesitancy is often understood as stemming from misinformation—for example, reliance on biased media—or basic errors of reasoning. On these accounts, epistemic hesitancy is simply not well V accination E thics 

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informed. Potentially, this claim has a radical implication: we can just override vaccine choices without violating autonomy. However, these models also have a more moderate implication: that hesitancy can easily be overcome through better communication and education. Perhaps unsurprisingly, then, discussions of vaccine hesitancy have tended to focus on the (apparently) “easier” case of epistemic hesitancy.35 However, there are at least three concerns with this approach. First, it seems that ethical hesitancy— for example, concerning whether the composition of vaccines is kosher or halal—is often misdescribed as epistemic hesitancy, occluding genuine ethical concerns.36 Second, the distinction between “ethical” and “epistemic” hesitancy is very hard to draw. (Consider the notion that “nature is benign”—is that an ethical or factual claim?)37 Third, even when we focus on epistemic questions, it is unclear that vaccine hesitancy is necessarily the result of ignorance or bad reasoning. For example, Maya Goldenberg has shown how many parents’ concerns about the MMR vaccine involve complex issues about the problems of inferring from population-level to individual-level data;38 similarly, I have argued that much hesitancy can be framed in terms of concerns about how epidemiologists handle inferential “inductive risks.”39 All three worries imply that hesitancy can serve as a form of “informed dissent,” pointing to larger problems with scientific and health care institutions.40 Treating vaccine hesitancy as if it were necessarily ill-informed is tempting—insofar as it simplifies the ethical landscape—but dangerous. Still, even if hesitancy is sometimes more reasonable than it first appears, most writers still think that, ultimately, the vaccine-hesitant people are wrong about whether vaccines are effective and safe. These false beliefs raise particularly complex problems in the context of vaccinating young children. In general, parents have significant and wide-ranging discretion to make choices about their children, including choices that affect their health.41 For example, even if my son would be healthier were I to take him to swimming class rather than the cinema, few people think that the State should force me to take him to swimming. However, parental discretion is not absolute; 246 

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for example, the State can prevent me from practicing my surgical skills on my children. Choices not to vaccinate sit in the middle of these two extremes: the risks involved in foregoing vaccination are lower than the risks of amateur surgery but higher than those of choosing the cinema over swimming. In thinking about parental choices about vaccination, we need to assess the limits of parental authority. Broadly, we can distinguish two models for thinking about parental authority: a basic rights model and a best interests model. On the first model, much as you might think that I have a right to decide what happens to vegetables in my garden simply because I have grown them, parents have a right to control what happens to their children simply because they are their children. On the second model, rather than treat parental rights as a moral “given,” they are justified on (broadly) consequentialist grounds: given that parents typically know their children best, care for them, and have intertwined interests, granting parents considerable discretion promotes children’s best interests. It is likely to be much harder to justify mandatory childhood vaccination on the “basic rights” than the “best interests” understanding. If parental rights are simply tools for promoting child welfare, then there are good reasons for overriding those rights when parents’ choices clearly threaten significant harm to children. (This is not to say it will be easy to mandate vaccination on the “best interests” view—the notion of “best interests” itself is complex, and there may be good reasons to maintain a strong default presumption of parental rights—but that it is easier.) As such opponents of mandatory vaccination are probably best understood as holding the “basic rights” approach. A short overview is not the place to decide between these different models (or their possible variants).42 However, it is worth noting that the basic rights approach seems likely to be harder to justify; treating children as akin to a form of property overlooks the fact that, unlike “my” vegetables, they are separate human beings with their own moral worth. (And this is before we get to the question of precisely which sorts of parent–child relation might ground rights.) Therefore, while there is much indignation

about the State “interfering” in parental rights, it is unclear that such indignation rests on sound bases. Modern, liberal societies allow people with conflicting ethical and epistemic commitments to live together. Vaccine hesitancy, however, points to the limits of toleration: in this case, individuals’ epistemic, ethical, or religious commitments risk others. Your insistence that the Earth is flat is wrong but doesn’t harm me, whereas your view that vaccines are unsafe might threaten your children, me, or my children. It would, then, be nice to think that vaccine hesitancy is always simply mistaken. However, when we dig into the commitments underlying hesitancy, it doesn’t always stem from simple ignorance or stupidity. Rather, the key problem with hesitancy is that it forces us to confront a series of distinctively political questions about the limits to both epistemic and ethical autonomy.

CO NCLUSION Vaccination programs differ from one another in ethically salient ways. For example, most influenza vaccines stop patients from developing symptoms and, hence, also stop transmission. By contrast, given that, unlike influenza, the Covid-19 virus can be transmitted by asymptomatic patients, Covid-19 vaccines may do far less to stop transmission. Therefore, even if not getting vaccinated against flu is like shooting a gun into a crowd, not getting the Covid19 vaccine may not be. Given what we know about measles, plausibly, all (non-immunocompromised) infants benefit equally from an MMR jab. By contrast, female teenagers benefit far more than male teenagers from taking the HPV vaccine; the reason to vaccinate teenage boys is primarily to protect girls. Therefore, HPV vaccine hesitancy among teenage boys is, epistemically speaking, very different from MMR hesitancy. It is easy to think that claims about specific vaccination policies imply something about all vaccination policies. This phenomenon is, perhaps, most pronounced in discussions of “vaccine hesitancy,” where

there is a tendency to write as if all cases of hesitancy involve a similar set of epistemic failings (or virtues) without paying attention to the differences between vaccines. This is a mistake: when thinking about vaccination policies, we should not assume that one size fits all. Precisely for that reason, this chapter does not include a checklist or guidelines for thinking about vaccination. Still, there are themes that run across vaccination policies: the ethical salience of imposing risks of harm on others, and the proper balance between individuals’ choices and others’ health. The often-noted relationship between political views and vaccine hesitancy should not surprise us: in the case of vaccination, the personal is always political.

N OT E S 1.  See J. McMillan, “Public Health Research Ethics,” in Public Health Ethics: Key Concepts and Issues in Policy and Practice, ed. Angus Dawson (Cambridge, MA: Cambridge University Press, 2011), 174–90. 2.  Euzebiusz Jamrozik and Michael J. Selgelid, “COVID19 Human Challenge Studies: Ethical Issues,” The Lancet Infectious Diseases 20, no. 8 (2020): e198–e203. 3.  Seán O’Neill McPartlin et al., “Covid-19 Vaccines: Should We Allow Human Challenge Studies to Infect Healthy Volunteers with SARS-CoV-2?,” British Medical Journal (Clinical Research Edition) 371 (November 9, 2020): m4258, doi:10.1136/bmj.m4258. 4.  N. Eyal, “Why Challenge Trials of SARS-CoV-2 Vaccines Could Be Ethical despite Risk of Severe Adverse Events,” Ethics & Human Research 42, no.4 (2020): 24–34. 5.  See, for example, Weijer’s contribution to McPartlin et al.: “Covid-19 Vaccines.” 6. A. Keren and O. Lev, “Uncertainty, Error and Informed Consent to Challenge Trials of COVID-19 Vaccines: Response to Steel et al.,” Journal of Medical Ethics 46 (2020): 813–14. 7.  See Weijer’s contribution to McPartlin et al.: “Covid19 Vaccines.” 8.  S. John and J. Wu, “First Do No Harm?,” Social Theory and Practice, forthcoming. 9. “JCVI Statement on COVID-19 Vaccination of Children Aged 12 to 15 Years,” September 3, 2021,” UK Department of Health & Social Care, accessed February 17, 2022, https://www.gov.uk/government/publications/jcvi-state ment-september-2021-covid-19-vaccination-of-children -aged-12-to-15-years/jcvi-statement-on-covid-19-vaccina tion-of-children-aged-12-to-15-years-3-september-2021.

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10. “Joint Committee on Vaccination and Immunisation: Advice on Priority Groups for COVID-19 Vaccination,” December 30, 2020, UK Department of Health & Social Care, accessed February 17, 2022, https://www. gov.uk/government/publications/priority-groups-for -coronavirus-covid-19-vaccination-advice-from-the-jcvi-30 -december-2020/joint-committee-on-vaccination-and-im munisation-advice-on-priority-groups-for-covid-19-vacci nation-30-december-2020. 11.  For much more on resource allocation, see Greg Bognar and Iwao Hirose, The Ethics of Health Care Rationing: An Introduction (Routledge, 2014). 12.  Johann Frick, “Contractualism and Social Risk,” Philosophy & Public Affairs 43, no. 3 (2015): 175–223; S. D. John, “Risk, Contractualism, and Rose’s “Prevention Paradox,” Social Theory and Practice (2014): 28–50. 13.  Martin Peterson, “The Moral Importance of Selecting People Randomly,” Bioethics 22, no. 6 (July 2008): 321–27. 14.  H. Schmidt, “Vaccine Rationing and the Urgency of Social Justice in the Covid-19 Response,” Hastings Center Report, 50, no. 3 (2020): 46–49. 15.  Note five principles, rather than six, because it is unclear that there can be an ex ante version of Efficiency. 16. H. Smith, “Aegean Islands Aim to Become First Fully Vaccinated Areas of Greece,” The Guardian, April 6, 2021, https://www.theguardian.com/world/2021/apr/06 /aegean-islands-to-become-first-covid-free-areas-of-greece. 17.  Joshua Nevett, “Covid-19 Vaccines: Is It OK to Get a Leftover jab?,” BBC News, January 28, 2021, https://www .bbc.co.uk/news/world-55841017. 18. Rosamond Rhodes, “Justice in COVID-19 Vaccine Prioritisation: Rethinking the Approach,” Journal of Medical Ethics 47 no. 9 (2021): 623–31, doi:10.1136/medethics -2020-107117; Alison Galvani, Timothy Reluga, and Gretchen Chapman, “Long-Standing Influenza Vaccination Policy Is in Accord with Individual Self-Interest But Not with the Utilitarian Optimum,” Proceedings of the National Academy of Sciences 104, no. 13 (March 27, 2007): 5692–97. 19.  Nicola Davis, “UK Vaccine Advisers ‘Acted Like Medical Regulators’ over Covid Jabs for Children,” The Guardian, September 6, 2021, https://www.theguardian.com /world/2021/sep/06/uk-vaccine-advisers-acted-like-med ical-regulators-covid-jabs-children-neil-ferguson. 20.  For the relationship between uncertainty and precaution in regulatory contexts, see D. Steel, Philosophy and the Precautionary Principle (Cambridge University Press, 2015). 21.  H. Malm and M. C. Navin, “Pox Parties for Grannies? Chickenpox, Exogenous Boosting, and Harmful Injustices,” The American Journal of Bioethics 20, no. 9 (2020): 45–57. 22.  John and Wu, “First, Do No Harm.” 23.  Malm and Navin, “Pox-Parties for Grannies.” 24.  J. A. Singh et al., “Acquiescence and Submission to COVID-19 Vaccination: Ethics Considerations.” Wellcome Open Research 6, no. 91 (2021): 91.

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25.  A. Giubilini, T. Douglas, and J. Savulescu, “The Moral Obligation to be Vaccinated: Utilitarianism, Contractualism, and Collective Easy Rescue.” Medicine, Health Care and Philosophy 21, no. 4 (2018): 547–60. 26.  M. J. Goldenberg, “Public Misunderstanding of Science? Reframing the Problem of Vaccine Hesitancy,” Perspectives on Science 24, no. 5 (2016): 552–81. 27. For discussion, see Mark Christopher Navin and Mark Aaron Largent, “Improving Nonmedical Vaccine Exemption Policies: Three Case Studies,” Public Health Ethics 10, no. 3 (November 2017): 225–34, https://doi.org/10 .1093/phe/phw047. 28.  Jessica Flanigan, “A Defense of Compulsory Vaccination,” HEC Forum 26, no. 1 (2014): 5–25. 29. Jason Brennan, “A Libertarian Case for Mandatory Vaccination,” Journal of Medical Ethics 44, no. 1 (2018): 37–43, doi:10.1136/medethics-2016-103486. 30.  J. Anomaly, “Public Health and Public Goods,” Public Health Ethics 4, no. 3 (2011): 251–59. 31.  M. van den Hoven, “Why One Should Do One’s Bit: Thinking about Free Riding in the Context of Public Health Ethics,” Public Health Ethics 5, no. 2 (2012): 154–60; A. Dawson, “Herd Protection as a Public Good: Vaccination and Our Obligations to Others,” Ethics, Prevention, and Public Health 160 (2007): 163. 32.  Dawson, “Herd Protection.” 33.  Ethan Bradley and Mark Navin, “Vaccine Refusal Is Not Free Riding,” Erasmus Journal for Philosophy and Economics 14, no. 1 (2021):167–81, https://doi.org/10.23941 /ejpe.v14i1.555. 34.  S. Clarke, A. Giubilini, and M. J. Walker, “Conscientious Objection to Vaccination,” Bioethics 31 (2017): 155–61. 35.  Tom Sorell, “Parental Choice and Expert Knowledge in the Debate about MMR and Autism,” in Ethics, Prevention and Public Health, eds. Angus Dawson and Marcel Verweij (Oxford: Oxford University Press, 2007), 96–110. 36.  M. J. Goldenberg, Vaccine Hesitancy: Public Trust, Expertise, and the War on Science (University of Pittsburgh Press, 2021). 37.  M. Navin, Values and Vaccine Refusal: Hard Questions in Ethics, Epistemology, and Health Care (Routledge, 2015). 38.  M. J. Goldenberg, Vaccine Hesitancy. 39. S. John, “Expert Testimony and Epistemological Free-Riding: The MMR Controversy,” The Philosophical Quarterly 61, no. 244 (2011): 496–517. 40. K. Furman, “On Trusting Neighbors More than Experts: An Ebola Case Study,” Frontiers in Communication 5, no. 23 (2020): 1–8. 41. D. Archard, Children: Rights and Childhood (Routledge, 2014). 42.  Roland Pierik, “Mandatory Vaccination: An Unqualified Defence,” Journal of Applied Philosophy 35, no. 2 (May 2018): 381–98.

SEC TION VII

REPRODUCTION

CHAPTER 23

The Ethics of Parenthood Teresa Baron

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arenthood is one of the fundamentals of everyday life. Our parents play a significant role in shaping our life story, and for most of us, the ambition to become a parent one day is similarly important. Philosophy of parenthood therefore requires us to critically examine ideas we use on a regular basis and often take for granted, including the concept of parenthood itself. This concept, seemingly straightforward, becomes incredibly complex when we place it under the microscope. When we talk about parenthood, we may mean biological parenthood, social parenthood, legal parenthood, or even moral parenthood. When we talk about parental rights, we may mean the legal rights defined as belonging to those recognized as parents by the state, or we may want to pick out the moral rights accruing to biological parents. A common thread running through the ethics of parenthood is the search for a unifying framework, accounting for all these interrelated elements and allowing us to explain what parenthood entails in any given situation. However, as this chapter aims to demonstrate, finding such a unifying framework is no simple matter. Much of the work in this field revolves around problem cases: scenarios, whether actual or hypothetical, that threaten our ordinary views of parenthood and the parent–child relationship. These problem cases have appeared more and more frequently as reproductive technologies and legal family-making 250

structures have multiplied. The questions they raise force us to reconsider the older understandings of who has the right to a child, who has the obligation to raise that child, and how competing claims should be settled. One such case is that of a New York couple who sued their fertility clinic after embryos belonging to a different couple were accidentally implanted and gestated by the female plaintiff. After she gave birth to twins, she and her partner were compelled to relinquish custody to the genetic parents.1 Here, both parties have biological ties to the children—did either have a stronger moral claim to them? Another problem case arose in the legal battle between two sets of would-be adoptive parents, both of whom paid an online adoption service significant sums for twin girls born in St. Louis, Missouri.2 This case raised questions not only about which couple had a stronger parental claim but about the ethics of paying for children. Where do we draw the line between paid adoption and child trafficking? A different kind of legal battle, in the prosecution of pregnant women for fetal endangerment, raises questions about parental obligations: as medical technologies advance and allow us to monitor fetal development ever more closely during pregnancy, where do we draw the limits of maternal responsibility? Parenthood dilemmas often appear when multiple people claim rights to the same child, but also when the reverse happens, and nobody wants to take

responsibility for parenting a child—for example, when prospective parents change their minds about surrogacy and refuse to collect the children they have commissioned.3 However, novel ways of acquiring children have also attracted the attention of ethicists. Technologies such as ectogenesis and the derivation of gametes from stem cells are no longer simply the stuff of sci-fi, but are hovering on the horizon close enough to demand ethical analysis. In this chapter, I discuss parental rights and obligations, and the ethics of procreation under different circumstances, both real and (for now) hypothetical.

W HAT DO WE OW E O U R CH I L D R EN? Most discussion of parental obligation takes as its starting point the needs of children. As Bernard Prusak puts it, “They need, among other things, food, clothing, shelter, medical care, and education. To be reconciled to existence, they need, in brief, love, as well as community, culture, and perhaps some form of spirituality.”4 However, some scholars have raised the possibility that parental obligations extend beyond the fulfillment of these needs. Are we obliged to make sure we have the best possible children, for example, by using preimplantation genetic diagnosis to choose only the healthiest embryos?5 Do we have a duty to give them the best possible upbringing, even if that means giving them up to be raised by more qualified candidates?6 In considering what we may owe our children, some philosophers appeal to children’s “right to an open future,” an idea introduced originally by Joel Feinberg. He argues that children have the right to be raised and educated in such a way that their future options will remain open, so that they can exercise their autonomy as adults; children’s rights to a certain kind of upbringing are therefore derived from the rights of their adult selves.7 While the idea of an open future seems relatively straightforward, it raises questions about the kinds of capabilities that a child should be encouraged to develop and the point at which we should trade an open field of options for the loss of specialized talent. Should a violin

virtuoso be encouraged to put down his instrument and engage in a balanced education, and should a gifted athlete be brought in from the rugby field and told to pay attention to math, geography, and computer code? Critics have also observed that positive provision for a maximally open future would require vast resources. If parents were obliged to provide this, “they would then lack any discretion about how they spent their time and money.”8 If we accept that children have a right to an “open future,” it is more plausibly understood as a negative right: parents are obliged to raise children in a way that does not hinder their exercise of autonomy as adults. Is well-rounded (if not maximally option-preserving) parenting a sufficient standard to which to hold parents? The principle of procreative beneficence, as defended by Julian Savulescu, suggests that it is not enough. Before we even begin the task of parenting, we must also seek to produce the best possible children. He argues that those to whom embryo selection and screening technology are available have a moral obligation to select the embryo expected to have the best possible life, based on the genetic information we now have.9 If this is a parental obligation, it cannot be an obligation to the child (who, after all, will not exist to have rights and interests until after she has been conceived). Savulescu is not alone, however, in arguing that prospective parents have moral duties to procreate with an eye to the likelihood that a child conceived under certain circumstances—for example, while on a course of medication that may affect fetal development—will have better or worse outcomes than a child conceived under other circumstances.10 What about obligations to the child once conceived? Dominant cultural tropes—such as stereotypes of motherhood as fundamentally self-sacrificial—regularly culminate in pressure on pregnant women to modify their lifestyles and accept various kinds of medical intervention for the sake of the developing the fetus.11 As well as behavior-policing by healthcare staff and members of the public, pregnant women are subject to a barrage of advice on “good” motherhood in popular media. The well-known tome What to Expect When You’re Expecting, for example, tells the mother to consider before eating: “Is this T he E thics of Pa r enthood 

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the best bite I can give my baby?” They then sternly instruct her, “If it’ll only benefit your sweet tooth or appease your appetite, put your fork down.”12 As Rebecca Kukla observes, maternal responsibility has been escalated here to the point that “eating simply because one is hungry (‘to appease your appetite’) is akin to maternal betrayal.”13 This escalation has manifested in the prosecution of some women—for behaviors such as drug abuse and falling down the stairs—under child endangerment laws interpreted to include “fetal neglect” or “fetal endangerment.”14 Some philosophers have argued that maternal duties to the fetus include not only refraining from activities (such as the use of alcohol) that are known to present risks to fetal well-being but also to accept interventions such as cesarean section to ensure that well-being.15 Recent years have seen a spotlight on violations of the ordinary right to medical autonomy, including the right to refuse medical treatment, in the case of some pregnant and laboring women.16 Court-ordered cesarean section and other forced interventions represent one end of a spectrum of obstetric violence and disrespect, at the other end of which we find social pressures on pregnant women to give birth in certain ways or specific positions, following prescribed timelines.17 Many philosophers—and particularly feminist scholars—have criticized the elevation of fetal rights at the cost of maternal autonomy. It has nonetheless been observed by several scholars that, according to widely held intuitions about pregnancy and maternal choice, some behaviors (specifically, those that pose a significant threat to fetal development) are morally blameworthy.18 Philosophers such as Tom Campbell and Anita McKay have argued, for example, that we may consistently believe that abortion is morally permissible and that, if a woman chooses to carry a pregnancy to term, she ought not to act in ways that she knows may harm the fetus qua future child.19 Such arguments—much like the causal views of parental obligation discussed earlier—are often grounded in the widely held belief that causal responsibility for harm often gives rise to moral responsibility. Of course, the environment in which a woman lives— including factors like the noise of her workplace, the 252 

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air quality of her neighborhood, and her partner’s decision to smoke—may all contribute to, or detract from, fetal development. The health of gametes used in reproduction will likewise have an impact on fetal outcomes. Some scholars have argued explicitly that other individuals (such as doctors who act negligently or recklessly in facilitating procreation) therefore bear some of the responsibility for adverse outcomes for future children.20 However, the focus of moral (and medical) discussion largely remains on the pregnant woman herself, as the person whose actions are most directly connected to fetal outcomes. Suppose for a moment that we are indeed obliged to give our children the “best possible” start in life: Does that mean that parental obligations are dependent on one’s social context? We can only debate the obligation to use eugenic embryo selection because the technology required for this is now accessible. Even if parents are obliged to undertake it now (a matter on which ethicists disagree vehemently),21 they could not have had this obligation in the 1950s. The notion that parental obligations escalate relative to the available technology is simple common sense for many—for example, those who believe that parents have a moral obligation to have children vaccinated against polio and other diseases, if such vaccines are accessible. However, the same possibility is concerning for some. For example, feminist philosophers have observed that the development of ectogenesis could one day lead to a state of affairs in which women who choose to carry their own pregnancies are seen as bad parents for failing to provide their fetuses with the perfectly controlled environment of an artificial womb.22 Indeed, this is the picture of society presented in numerous sci-fi novels, in which the choice of “natural” pregnancy is considered as irresponsible for future generations as heavy drinking is for pregnant women in our own.23

T H E R O OTS O F PA R E N TA L O B L I G AT I O N S Philosophical accounts of parental obligation can be roughly divided into two broad camps: accounts

of what biological parents owe their offspring and accounts of what social parents owe the children they raise. These often overlap, since some philosophers hold that biological parents are obliged to embrace the social role of parent and raise their offspring. For example, a number of scholars have argued that sperm and egg donors shirk their moral obligations to their offspring by allowing them to be raised by (usually unknown) others; they argue that the parental obligations we incur by conceiving children are inalienable.24 Other scholars, however, argue that this is not the case, and that biological parents simply acquire the more minimal responsibility to ensure that someone raises their offspring.25 The person who does take up that task will then have full parental obligations. Many of these accounts tie causal responsibility for a child’s existence to moral responsibility for their needs. The moral obligation to act as a parent to one’s offspring is therefore often explained by appeal to the fact that the actions of biological parents cause children to exist in a needy and vulnerable state. In the same way that I am responsible for mitigating or compensating the harm I cause someone if I hit them with my car, those who procreate are responsible for mitigating the harm that would come to their offspring if someone did not care for them.26 This is known as the causal approach to parental obligation. Between proponents of causal approaches, there is significant variation—as shown previously, philosophers disagree on whether these obligations can be transferred or delegated to others, or whether biological parents must take on the social role of parent themselves. Rivka Weinberg suggests that “when you incur parental responsibility, and thereby the responsibility to love your child, it may be your love that is required since it is those parentally responsible for the child, and not just anybody, who must love the child.”27 Bernard Prusak, similarly, notes that since emotional support is something that children clearly need in order to deal with life’s burdens—and biological parents are the ones that impose those burdens on the child by bringing them into existence—biological parents have “a prima facie duty to develop an affective bond with the children whom they bring

into being. In other words, they have an obligation to love these children.”28 For other philosophers, such as Tim Bayne, biological parents and others involved in the reproductive process have a more minimal duty—to “exercise their procreative role responsibly.”29 Likewise, for Lindsey Porter, full parental obligations are acquired only by those who take on the social role of parent. “Makers,” or those involved in bringing children into existence (such as gamete donors, gestational mothers, IVF doctors, and so on) have the less weighty obligation “to make the child’s existence a good one to the extent that one can.”30 It is worth noting that the social parenthood role fulfills most of the needs identified earlier—for safety, affection, discipline, and so on. Perhaps if society was organized differently, and these needs were provided for by many individuals or institutions, fewer philosophers would think that procreators are morally obliged to parent their children. Moral considerations do not take place in a vacuum. As Jeffrey Blustein notes, it is not merely the fact of children’s neediness that means biological parents would be causally responsible for their suffering if not provided with due care. It is also because, in our social context, “child-rearing is arranged in such a way that those who cause a child to exist are in a special position to do something to prevent this harm from occurring.”31 A different approach taken by some philosophers is voluntarism, according to which the specific and weighty obligations we normally ascribe to parents—such as the obligation to love and nurture one’s child in the context of an intimate relationship, as well as to provide for its basic needs—cannot be acquired unintentionally. One must accept the parental role in order to take on such obligations. Elizabeth Brake, for example, argues that the moral costs incurred by bringing vulnerable and needy people into existence are far more minimal than the obligations we ascribe to (social) parents; the latter can only be acquired voluntarily.32 We may be obliged to ensure a minimally decent existence for the children we bring into being, but that does not entail that we are obliged to parent them ourselves. This has implications for our beliefs and practices regarding things T he E thics of Pa r enthood 

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like child support. According to Brake, the man who unintentionally impregnates his sexual partner due to contraceptive failure may be responsible for sharing the costs associated with pregnancy, but as long as the woman has the choice to abort the pregnancy, he likewise has a choice whether or not to take on parental responsibilities.33 Finally, sitting somewhere between causal theorists and voluntarists, we find scholars like Joseph Millum, who explains the origins of parental obligations by appeal to a “conventional-acts” account. He notes that there are actions we perform that give rise to moral obligations not because of the action itself but because of the conventional meaning of that action. Exchanging rings with someone, for example, is not an action that would itself make me obliged to take special care of them. In our social context, however, this action signifies a commitment to that person that gives rise to specific moral duties. Certain actions are therefore morally transformative within a given context.34 Millum argues that this approach explains why some people acquire parental responsibilities while others do not, despite their roles in the child’s creation: in standard cases, we expect biological parents to raise the children they produce, but we do not expect this of gamete donors, midwives, and IVF doctors. Mere causal responsibility for a child’s birth does not do all the work here—rather, it is “being a voluntary cause whom convention singles out as the performer of morally transformative actions.”35 Or, as Onora O’Neill puts it, “a standard way of acquiring obligations is to undertake them, and a standard way of undertaking parental obligations is to decide to procreate.”36

TH E RIGHTS O F PA R E NTS The rights of parents to custody, care, and control of their children are enshrined and protected in law and usually cannot be terminated without evidence that the parents of a child are unfit.37 But do these legal rights reflect equivalent moral rights? If so, where do these rights come from?

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These questions make their appearance most frequently in the context of conflicting claims to the parenthood of a child. Philosophers of parenthood have aimed to give accounts of parental rights that provide a resolution when multiple candidates for custody crop up simultaneously—for example, when surrogacy or gamete donation arrangements collapse, or when the genetic father of a child (previously not in the picture) appears to block the child’s adoption by a step-parent.38 In response to the idea that the hypothetical “best possible parent” might have moral rights to parent a child, many philosophers have also produced accounts explicitly defending the rights of biological parents to keep their own children, even when a more suitable candidate might be available. These accounts of parental rights have taken a wide variety of approaches. For example, some philosophers have defended proprietary views, which defend the rights of parents to custody by appeal to their initial ownership of their sperm and eggs.39 Such accounts straightforwardly solve the problem of competing claims in surrogacy and gamete donation (assuming that gamete donation constitutes a transfer of ownership of the sperm and/or eggs). However, they are open to criticism on various grounds—David Archard, for example, notes that most would reject the notion that children are property, and if they were, “then it is hard to see why ownership should not be lifelong.”40 A different approach taken by some philosophers is an appeal to parental labor. As Joseph Millum puts it, “Ceteris paribus, the extent of an agent’s stake in an object is proportional to the amount of appropriate work he or she has put into that object.”41 At first glance, this might appear to be just another proprietary account, rooted in Lockean labor theory. However, Millum argues that the investment principle “also applies to objects we cannot own, but nevertheless is a way in which we may acquire those (non-ownership) rights appropriate to them.”42 The people with the right to parent the child are, then, those people who have performed the most parental labor. Another approach to justifying parental rights focuses on parent–child relationships and appeals to

fundamental liberty rights in arguing that parents and children alike have the moral right to keep these relationships free from unwarranted disruption or interference.43 The parental relationship often begins to develop during gestation; while children’s needs might, in theory, be better met by wealthier or more intelligent candidate parents, the redistribution of children at birth would have therefore “destroyed already formed parent-baby relationships.”44 These accounts often emphasize the importance of parents’ interests in keeping custody of their children, whether because of the fundamental value of the intimate parent–child relationship or because of the grievous harm that could be caused by disrupting such relationships.45 In response to the competing claims that arise when one or more parties to surrogacy or gamete donation reneges on their initial agreement, some philosophers and legal scholars have focused on intentions as a key determining factor for parental rights.46 John Lawrence Hill, for example, argues that the role of commissioning parents as “prime movers” in surrogacy arrangements, together with the surrogate mother’s original promise of not to claim parental rights, results in the moral priority of the commissioning parents.47 In the case of competing claims, intentionality “acts as a trump for the intended parents.”48 Of course, intentions can change over time, and may be hidden by one or more parties—for this reason, some scholars emphasize the moral significance of contracts and formal custody agreements in generating parental rights, rather than relying on bare intentions.49

D O WE HAVE A R I G H T TO CH I L D R EN? It is crucial to note that parental rights are distinct from the right to become a parent. While many philosophers have (as seen in the last section) defended parents’ rights to keep custody and reasonable control of their children, few have defended the right of would-be parents to be provided with children if they want them. Many countries strictly regulate

foster care, adoption, and surrogacy, for example, by prohibiting payment for adoption and/or requiring prospective parents to pass background checks and other tests of suitability before a child is provided. But what about the right to create children? Procreative liberty is nearly always defined as a negative right: the right to be free from unjust interference in one’s procreative decisions.50 While it is widely held that interventions such as forced sterilization constitute an abhorrent violation of fundamental rights, there is significant disagreement about the extent to which people are owed positive aid in reproducing. Certainly nobody has a right to be provided with a procreative partner to have children with—but it might be claimed that they have the right to access IVF, donor gametes, or other forms of assisted reproduction. Such rights cannot in practice be rights to simple freedom from interference. As Robert Sparrow notes, “Some reproductive technologies cannot achieve their intended purpose without legislative or judicial action that extends the law in relation to parenting, custody, and adoption.”51 If reproductive liberty means the freedom to use technologies such as IVF or artificial insemination, it requires some level of intervention by the state. Similarly, to the extent that successful adoption, gamete donation, and surrogacy arrangements require the cooperation of public authorities in settling matters of legal parenthood, the freedom to engage in such arrangements cannot be described as a purely negative freedom. If the right to have children encompasses reproductive liberties of this kind, people must have certain positive rights associated with having children. The scope of these rights may well depend on the society in which they live, and the share of collective resources considered owing to any individual in that society; principles of fairness may limit the claims any given individual can make to assistance in having children. Another limitation on reproductive liberty, Sparrow argues, is the context of reproduction in which we live; this context explains the moral and social importance of reproduction, and may therefore justify certain positive rights associated with reproductive

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liberty. When a person’s reproductive ambitions are frustrated, “the moral weight of these frustrations depends on one’s knowing that these experiences are central experiences in a normal human life, such that it is appropriate for individuals to regret it deeply when they are unable to experience them.”52 Most people have an expectation of fertility, around which their life plan may be (and often is) shaped; it is not only the pain of having this expectation frustrated, but that it was a reasonable expectation to have, which establishes the importance of reproductive liberty. Unreasonable expectations, on the other hand, may not ground any right to positive assistance in one’s reproductive projects. Sparrow’s example here is male pregnancy: while some men may have a strong desire to experience pregnancy, “this desire is not a desire to enjoy the success of normal reproductive projects such that it engages with one’s sense of the especial value of reproduction and establishes an obligation to respect or promote it.”53 If we agree with this reasoning, then the value of reproductive liberty may ground a claim to some positive assistance—for example, access to IVF, laws accommodating gamete donation, and so on—in achieving parenthood, in situations where parenthood is a reasonable expectation. But this expectation will always be relative to the standards of our times. If new reproductive technologies such as artificial wombs and stem cell–derived gametes become widely accessible, our notion of “normal reproductive projects” may shift. In response, scholars such as Mary Warnock warn against the interpretation of rights to children as positive rights—she voices her concern that people might become “so much obsessed with their right to have a child, and to have it in the way they want, even with the characteristics they would prefer, that they forget the old sense of astonishment and gratitude that came with the birth of a child.”54

CO NCLUSION Biological reproduction and parenthood often come as a package deal, but as we have seen in this chapter, there are many situations in which they come 256 

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apart. Many such situations are now comfortably accommodated in our understanding of the family; however, globalization and advances in medical technology have given rise to new and complex dilemmas for philosophers, medical professionals, and lawyers to answer. For example, the case of a Japanese businessman who commissioned thirteen children by different surrogate mothers has raised legal and ethical questions about who should be allowed to acquire children, and how they may go about it.55 Recent years have also seen significant changes to transnational surrogacy laws after commissioning parents have changed their minds about wanting a child, following divorce in one high-profile case, and the discovery of the child’s health complications in another.56 The prohibition of paid adoption and surrogacy in many countries is grounded firmly in the idea that custody changes should be in the best interests of children, and not for the sake of fulfilling adult desires. Similar views underpin ethical objections to assisted reproduction for specific objectives, such as the creation of “savior siblings”—children who will be a genetic match for siblings in need of stem cells, blood, marrow, or organ donations.57 Such projects prompt us to question not only whether we have the right to children, but whether we have the right to particular children. The possibility of deriving artificial gametes from stem cells—approaching on the scientific horizon— has likewise motivated ethical inquiries about the methods by which we bring children into existence.58 Philosophers have noted that these gametes could provide options for same-sex couples to have children together, and (if used in place of donor gametes) they could alleviate parents’ fears that their relationship with their child will be undermined by a donor’s genetic link.59 Some theorists have nonetheless raised concerns that the preference for artificial gametes over donor gametes would both be symptomatic of, and reinforce, existing ideologies that tie parenthood closely to genetic connection.60 Thus, while we rely on both biological and social parenthood as basic elements of the human life story, they also raise myriad ethical questions. Who can have children, and which children, and under what

circumstances? What are parents obliged to do for those children when they arrive (or indeed, before they arrive)? Such questions are not of purely philosophical interest, but play a crucial role in informing legislation, social policy, and scientific inquiry—not to mention the monumental project of parenting children from day to day.

N OTE S 1. Miranda Bryant, “Couple Sues Clinic over IVF Mix-up after Giving Birth to Twins Unrelated to Them,” The Guardian, July 9, 2019, sec. IVF, https://www.theguard ian.com/society/2019/jul/09/couple-sues-fertility-clin ic-ivf-mix-up. 2. Joseph Migga Kizza, Ethical and Social Issues in the Information Age, 6th ed. (Springer, 2017), 242. 3.  Cyra Akila Choudhury, Transnational Commercial Surrogacy Contracts, Conflicts, and the Prospects of International Legal Regulation (Oxford University Press, 2016), sec. III.a, https:// www.oxfordhandbooks.com/view/10.1093/oxford hb/9780199935352.001.0001/oxfordhb-9780199935352 -e-38; Leslie R. Schover, “Cross-Border Surrogacy: The Case of Baby Gammy Highlights the Need for Global Agreement on Protections for All Parties,” Fertility and Sterility 102, no. 5 (November 1, 2014): 1258–59, https://doi.org/10.1016/j .fertnstert.2014.08.017. 4.  Bernard G. Prusak, “The Costs of Procreation,” Journal of Social Philosophy 42, no. 1 (March 2011): 70, https:// doi.org/10.1111/j.1467-9833.2010.01519.x. 5.  Julian Savulescu, “Procreative Beneficence: Why We Should Select the Best Children,” Bioethics 15, no. 5–6 (2001): 413–26, https://doi.org/10.1111/1467-8519.00251. 6. Peter Vallentyne, “Rights and Duties of Childrearing,” William & Mary Bill of Rights Journal 11, no. 3 (April 2003): 991–1010. 7.  Joel Feinberg, “The Child’s Right to an Open Future,” in Philosophy of Education: An Anthology, ed. Randall R. Curren (Blackwell, 2007). 8.  Joseph Millum, “The Foundation of the Child’s Right to an Open Future,” Journal of Social Philosophy 45, no. 4 (2014): 530, https://doi.org/10.1111/josp.12076. 9.  Savulescu, “Procreative Beneficence,” 413–26. 10.  Seana Valentine Shiffrin, “Wrongful Life, Procreative Responsibility, and the Significance of Harm,” Legal Theory 5, no. 2 (June 1999): 117–48, https://doi.org/10.1017 /S1352325299052015; Jonathan Glover, Causing Death and Saving Lives (Penguin Books, 1977). 11.  Teresa Baron, “Nobody Puts Baby in the Container: The Foetal Container Model at Work in Medicine and Commercial Surrogacy,” Journal of Applied Philosophy 36, no. 3 (July 2019): 491–505, https://doi.org/10.1111/japp.12336.

12.  Heidi Eisenberg Murkoff, Arlene Eisenberg, and Sandee Eisenberg Hathaway, What to Expect When You’re Expecting, 3rd ed. (Workman Publishing, 2002), 80. 13.  Rebecca Kukla, “Measuring Mothering,” IJFAB: International Journal of Feminist Approaches to Bioethics 1, no. 1 (March 2008): 81, https://doi.org/10.3138/ijfab.1.1.67. 14.  Michele Goodwin, “Fetal Protection Laws: Moral Panic and the New Constitutional Battlefront,” California Law Review 102, no. 4 (2014): 781–876; Robert G. Costello, “Fetal Endangerment: A Challenge For Criminal Law,” Berkeley Journal of Criminal Law 4, no. 1 (2001): 2. 15.  Neha A. Deshpande and Corrina M. Oxford, “Management of Pregnant Patients Who Refuse Medically Indicated Cesarean Delivery,” Reviews in Obstetrics and Gynecology 5, no. 3–4 (2012): 144–50; Julian Savulescu, “Future People, Involuntary Medical Treatment in Pregnancy and the Duty of Easy Rescue,” Utilitas 19, no. 1 (March 2007): 1–20, https://doi.org/10.1017/S0953820806002317. 16. Maria T. R. Borges, “A Violent Birth: Reframing Coerced Procedures during Childbirth as Obstetric Violence,” Duke Law Journal 67 (2018): 827–62; Dubravka Simonovic, “A Human Rights-Based Approach to Mistreatment and Violence against Women in Reproductive Health Services with a Focus on Childbirth and Obstetric Violence,” Report of the Special Rapporteur on Violence against Women, Its Causes and Consequences (United Nations Human Rights Council, July 11, 2019), http:// digitallibrary.un.org/record/3823698; Rachelle Chadwick, “Ambiguous Subjects: Obstetric Violence, Assemblage and South African Birth Narratives,” Feminism & Psychology 27, no. 4 (2017): 489–509. 17.  Jessica Flanigan, “Obstetric Autonomy and Informed Consent,” Ethical Theory and Moral Practice 19, no. 1 (February 2016): 225–44, https://doi.org/10.1007/s10677015-9610-8; Sam Halliday, Autonomy and Pregnancy: A Comparative Analysis of Compelled Obstetric Intervention (Routledge, 2016); Cheryl Tatano Beck, “A Secondary Analysis of Mistreatment of Women During Childbirth in Health Care Facilities,” Journal of Obstetric, Gynecologic & Neonatal Nursing 47, no. 1 (2018): 94–104, https://doi.org/10.1016/j. jogn.2016.08.015; Lynn P. Freedman and Margaret E. Kruk, “Disrespect and Abuse of Women in Childbirth: Challenging the Global Quality and Accountability Agendas,” The Lancet 384, no. 9948 (20 September 2014): e42–44, https:// doi.org/10.1016/S0140-6736(14)60859-X; Emily Martin, The Woman in the Body, 2nd ed. (Milton Keynes: Oxford University Press, 1989); Nancy K. Rhoden, “The Judge in the Delivery Room: The Emergence of Court-Ordered Cesareans,” California Law Review 74, no. 6 (1986): 1951–2030; Julie D. Cantor, “Court-Ordered Care—A Complication of Pregnancy to Avoid,” New England Journal of Medicine 366, no. 24 (2012): 2237–40. 18. Savulescu, “Future People, Involuntary Medical Treatment in Pregnancy and the Duty of Easy Rescue,” 1–20; Glover, Causing Death and Saving Lives. T he E thics of Pa r enthood 

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19. T. D. Campbell and A. J. M. McKay, “Antenatal Injury and the Rights of the Foetus,” The Philosophical Quarterly 28, no. 110 (January 1978): 17, https://doi .org/10.2307/2219040. 20.  Shiffrin, “Wrongful Life, Procreative Responsibility, and the Significance of Harm”; Melissa Seymour Fahmy, “On Procreative Responsibility in Assisted and Collaborative Reproduction,” Ethical Theory and Moral Practice 16, no. 1 (February 2013): 55–70, https://doi.org/10.1007/s10677 -011-9330-7. 21.  Jakob Elster, “Procreative Beneficence—Cui Bono?,” Bioethics 25, no. 9 (2011): 482–88, https://doi.org/10.1111 /j.1467-8519.2009.01794.x; Andrew Hotke, “The Principle of Procreative Beneficence: Old Arguments and A New Challenge,” Bioethics 28, no. 5 (2014): 255–62, https://doi .org/10.1111/j.1467-8519.2012.01999.x; Rebecca Bennett, “When Intuition Is Not Enough: Why the Principle of Procreative Beneficence Must Work Much Harder to Justify Its Eugenic Vision,” Bioethics 28, no. 9 (2014): 447–55, https:// doi.org/10.1111/bioe.12044. 22.  Giulia Cavaliere, “Gestation, Equality and Freedom: Ectogenesis as a Political Perspective,” Journal of Medical Ethics (November 8, 2019): 1–7, https://doi.org/10.1136 /medethics-2019-105691; Rosemarie Tong, “Out-of-Body Gestation: In Whose Best Interests?,” in Ectogenesis: Artificial Womb Technology and the Future of Human Reproduction, eds. Scott Gelfand and John R. Shook (Editions Rodopi, 2006), 59–76. 23. Anne Charnock, Dreams before the Start of Time (47North, 2017); Helen Sedgwick, The Growing Season (London: Harvill Secker, 2017). 24.  J. David Velleman, “The Gift of Life,” Philosophy & Public Affairs 36, no. 3 (2008): 245–66; Reuven Brandt, “The Transfer and Delegation of Responsibilities for Genetic Offspring in Gamete Provision,” Journal of Applied Philosophy 34, no. 5 (November 2017): 665–78, https://doi .org/10.1111/japp.12251; Daniel Callahan, The Roots of Bioethics: Health, Progress, Technology, Death (Oxford University Press, 2012), https://doi.org/10.1093/acprof:oso /9780199931378.001.0001. 25. David Archard, “The Obligations and Responsibilities of Parenthood,” in Procreation and Parenthood: The Ethics of Bearing and Rearing Children, eds. David Archard and David Benatar (Oxford; New York: Oxford University Press, 2010), 103–27; Lindsey Porter, “Why and How to Prefer a Causal Account of Parenthood,” Journal of Social Philosophy 45, no. 2 (2014): 182–202. 26. James Lindemann Nelson, “Parental Obligations and the Ethics of Surrogacy: A Causal Perspective,” Public Affairs Quarterly 5, no. 1 (1991): 49–61. 27.  Rivka Weinberg, “The Moral Complexity of Sperm Donation,” Bioethics 22, no. 3 (March 2008): 174, https:// doi.org/10.1111/j.1467-8519.2007.00624.x. 28.  Prusak, “The Costs of Procreation,” 69.

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29.  Tim Bayne, “Gamete Donation and Parental Responsibility,” Journal of Applied Philosophy 20, no. 1 (2003): 85. 30.  Porter, “Why and How to Prefer a Causal Account of Parenthood,” 193. 31.  Jeffrey Blustein, Parents and Children: The Ethics of the Family (New York: Oxford University Press, 1982), 146. 32. Elizabeth Brake, “Willing Parents: A Voluntarist Account of Parental Role Obligations,” in Procreation and Parenthood: The Ethics of Bearing and Rearing Children, eds. David Archard and David Benatar (Oxford; New York: Oxford University Press, 2010), 151–77. 33.  Elizabeth Brake, “Fatherhood and Child Support: Do Men Have a Right to Choose?,” Journal of Applied Philosophy 22, no. 1 (2005): 55–73. 34. Joseph Millum, “How Do We Acquire Parental Responsibilities?,” Social Theory and Practice 34, no. 1 (January 2008): 80–81. 35.  Millum, “How Do We Acquire Parental Responsibilities?,” 82. 36.  Onora O’Neill, “Begetting, Bearing, and Rearing,” in Having Children: Philosophical and Legal Reflections on Parenthood, eds. Onora O’Neill and William Ruddick (New York: Oxford University Press, 1979), 26. 37.  K. T. Bartlett, “Re-thinking Parenthood as an Exclusive Status: The Need for Legal Alternatives When the Premise of the Nuclear Family Has Failed,” Virginia Law Review 70 (1984): 879–963. 38. Laura Oren, “Thwarted Fathers or Pop-Up Pops?: How to Determine When Putative Fathers Can Block the Adoption of Their Newborn Children,” Family Law Quarterly 40, no. 2, (2006): 153–90; Nanette R. Elster, “Assisted Reproductive Technologies: Contracts, Consents, and Controversies,” American Journal of Family Law 18, no. 4 (2005): 193–99; Eithne Mills and James McConvill, “Family Law in Australia: Re Patrick and the Matter of Child A,” The International Journal of Human Rights 8, no. 1 (January 1, 2004): 17–44, https://doi.org/10.1080/1364298042000212529. 39. Edgar Page, “Donation, Surrogacy and Adoption,” Journal of Applied Philosophy 2, no. 2 (1985): 161–72; Barbara Hall, “The Origin of Parental Rights,” Public Affairs Quarterly 13, no. 1 (1999): 73–82. 40. David Archard, “Child Abuse: Parental Rights and the Interests of the Child,” Journal of Applied Philosophy 7, no. 2 (October 1990): 186, https://doi.org/10.1111 /j.1468-5930.1990.tb00266.x. 41. Joseph Millum, “How Do We Acquire Parental Rights?,” Social Theory and Practice 36, no. 1 (2010): 114. 42.  Millum, “How Do We Acquire Parental Rights?,” 118. 43.  Anca Gheaus, “The Right to Parent One’s Biological Baby,” Journal of Political Philosophy 20, no. 4 (December 2012): 432–55, https://doi.org/10.1111/j.1467-9760.2011.00402.x; Harry Brighouse and Adam Swift, “‘Parents’ Rights and the Value of the Family,” Ethics 117, no. 1 (October 2006): 80–108, https://doi.org/10.1086/508034; Ferdinand Schoeman,

“Rights of Children, Rights of Parents, and the Moral Basis of the Family,” Ethics 91, no. 1 (1980): 6–19. 44.  Gheaus, “The Right to Parent One’s Biological Baby,” 436. 45.  Teresa Baron, “Gestationalism and the Rights of Adolescent Mothers,” Moral Philosophy and Politics 7, no. 2 (2020): 239–54, https://doi.org/10.1515/mopp-2019-0045. 46.  Andrea E. Stumpf, “Redefining Mother: A Legal Matrix for New Reproductive Technologies,” The Yale Law Journal 96, no. 1 (November 1986): 187–208, https://doi .org/10.2307/796440; Marjorie Maguire Shultz, “Reproductive Technology and Intent-Based Parenthood: An Opportunity for Gender Neutrality,” Wisconsin Law Review 297 (1990): 297–398. 47. J. Hill, “‘What Does It Mean to Be a Parent?’ The Claims of Biology as the Basis for Parental Rights,” New York University Law Review 66 (1991): 414–19. 48.  Hill, “What Does It Mean to Be a Parent?,” 387. 49.  Elster, “Assisted Reproductive Technologies”; Richard A. Epstein, “Surrogacy: The Case for Full Contractual Enforcement,” Virginia Law Review 81, no. 8 (November 1995): 2305, https://doi.org/10.2307/1073580. 50.  David Archard, “Procreating,” in The Cambridge Companion to Life and Death, ed. Steven Luper, 1st ed. (Cambridge University Press, 2014), 231–42, https://doi.org/10.1017 /CCO9781139149129.018; Laura Shanner, “The Right to Procreate: Where Rights Claims Have Gone Wrong,” McGill Law Journal 40 (1995): 823–74. 51.  Robert Sparrow, “Is It ‘Every Man’s Right to Have Babies If He Wants Them’?: Male Pregnancy and the Limits of Reproductive Liberty,” Kennedy Institute of Ethics Journal 18, no. 3 (2008): 281, https://doi.org/10.1353/ken.0.0198. 52.  Sparrow, “Is It ‘Every Man’s Right to Have Babies If He Wants Them’?,” 286.

53. Ibid. 54.  Mary Warnock, Making Babies: Is There a Right to Have Children? (Oxford: Oxford University Press, 2002), 113–14. 55.  Daniel Hurst, “Japanese Man Wins Sole Custody of 13 Surrogacy Children,” The Guardian, February 20, 2018, sec. Japan, http://www.theguardian.com/world/2018/feb/20 /japanese-man-custody-13-surrogate-children-thai-court. 56. Choudhury, Transnational Commercial Surrogacy Contracts, Conflicts, and the Prospects of International Legal Regulation; Schover, “Cross-Border Surrogacy.” 57. Christine Overall, Why Have Children?: The Ethical Debate (The MIT Press, 2012), 81–93, https://www.jstor .org/stable/j.ctt5hhd2w. 58.  A. J. Newson and A. C. Smajdor, “Artificial Gametes: New Paths to Parenthood?,” Journal of Medical Ethics 31, no. 3 (2005): 184–86. 59. Seppe Segers et al., “Balancing Ethical Pros and Cons of Stem Cell Derived Gametes,” Annals of Biomedical Engineering 45, no. 7 (July 2017): 1620–32, https:// doi.org/10.1007/s10439-017-1793-9; Timothy F. Murphy, “Pathways to Genetic Parenthood for Same-Sex Couples,” Journal of Medical Ethics 44, no. 12 (December 2018): 823–24, https://doi.org/10.1136/medethics-2017-104291; Timothy F. Murphy, “The Meaning of Synthetic Gametes for Gay and Lesbian People and Bioethics Too,” Journal of Medical Ethics 40, no. 11 (November 2014): 762–65, https://doi .org/10.1136/medethics-2013-101699. 60.  Heidi Mertes, “Gamete Derivation from Stem Cells: Revisiting the Concept of Genetic Parenthood,” Journal of Medical Ethics 40, no. 11 (2014): 744–47; Robert Sparrow, “Cloning, Parenthood, and Genetic Relatedness,” Bioethics 20, no. 6 (November 2006): 308–18, https://doi .org/10.1111/j.1467-8519.2006.00509.x.

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CHAPTER 24

Reproductive Technologies for Queer and Trans People Doris Leibetseder

T

his chapter aims to shed light on the inclusiveness of Assisted Reproductive Technology (ART) for queer and trans people. Queer people do not fit into the traditional gender and sexuality norms. Commonly, “queer” describes people who are not straight (heterosexual) or cisgender and is a general umbrella term for LGBTIQ* people. Trans is someone “who does not feel comfortable in the gender role they were attributed with at birth, or who has a gender identity at odds with the labels ‘man’ or ‘woman’ credited to them by formal authorities.”1 According to Queer Theory, the verb “to queer” describes the political fight against hierarchical normative processes, such as hetero- and homonormativity. Queer politics are entangled with anti-racist, anti-sexist, anti-ableist, and trans activism. Early on, the term “queer” was used by Gloria Anzalduá (1981) to define a politics of alliances that is based on the entanglement of complex experiences of oppressions. In the political sense of “queerness,” some ethical conflicts will be highlighted arising from queer and trans access to ART. However, this chapter will first give a short overview of the definitions and history of ART. It will then focus on the challenges that queer and trans people, who want to use ART, face and how those could be

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improved. The bioethical issues for queer and trans people are not entirely solved through having access to ART as the example of gay fathers using surrogacy shows. Through concepts such as stratified reproduction, queer necropolitics, and reproductive justice we can identify and analyze the remaining bioethical challenges in inclusive ART processes.

DE FI N I T I O N ( S ) The definition of ART varies across different contexts. According to the International Committee for Monitoring Assisted Reproductive Technology and the World Health Organization, ART includes “all treatments or procedures that include the in vitro handling of both human oocytes and sperm, or embryos, for the purpose of establishing a pregnancy. . . . ART does not include assisted insemination (artificial insemination) using sperm from either a woman’s partner or a sperm donor.”2 Their definition explicitly does not include assisted insemination (AI) with sperm from a partner or donor, even if it is carried out in a medical setting. The same exclusion occurs in the ART definition of the U.S. Centers for Disease Control and Prevention and is made more explicit:

ART includes all fertility treatments in which either eggs or embryos are handled. In general, ART procedures involve surgically removing eggs from a woman’s ovaries, combining them with sperm in the laboratory, and returning them to the woman’s body or donating them to another woman. They do NOT include treatments in which only sperm are handled . . . or procedures in which a woman takes medicine only to stimulate egg production without the intention of having eggs retrieved.3 However, the first definition is a bit more inclusive and thus is preferred, as the second one is more gender essentialist and does not consider gender diversity such as trans men’s fertility procedures. However, both definitions use the word “woman” based on cisgendered and heterosexual assumptions and are therefore not queer and trans inclusive. In order to make the first quote more inclusive, it would just need to leave “woman’s” out. This was an example of how definitions of ART need to change to be more inclusive for certain social groups. The most common types of ART are: IVF (in vitro fertilization), which combines an ovum with sperm in a laboratory dish, after fertilization the embryo is transferred to the uterus; ICSI (intracytoplasmic sperm injection), here a sperm cell is injected into an ovum; gestational surrogacy, where a surrogate gestates a non-genetic-related embryo with their uterus, and after birth the baby is adopted by the intended parents.4

H ISTORY Since 1978, when the first “test tube baby” was born, ART has become more and more available. In 2012 the milestone of 5 million babies born with the help of these technologies worldwide was reached.5 The development of ARTs over the past four decades can be divided in three phases according to Kate Hampshire and Bob Simpson. The first phase consists of the first two decades in which ART was only accessible

privately to a few people and was cost intensive. The second phase started in the late 1990s and brought a geographical extension of ART from Europe, North America, and the Middle East to Israel, China, Ecuador, Egypt, Lebanon, Iran, India, and Sri Lanka, mostly privately paid, except in Israel.6 The third phase has begun just recently with the spread toward public funding, as ART forms part of a standardized routine for infertility both in the Global North and Global South.7 During the second phase, only wealthy intended parents could afford ART and, if necessary, to travel across countries (known as “reproductive tourism” or “cross-border reproductive travel” among others) for certain procedures. However, in the third phase, the reproductive exchange accelerated globally with not solely intended parents moving but also gametes (sperm, ova, embryos) and gamete donors (especially egg donors) and surrogates.8 Some of them are flown to other countries or even continents (e.g., before giving birth in the case of surrogates), because of prohibitive ART laws in their country of origin or for economic reasons. Only the Covid-19 pandemic slowed down this acceleration.9

QUEER AND TRANS PEOPLE AND ART It was not only reproductive technologies that expanded rapidly but also research about ART. It started with clinical research and feminist social science and now consists of many interdisciplinary fields that intend to untangle the (bio)medical knot of these technologies.10 These fields are intersections of “feminism, science and technology studies, medical sociology and medical anthropology” and public health,11 psychology, and legal studies.12 Contentwise the research is centered on New Kinship Studies, particular ARTs, and transnational perspectives.13 Similar to the three phases of ART, developments of research about ART can be divided into studies that in the first phase “focused primarily on white, middle-class women in the Global North”; the second phase expanded to other locations, such as India and Egypt, but still dealt mostly with the elite; the third

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and current one focuses more on “marginalized populations,” such as queer and trans people.14 Recent insights into the studies of ART call for more research on “intersecting inequalities and stratifications that structure the lived experiences” of these reproductive technologies with a focus on intersectional experiences and general ART and not just on one single technical procedure.15 As the research field of ART is exploding, it is impossible to give insight into all current bioethical issues surrounding ART in this short chapter. I will therefore present an example of certain cases and bioethical concerns, which is queer and trans (or LGBTIQ*) people’s reproduction with ART. The state-of-the-art research on ARTs centers on the emerging understanding that a multiplicity of relationships, kinship and family structures, as well as diverse genders and sexualities, are increasingly formally recognized16 and make use of ARTs.17 ARTs afford the possibility of new reproductive relations, as queer and transgender people are able to form non-genetically and genetically related families and kinship relations. This has given rise to a new concept of reproductive rights to combat discrimination in access to ART and the right to decide about reproduction. Studies examined the experiences, practices, and possible improvements for preserving fertility and achieving reproduction for queer and trans people with ART.18 The recommendations for a more inclusive access to ART are the results of a European study19 about queer and trans people’s experiences with ART with the title “QTReproART. Towards an Inclusive Common European Framework for Assisted Reproductive Technologies (ART): Queer and Transgender Reproduction in the Age of ART.”20 The outcomes can be separated into the following issues (order is according to their importance) concerning (1) the law and guidelines on ART (who is allowed and how to use ARTs); (2) the legal situation of the newborn baby (citizenship, parenthood); (3) terminology in the administrative forms and documents (e.g., can a father be the birthing person?); (4) treatment by the medical staff (LGBTIQ training for staff); and (5) medical processes. Concerning the first point, the legal regulation on ART, each state has its own regulations, and if 262 

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those are too prohibitive for some people, they will, if they have the time and money, be looking for fertility treatments abroad. To avoid this, it would help to at least allow the same ART treatments for single queer and trans (QT) people and QT persons with partners as for heterosexual people with fertility problems. Furthermore, home insemination should be allowed, and it should be easier to obtain the necessary documentation such as a birth certificate and legal parenthood without a notarial act or a certification from a clinic. The advantage is that home insemination is less costly and thus accessible for more QT people. One particular problem for trans and intersex people (still) in many states is the requirement of sterilization or body modifications that reduce fertility. In 2017 the European Court of Human Rights announced that forced sterilization is illegal, but some of its member states still demand it in exchange for gender recognition documents and medical care. This can also lead to some trans people not even expressing their reproductive wishes, because they fear that they will not be perceived as being “trans” enough. Another aspect with medical transition and hormonal treatment is that it should be allowed for trans and intersex people to store and use their gametes for free for at least ten years in their home countries. Trans and intersex adolescents who do not have their own gametes yet should be allowed to cryo-preserve their ovarian and testicular tissues. Concerning the second point, the legal situation of the newborn can be improved if obtaining parenthood and citizenship for the baby is made easier. In particular, the second partner, the so-called social partner (non-birthing partner and/or not biologically related partner) should get automatic parental recognition. It should be made easier for trans people to maintain their official parenthood status, even if they have to divorce their partner for their legal gender recognition. All offspring should have access to the primary parental national affiliations and obtain their citizenships automatically without having to prove genetic kinship. The next step would be to harmonize those ART, parenthood, and citizenship laws across Europe and guarantee EU-wide LGBTIQ family rights.

Third, the terminology of the administrative and official certificates has to be correct and more inclusive. For example, birth documents need to be adjusted to trans, non-binary, and same-sex parents, for example, a “birthing father” or “birthing person” (for non-binary people) or two mothers or two fathers should be possible. Also, medical administrative forms (e.g., for extraction of gametes) should be updated and include appropriate and/or gender neutral terminology for trans and intersex people, as some forms for sperm freezing are blue, some forms for egg freezing are pink with stereotypically (curvy) female figures. Fourth, for a better treatment by the medical staff, an LGBTIQ-feminist training for staff is needed to avoid bi-, homo-, trans-, and intersex phobic micro aggressions. It would be best to use the same terminology as the intended parent uses. (See the trainers’ manual, the outcome of the Health4LGBTI project.)21 The training should be done by LGBTIQ organizations. Clinics should be LGBTIQ-certified following a standardized protocol. Best practice examples are midwives and most of the NHS workers in Brighton and medical staff of the StorkKlinik in Denmark (for lesbians). Studies including trans and gender non-binary people in Australia, Canada, Sweden, and the United States also showed the need for LGBTIQ staff training.22 The U.S. study on transgender adolescents mentions one case in which they did not continue their fertility preservation because of negative experiences of being misgendered and being treated disrespectfully.23 A more psychological Swedish study suggested as a coping strategy for trans men to overcome their body dysphoria during fertility treatment that they use non-gendered names for their body parts.24 Gender neutral language is also desired by lesbian and bisexual women25 and by sexual and gender minorities in general.26 Other studies on trans people came to the same conclusion that gender neutral language on forms (and in the web material of clinics) and during conversations (use of right pronouns, names) was important for a positive experience.27 Fifth, medical processes could be improved. There should be standardization on how queer and

trans people can be helped with their reproductive wish. A protocol for this could be developed with LGBTIQ organizations. The obligatory counseling for queer and trans intended parents should be stopped, or at least queer and trans counselors could be provided, or an appropriate training for counselors (e.g., British Infertility Counselling Association) could run a training workshop or update their Practice Guide accordingly. Counseling feels forced and is discriminatory (as heterosexual intended parents do not have to do it), and the counselor is in a power position, because they report back to medical staff. There should be no obligation for queer and trans people to prove that they have been trying to conceive, as for most of them it is impossible to try it in the conventional way. A lesbian couple is suing British NHS because their local clinical commissioning group requires them to pay for twelve rounds of intrauterine insemination or IVF in order to be able to use ART at the NHS, whereas heterosexual couples need to have tried to conceive only for two years. These twelve treatments would cost the couple tens of thousands of pounds.28 These examples of recommendations on how to improve queer and trans access to ART show the complexities involved in reproductive procedures and documentation for people who fall outside of the heteronormative system in our society. However, it is only one ethical perspective to look at challenges and possible discriminations because of sexual orientation and gender identities before, during, and after ART procedures. The bigger ethical viewpoint takes all intersecting inequalities and stratifications into account, as Boydell and Dow, and Valdez and Deomampo suggested for further research. For seeing the bigger picture and what a more holistic bioethical approach means for queer and trans reproduction, I will take gay men’s reproduction through surrogacy as an example. As mentioned in chapter 3 in this handbook, “Bioethical Principles” by Nana Cecilie Halmsted Kongsholm dealing with feminist bioethics, attention needs to be paid to those involved and affected and their lived experiences. A queer feminist bioethics is not only about women but also has to do with the various concepts of gender involved.

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The historical development and acceptance of LGBTIQ* families and of queer and trans reproduction shows that lesbians gained as the first queer people access to ART who also were more accepted as mothers because of stereotypical gender expectations.29 For gay men it took longer to be considered as fathers, as the gender norms disadvantaged them. However, the genetic relationship after having a child with surrogacy helped them in legal issues, such as adoption, custody, and citizenship of the child.30 In the same article it is mentioned that in many countries (Australia, United Kingdom, Canada, New Zealand), where altruistic surrogacy is possible, gay men are also allowed to access surrogacy. However, in countries (Russia, Portugal, India) where both commercial and altruistic surrogacy is accessible, gay men are mostly excluded.31 Many gay men whose home countries do not allow the use of surrogacy and who can afford it, employ transnational surrogacy, but these men might face a “double ethical burden”32 and additional “ethical labour,”33 because of their minority stress and worries about the “marginalization of their kinship ties with their children” on the one hand, and on the other hand the queer and feminist critiques of exploitation of the surrogates and of adjustment to normative nuclear family forms.34 However, those queer and feminist critiques are center stage in the discussion around surrogacy with the following concepts: stratified reproduction, queer necropolitics, and reproductive justice.

Stratified Reproduction The notion “stratified reproduction” originated not in ethical issues about ART but in an anthropological study by Shellee Cohen about childcare workers in New York. These mostly female workers from the West Indies had to leave their own families in order to earn money through taking care of richer white families’ children in new York. Their salary supported their own family back in their home country.35 The editors of the anthology where Cohen’s chapter was published define the concept of stratified reproduction as “power relations by which some categories of people are empowered to nurture and reproduce, 264 

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while others are disempowered,” and the inequality is shown in that “some reproductive futures are valued while others are despised.”36 Taking our example of transnational surrogacy, especially if the surrogate is from the Global South and the intended parents are from the Global North, it is evident that the family from the Global North is empowered, and the surrogate’s reproductive wish had to stay behind. Furthermore, women in the Global South are often targeted for sterilization programs. Under the stratified reproduction lens, we see the economic imbalance, which leads many surrogates (were commercial surrogacy is allowed) to provide their reproductive resources in order to be able to sustain their own life or families. Stratification can be found in all ART procedures, which are not available on public health insurances or in one’s own country, as only those who are able to pay for it or have time and money to travel abroad have access to reproduction. The concept of stratified reproduction is the right tool for analyzing reproductive bioethical inequalities that are primarily based on class issues.

Queer Necropolitics The concept of necropolitics was developed by Achille Mbembe to describe a biopolitical process that results in some humans being constructed through racialization as less human than human. Therefore, their life can be subjugated to the power of death. Their life can be exploited and is superfluous as they have fewer rights than others.37 Jasbir Puar has pointed out how current neoliberal politics favor certain mostly white Western queer subjects, whereas other parts of the population do not have the same rights as those privileged queer persons.38 However, Puar’s analyses show that there was a big shift from the construction of queer people as figures of death during the AIDS crisis in the 1980s and 1990s to nowadays as subjects of life and reproduction, who are sometimes even preferred for reproduction to other humans. “We can complicate, for instance, the centrality of biopolitical reproductive biologism by expanding the terrain of who reproduces and what is reproduced, dislodging the

always already implicit heterosexual frame, interrogating how the production of identity categories such as gay, lesbian, and even queer work in the service of the management, reproduction, and regeneration of life rather than being predominantly understood as implicitly or explicitly targeted for death. Pressing Butler on her focus on how queers have been left to die, it is time to ask: How do queers reproduce life, and Which queers are folded into life? How do they give life? To what do they give life? How is life weighted, disciplined into subjecthood, narrated into population, and fostered for living? Does this securitization of queers entail deferred death or dying for others, and if so, for whom?”39 Thus, when it comes to queer reproduction, the concept of queer necropolitics are “instances where ‘queer vitalities become cannibalistic on the disposing and abandonment of others’40 and ‘when queer and trans politics are identified as parasitic,’ ”41 as the editors of the anthology with the same title explain. With this notion the context of a postcolonial world becomes more explicit. Michael Nebeling Peterson showed in his research on Danish gay men becoming fathers through surrogacy how these men are presented as vital and reproductive, whereas Indian surrogates are de-vitalized as being poor and emotionally more distanced.42 The colonial narrative is that those intended fathers wish to support Indian women financially in order to have more agency in their home country, India.43 Nebeling Peterson’s conclusion is that “through a necropolitical lens, we could say that the vitalization of the gay man by enrolling into the heteronormative imperative of reproduction rests upon a de-vitalization of racialized, classed, and gendered Others.”44 Through the framework of queer necropolitics we discover mainly postcolonial bioethical inequalities, which contain racifying and class aspects. In contrast to stratified reproduction, queer necropolitics points explicitly to processes where queer and trans rights are used as a trump card to overrule other (human) rights. This is similar to what Lisa Dive writes in her contribution to this handbook on autonomy. Dive argues that the choice of focused autonomy is not more important than other moral principles. With the

examples of queer necropolitics we see that another equally important principle (out of four principles) of biomedical ethics (as mentioned in the third and seventh contribution), non-maleficence, is not accomplished if other people are harmed. Therefore, Dive recommends that autonomous agents are held responsible for their choices and that the social context of the people involved should be attended to.

Reproductive Justice The third concept or theoretical framework, reproductive justice, which is at the same time an activist movement, was described in various ways by different branches of the activism. This is a comprehensive definition by Asian Communities for Reproductive Justice from 2005: reproductive justice “exists when all people have the social, political and economic power and resources to make healthy decisions about our gender, bodies and sexuality for ourselves, our families and our communities. Reproductive Justice aims to transform power inequities and create longterm systematic change, and relies on communities most impacted by reproductive oppression. The Reproductive Justice framework recognizes that all individuals are part of communities and that our strategies must lift up entire communities to support individuals.”45 The origin of this movement is found in a women of color’s reproductive health organization in the United States, such as the National Black Women’s Health Project in 1984, which responded to the claims of “reproductive choice” by white feminists with a concept that pointed out the “serious limits of choice” for certain women.46 The Reproductive Justice framework’s main focus is thus not only on gender but also on race.47 The most prominent organization within this movement is SisterSong, which was founded in the 1990s in Atlanta. They claim that the term Reproductive Justice was first used in 1994.48 With the theoretical framework of Reproductive Justice, it is easy to point out where intersectional inequalities and injustices lie. A Canadian brochure on Reproductive Justice explains further: “Underlying intersectional approach is an understanding of power and its unequal distribution along markers

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of differentiation (‘race,’ class, age, gender, sexual orientation, [dis]ability, etc.). To restore the balance of power, it is necessary to fight against oppression in all its forms (interpersonal, structural, systemic), and to recognise oppression/privilege and to actively deconstruct them in solidarity with others.”49 For queer and trans reproduction it is crucial to be aware of the possibility of queer necropolitics where an oppressed group is exploiting another discriminated group. This is described as the following in the same Canadian folder: “Reproductive Justice asks us to reconsider our understanding of power and oppression/privilege. An individual or group can be simultaneously in positions of power and of oppression depending on a particular context. Oppression is fluid and changeable, it operates at multiple levels and must be fought at all these levels.”50 The analytical tool of stratified reproduction is different as Smietana et al. explain, because stratified reproduction is focused primarily on the economy of a poor working class that needs to migrate to carry out reproductive or care work somewhere else for others. Displacement and power relations of elite and non-elite labor are the main characteristics of stratified reproduction, and transnational surrogacy and cross-border reproductive care are examples for the stratification of reproductive labor.51 Who from the elite can afford to access these ART procedures and who from the non-elite contributes with their reproductive labor or gametes? These would be the questions asked in order to analyze if stratified reproduction occurs in reproductive processes. Whereas Reproductive Justice “is more concerned with reproductive abjection, societal discrimination, and state institutions that use race as a technology to tear apart rather than support some kinds of families.”52 Examples of queer use of selective ART procedures are a gay couple who wants to have a surrogate of color for their white baby so that it is clear for the surrogate that there is no genetic connection. Another case is a mixed-race lesbian couple, which decides to have a white sperm donor to prevent the baby being subjected to even more discrimination. As the baby already has two mothers, they did not want to add another possibility (racism) for discrimination. On 266 

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the state level, ART can be used to “whiten”’ the nation (e.g., in Spain, white blond egg donors from Eastern Europe are preferred, the same in Israel; in Sweden, it is difficult to find sperm of donors of color, and Finland is the destination for Nordic white donor eggs with a guarantee of non-Russian eggs).53 Overall, the Reproductive Justice movement is a solidarity social justice activism movement aiming to transform society in general, so that every social group has equal access to reproductive information and reproduction as such and the same reproductive right. As cited in chapter 3 in this volume, in Tom Beauchamp and James Childress’ Principles of Biomedical Ethics54 (1979) four principles are mentioned, which are also crucial for Reproductive Justice. However, this chapter focuses on only two here for the example of queer and trans surrogacy, which are “justice (according to each person her due)” and “autonomy (self direction of one’s life).”55 What if we use the principle of autonomy for the surrogates (and not only for the intended parents) as well, as a form of justice for their reproductive labor? This is exactly what the Swedish National Council for Medical Ethics did in their 2016 report on “Different Paths to Parenthood,” as Jenny Gunnarsson Payne analyzed.56 The autonomy of the surrogates is the reason why this Council would allow surrogacy, because the surrogates have “the right to determine by themselves how they wish to live their lives.”57 However, the right of autonomy also includes, as the Governmental Investigator ruled, that the surrogates “must be able to change their mind once the child has been born.”58 So, the autonomy of the intended parents stands in conflict with the surrogate’s autonomy.59 Justice as “equal care on equal terms”60 does not solve the issue either. However, a feminist bioethical standpoint needs to include the surrogate’s autonomy. The same happens if we take the Reproductive Justice tool and look at who is in position of power (normally the intended parents) and the unequal distribution in this process. Gunnarsson Payne’s conclusion is therefore that kinship laws should be changed, especially if it comes to queer and trans families: more than two parents should be possible, for example, if a surrogate would still require shared custody.61

CO NCLUSION

N OT E S

Looking at the recommendations for queer and trans access to reproduction with ART more closely, we could see how complex the bioethical issues are with regard to providing more inclusive access to ART. With the concepts of stratified reproduction, queer necropolitics, and reproductive justice, we have analytical tools, and in the case of reproductive justice, also an activist tool to name and understand challenging, and even oppressive, power relations in these reproductive technologies. Allowing a certain group to gain access to reproduction does not mean to justify the oppression of another group during that reproductive process. This would be against the definition of a queer bioethics, which “places the ‘less powerful’ centre-stage; it challenges the status quo and the presumptive legitimacy of the normative. It employs powerful intellectual resources from neighbouring fields (Queer Theory, disability studies, medical humanities, and the history of medicine) and it challenges our complacency in the face of injustice and discrimination in medical encounters, systems, and policies.”62 In order to create just bioethical discussions about ART, we need to take many perspectives into account and include diverse experiences from the participants in these procedures, not only intended parents but also reproductive workers. In that way we can make sure to be inclusive, but not at the cost of others. Or as Donna Haraway said, “Single vision produces worse illusions than double vision or many-headed monsters.”63 Sarah Franklin came to the conclusion after analyzing recent bioethical decision-making in the United Kingdom that, among others, “social justice” and “inclusive participation” became crucial. The outcome relied on less ethical experts, but more on “collective participation” and “feedback” during the entire process, thus the “diversity of representation” is most decisive.64 “The implication of this new model is that the most ethical science is the most sociable one, and thus that scientific excellence depends on greater inclusivity.”65

1.  Stephen Whittle,, “Foreword,” in Transgender Studies Reader, eds. Susan Stryker and Stephen Whittle (New York: Routledge, 2006), xi–xvi. 2.  James B. Tubbs, A Handbook of Bioethics Terms (Washington, DC: Georgetown University Press, 2009). 3.  Centers for Disease Control and Prevention, National Center for Chronic Disease Prevention and Health Promotion, and Division of Reproductive Health, “What Is Assisted Reproductive Technology?,” November 9, 2020, https://www.cdc.gov/art/whatis.html, date last accessed November 18, 2021. 4. Tubbs, A Handbook of Bioethics Terms, 11–12. 5. Kate Hampshire and Bob Simpson, eds., Assisted Reproductive Technologies in the Third Phase: Global Encounters and Emerging Moral World (New York: Berghahn Books, 2015). 6.  Hampshire and Simpson, Assisted Reproductive Technologies in the Third Phase, 2–3. 7.  Hampshire and Simpson, Assisted Reproductive Technologies in the Third Phase, 3. 8.  Anika König and Heather Jacobson, “Reprowebs: A Conceptual Approach to Elasticity and Change in the Global Assisted Reproduction Industry,” BioSocieties (October 9, 2021): 3, 6, https://doi.org/10.1057/s41292-021-00260-6. 9.  König and Jacobson, “Reprowebs,” 7. 10.  Victoria Boydell and Katharine Dow, “Adjusting the Analytical Aperture: Propositions for an Integrated Approach to the Social Study of Reproductive Technologies,” BioSocieties (August 19, 2021), https://doi.org /10.1057/s41292-021-00240-w. 11.  Boydell and Dow, “Adjusting the Analytical Aperture.” 12.  König and Jacobson, “Reprowebs.” 13.  König and Jacobson, “Reprowebs.” 14.  Boydell and Dow, “Adjusting the Analytical Aperture.” 15.  Boydell and Dow, “Adjusting the Analytical Aperture”; Natali Valdez and Daisy Deomampo, “Centering Race and Racism in Reproduction,” Medical Anthropology 38, no. 7 (October 3, 2019): 551–59. 16.  Charis Thompson, “Move beyond Differences,” Nature 522 (June 25, 2015): 415. 17.  Ulrika Dahl, “Not Gay as in Happy, but Queer as in Fuck You,” Lambda Nordica 3–4, (2014): 143–68. 18.  Studies such as presented in: S. James-Abra et al., “Trans People’s Experiences with Assisted Reproduction Services: A Qualitative Study,” Human Reproduction 30, no. 6 (2015): 1365–74; Doris Leibetseder, “Queer and Trans Access to Assisted Reproductive Technologies: A Comparison of Three EU-States, Poland, Spain and Sweden,” Journal of International Women’s Studies 20, no. 1 (December 10, 2018): 10–26.

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19.  Horizon 2020, MSCA, Grant Agreement 749218. 20.  https://www.gender.uu.se/forskning/qtreproart/, date last accessed November 18, 2021. 21.  European Commission, “Trainers’ Manual. Reducing Health Inequalities Experienced by LGBTI People. What Is Your Role as a Health Professional?,” January 2018, https:// ec.europa.eu/health/sites/health/files/social_determinants/docs/2018_lgbti_trainersmanual_en.pdf, date last accessed August 11, 2018. 22.  Clare Bartholomaeus and Damien W. Riggs, “Transgender and Non-Binary Australians’ Experiences with Healthcare Professionals in Relation to Fertility Preservation,” Culture, Health & Sexuality (March 18, 2019): 1–17; Diane Chen et al., “Attitudes toward Fertility and Reproductive Health among Transgender and Gender-Nonconforming Adolescents,” Journal of Adolescent Health 1 (2017): 62–68; Rachel Epstein, “Space Invaders: Queer and Trans Bodies in Fertility Clinics,” Sexualities 21, no. 7 (2018): 1039–58; Jenny Gunnarson Payne and Theo Erbenius, “Conceptions of Transgender Parenthood in Fertility Care and Family Planning in Sweden: From Reproductive Rights to Concrete Practices,” Anthropology & Medicine 25, no. 3 (2018): 329–43; James-Abra et al., “Trans People’s Experiences”; Lori E. Ross et al., “Sexual and Gender Minority Peoples’ Recommendations for Assisted Human Reproduction Services,” Journal of Obstetrics and Gynaecology Canada 2 (2014): 146–53. 23.  Chen, “Attitudes toward Fertility.” 24.  G. Armuand et al., “Transgender Men’s Experiences of Fertility Preservation: A Qualitative Study,” Human Reproduction 2 (2017): 383–90. 25.  Lori E. Ross et al., “Lesbian and Bisexual Women’s Recommendations for Improving the Provision of Assisted Reproductive Technology Services,” Fertility and Sterility 3 (2006): 735–38. 26.  Ross et al., “Sexual and Gender Minority Peoples’ Recommendations.” 27. Bartholomaeus and Riggs, “Transgender and NonBinary Australians’ Experiences”; Epstein, “Space Invaders”; Gunnarson and Erbenius, “Conceptions of Transgender Parenthood”; James-Abra et al., “Trans People’s Experiences.” 28. Josh Milton, “Lesbian Couple Sue NHS over IVF Discrimination in Landmark Case,” PinkNews (November 8, 2021), https://www.pinknews.co.uk/2021/11/08 /nhs-ivf-lesbian-fertility-megan-whitney-bacon-evans/, date last accessed November 13, 2021. 29. Marcin Smietana, Charis Thompson, and France Winddance Twine, “Making and Breaking Families—Reading Queer Reproductions, Stratified Reproduction and Reproductive Justice Together,” Reproductive Biomedicine & Society Online 7 (November 2018): 112–30, esp. 114. 30. Ibid. 31. Ibid.

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32.  Joshua Gamson and Melissa Harris-Perry, Modern Families: Stories of Extraordinary Journeys to Kinship (New York: New York University Press, 2015). 33.  Katharine Dow, Making a Good Life: An Ethnography of Nature, Ethics, and Reproduction, (Princeton, NJ: Princeton University Press, 2016). 34.  Smietana et al., “Making and Breaking Families.” 35.  Shellee Colen, “‘Like a Mother to Them.’ Stratified Reproduction and West Indian Childcare Workers and Employers in New York,” in Conceiving the New World Order: The Global Politics of Reproduction, eds. Faye D. Ginsburg and Rayna Rapp (Berkeley: University of California Press, 1995): 78–102; Smietana et al., “Making and Breaking Families,” 117. 36.  Faye D. Ginsburg and Rayna Rapp, Conceiving the New World Order: The Global Politics of Reproduction (Berkeley: University of California Press, 1995), 3. 37. Achille Mbembe, “Necropolitics,” Public Culture 15, no. 1 (2003): 11–40. 38. Jasbir K. Puar, Terrorist Assemblages: Homonationalism in Queer Times (Durham, NC: Duke University Press, 2007); and Silvia Posocco, “On the Queer Necropolitics of Transnational Adoption in Guatemala,” in Queer Necropolitics, eds. Jin Haritaworn, Adi Kuntsman, and Silvia Posocco (Abingdon/New York: Routledge, 2014), 72–89. 39. Puar, Terrorist Assemblages, 35 f. 40.  Jin Haritaworn, Adi Kuntsman, and Silvia Posocco, Queer Necropolitics (Abingdon/New York: Routledge, 2014), XVI and 2. 41.  Haritaworn et al., “Queer Necropolitics,” XVI. 42. Michael Nebeling Petersen, “Between Precarity and Privilege: Claiming Motherhood as Gay Fathers through Transnational Surrogacy,” in (In)Fertile Citizens: Anthropological and Legal Challenges of Assisted Reproduction Technologies, eds. V. Kantsa et al. (Athens: Alexandria Publications, 2015), 93–100, esp. 97; K. Vora, “Limits of ‘Labor’: Accounting for Affect and the Biological in Transnational Surrogacy and Service Work,” South Atlantic Quarterly 111 (2012): 681–700. 43. Ibid.; Nebeling Petersen, “Between Precarity and Privilege.” 44.  Ibid., 100. 45.  Asian Communities for Reproductive Justice, A New Vision for Advancing Our Movement for Reproductive Health, Reproductive Rights and Reproductive Justice (Oakland, CA: ACRJ, 2005), 4, https://forwardtogether.org/tools/a-new -vision/, date last accessed November 17, 2021. 46. Loretta J. Ross and Rickie Solinger, Reproductive Justice: An Introduction (Oakland: University of California Press, 2017), 54. 47.  Nancy Ehrenreich, ed., The Reproductive Rights Reader: Law Medicine, and the Construction of Motherhood (New York: New York University Press, 2008); Dorothy Roberts, Killing the Black Body: Race, Reproduction and the Meaning of Liberty (New York: Pantheon Books, 1997); Jael Silliman et al.,

Undivided Rights: Women of Color Organize for Reproductive Justice (Cambridge: South End Press, 2004). 48.  SisterSong, https://www.sistersong.net/reproduc tive-justice, date last accessed November 17, 2021. 49.  Fédération du Québec pour le planning des naissances, Reproductive Justice, or Applying a Social Justice Lens to Sexual, Reproductive and Maternal Health and Rights (March 2014): 11. 50. Ibid. 51.  Smietana et al., “Making and Breaking Families,” 117. 52.  Smietana et al., “Making and Breaking Families,” 117. 53. Riikka Homanen, “Reproducing Whiteness and Enacting Kin in the Nordic Context of Transnational Egg Donation: Matching Donors with Cross-Border Traveller Recipients in Finland,” Social Science & Medicine 203 (April 2018): 28–34. 54. Tom Beauchamp and James Childress, Principles of Biomedical Ethics (New York: Oxford University Press, 2009). 55.  John D. Arras, Methods in Bioethics: The Way We Reason Now, eds. James Childress and Matthew Adams (New York: Oxford University Press, 2017), 5.

56.  Jenny Gunnarsson Payne, “Autonomy in Altruistic Surrogacy, Conflicting Kinship Grammars and Intentional Multilineal Kinship,” Reproductive Biomedicine & Society Online 7 (2018): 66–75. 57.  Ibid., 67. 58.  Ibid., 68. 59.  Compare ibid., 71. 60.  Compare ibid., 70. 61.  Compare ibid., 74. 62.  Lance Wahlert and Autumn Fiester, “Queer Bioethics: Why Its Time Has Come,” Bioethics 26 (January 2012): ii–iv. 63. Donna Haraway, “A Cyborg Manifesto: Science, Technology, and Socialist-Feminism in the Late Twentieth Century,” in Simians, Cyborgs and Women: The Reinvention of Nature (New York: Routledge, 1991), 149–81, esp. 154. 64. Sarah Franklin, “Ethical Research—The Long and Bumpy Road from Shirked to Shared,” Nature 574, no. 7780 (October 2019): 627–30. 65. Ibid.

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CHAPTER 25

Population Governance Karin Kuhlemann

F

or the majority of human history it has been very difficult for sexually active people of reproductive age to avoid procreation. The habit of thought remains even today: babies just happen. Nevertheless, the advent of reliable and inexpensive modern contraception has brought human procreation substantially within the realm of moral and normative agency. Given its inherent other-affecting nature, procreation should be uncontroversially regarded as a legitimate subject of policy attention. This chapter focuses on the normative questions and disagreement relating to anti-natalist population policies.1 Anti-natalist population policies are state interventions and programs seeking to induce changes in attitudes and behaviors so as to reduce fertility rates and mitigate or reverse unsustainable population growth. First, a clarification. References in this chapter to “anti-natalist” policies, interventions, or aims are not intended as relating to the philosophical position known as anti-natalism. As proposed by David Benatar in 2006, anti-natalism takes the view that procreation is always wrongful because existence involves the imposition of severe, inevitable harms upon the person created. In the discussion that follows, references to anti-natalist policies are intended as describing the counterpoint to pro-natalist population policies.

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By way of a typology, anti-natalist population policies may feature one or more of the following components: I.

Policies enabling individuals to control their fertility

a. provision of family planning services, including as a minimum advice on and dispensing of modern contraceptives such as the oral contraceptive pill, contraceptive injections, intrauterine devices, and male and female condoms, but potentially also abortion services and advice on and provision of permanent contraception methods (i.e., vasectomies and tubal ligations); b. proactive education and outreach about modern contraceptive methods and other elements of family planning and sexual and reproductive health care;

II. Social policies capable of anti-natalist effects2

c. improved access to primary health care services and advice, in particular, on maternity and infant care; d. the introduction and provision of state-run old age pension schemes and related social safety nets for illness and disability; e. human capital formation measures focused on women and children, for example, laws requiring parents to keep their children in school, bans on child marriage and child

labor, increased public spend on girls’ education, and skills training and business finance for women; f. what we might call anti-patriarchy measures, for example, laws repealing gender-discriminatory inheritance and divorce customs, bans on child marriage, statutes criminalizing female genital mutilation, marital rape, and bride kidnapping, public messaging campaigns aimed at tackling misogynistic attitudes, and public policies promoting greater involvement of fathers in childcare; III. Anti-natalist interventions

g. public messaging campaigns endorsing, promoting, or normalizing procreative restraint, for example by highlighting the benefits of small families to parents and children, or of using modern contraceptives to space births and to prevent unplanned pregnancies; h. financial or other positive incentives encouraging smaller families or contraceptive uptake, for example, tax rebates for workers who are childless or have only one child, or cash grants rewarding the use of contraception; i. financial or other negative incentives discouraging larger families (e.g., rules making parents of larger families ineligible for certain welfare payments); and j. compelled family planning (e.g., a legal requirement on individuals to use contraception to avoid unplanned pregnancies, or to limit family size).

Pro-natalist population policies follow a similar typology as for anti-natalist policies, but to opposite ends, namely to encourage larger family sizes. Modern examples include laws, policies, and resource allocation decisions that hinder access to contraception and abortion, or that perpetuate gender-based inequalities, in particular, those that make it harder for women to compete in the job market. It should be noted that pro-natalist laws, policies, and resource allocation decisions are usually not seen as population policies, and their potential pro-natalist

effects are generally not acknowledged. In contrast, policy interventions promoting larger families and offering “baby bonuses” and similar financial incentives for procreation are usually positioned explicitly as pro-natalist population policies looking to address the perceived threats of population aging and degrowth. Such pro-natalist interventions are usually uncontroversial, or at any rate, unlikely to face any serious criticism that they are (say) unfair or disrespectful toward those who would prefer to have no children, or no more children. Their mirror opposite—anti-natalist financial incentives—are, however, intensely controversial. As a matter of fact, all anti-natalist interventions are commonly vilified as tyrannical and illegitimate. In understanding why this is so, one needs to consider what is different about anti-natalist interventions relative to other types of anti-natalist population policy, and indeed pro-natalist population policies. The provision of basic family planning is a fundamental component of any credible anti-natalist policy, and indeed an important element of primary health care. Access to modern, reliable, and safe contraceptives is a necessity for any sexually active individual of reproductive age wishing to avoid, limit, or postpone procreation. In many contexts, in particular, where average levels of educational attainment are low, or where women face practical or cultural restrictions on their mobility, many more people are likely to benefit from family planning services if the policy also includes family planning education and outreach efforts. These can, for example, help dispel common fears about modern contraceptives, which in high-fertility societies may currently pose a greater obstacle to addressing unmet need than lack of access.3 However, while essential to enabling individuals to control their own fertility, family planning provision and outreach-type policies are not geared toward promoting procreative restraint or otherwise generating demand for family planning. Demographers have long understood that mere access to and knowledge about modern contraceptive methods are likely to have only modest effects on fertility rates where individuals and couples simply prefer having a large number of children,4 or hold fatalistic attitudes toward procreation.5 P op u lation Gove r nance 

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These preferences and attitudes are common in societal settings with persistent high fertility. The social policies of the kinds characterized in (c), (d), (e), and (f) are commonly raised in the context of contemporary development discussions as representing a supposedly optimally efficient, or perhaps the only morally permissible, way to promote demand for contraceptives and bring about declines in fertility rates. Such policies, though not anti-natalist in themselves, are generally believed to have antinatalist effects. Greater access to primary health care tends to reduce neonatal and infant mortality, which is theorized to reduce fertility rates by suppressing precautionary demand for children. The introduction of public pension systems is thought to discourage the old-age security motive for procreation. Human capital formation measures, if successful and given a reasonably propitious economic context, can lower fertility rates by making women’s time more economically valuable, or by requiring greater parental investment into and reducing the instrumental utility of offspring. The upshot is the same: children become more expensive, and the option of limiting family size becomes more attractive to the parents. Additionally, the blunt mechanism of keeping girls unmarried and in school is also likely to reduce their vulnerability to early, frequent, and unhealthy childbearing, which is so often the lot of disempowered and abused child brides. Finally, anti-patriarchy measures can be reasonably expected to have some anti-natalist effects, potentially by attenuating son preference, or helping women have more of a say on family size decisions that might otherwise be made by husbands or in-laws. But perhaps most importantly, anti-patriarchy measures can be essential to enable the success of human capital formation measures, with which they are closely related and partially overlap. Bans on child marriage, for example, fall into both categories. The evidence for anti-natalist effectiveness of social policies is rather more complicated and mixed than standardly assumed in development discourse. Their indirect effects on procreative attitudes and behaviors are heterogeneous and highly dependent on the specific societal context. Different levels of cultural pronatalism and religiosity, for example, 272 

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can mean seemingly identical social measures have very different fertility outcomes. In some contexts the effect on fertility rates may be undetectable, or positive6 instead of negative. And a negative effect may simply be too modest or uncertain7 to be relied upon to address the pressing concerns relating to high fertility rates.8 Even where a substantial decline in fertility rates is observed, it is difficult to establish the direction of causation. This is at least in part due to fertility itself being a factor in the success or failure of social policies. It is much more feasible to expand primary and secondary education, and to do so without sacrificing quality, for smaller rather than larger cohorts of school-age children.9 It is harder to bring about changes in social practices to build children’s human capital and protect them from exploitation and harm where children are cheap, plentiful, and perceived as replaceable.10 Women and young people struggle to get any benefit from skills training and added years of education where they are trying to compete in labor markets already saturated with job-seekers.11 The sustainability and trustworthiness of public pension systems, and of public welfare systems more generally, will similarly suffer where there is labor over-supply and high levels of unemployment and informal employment.12 It is harder to change traditional misogynistic attitudes where women are prevented from more active participation in public and economic life by the constant bearing and rearing of children. And smaller family sizes seem to lead not only to better infant survival13 but to more educated,14 better fed,15 and more intelligent16 children who go on to enjoy greater incomes17 in adulthood, inverting the traditionally assumed direction of causation between fertility and child mortality, education, and affluence. Of course, these kinds of social policies are justified quite independently of whether they can be shown to cause any reduction in fertility rates. But insofar as they are to be regarded as central components of anti-natalist population policies, effectiveness is a very relevant consideration.18 I mean here merely whether they work, not whether they are cost-effective. Social policies involving substantial greater public expenditure in primary health care; social insurance; and raising levels of education,

skills, and economic participation are expensive ways of achieving reductions in fertility rates, if that were the rationale for their implementation. Antipatriarchy measures are not comparably expensive but are unlikely to deliver substantial anti-natalist effects in and of themselves. Seeking to induce people to have fewer children via the implementation of social policies is arguably akin to seeking to reduce the rate of drunk-driving by expanding mental health services, or offering more generous unemployment benefits but without explicitly disapproving of or seeking to directly deter the behavior. This kind of social policy may well indirectly reduce drunk-driving. But the reduction would almost certainly be smaller, and achieved at a much greater cost to the public purse, than that achievable via the direct interventions normally pursued to tackle drunkdriving, such as public messaging on the dangers of impaired driving and the existence, awareness, and enforcement of laws proscribing and penalizing the behavior. Cost-effectiveness is particularly important where public resources are scarcest. The countries where fertility rates and population growth remain high include the poorest countries in the world. We now turn to anti-natalist interventions, the direct-acting, targeted policies characterized in (g)–(j) earlier. Since the mid-1990s, anti-natalist interventions have been standardly assumed in public debate and policy-making circles to be ethically impermissible and therefore not worth considering at all. To the extent the development discourse evinces any awareness of past and existing examples of anti-natalist public messaging campaigns, these are likely to be regarded with at best distaste, at worst accusations that it is improper for the state to have any interest at all in the family size decisions of individuals—though pro-natalist messaging generally faces no such objection. Anti-natalist incentives and disincentives, and certainly compelled family planning, are routinely decried as ill-intentioned, or incompatible with respect for fundamental rights. Anti-natalist interventions do interact with personal liberties, but so do countless policy interventions: What, then, might explain the strength of feeling about anti-natalist interventions?

What is distinctive about such interventions is not, as often assumed, that they are coercive. To be clear, anti-natalist interventions do involve degrees of coercion, ranging from the prospect of social pressure created by anti-natalist public messaging, to potential economic coercion in the form of incentives and disincentives, to actual regulation of procreative behavior via compelled family planning. Antinatalist interventions are not distinguishable by featuring coercion because the much-loved social policies with indirect effects include clearly coercive measures as well, including bans on practices once assumed (and in many places, still assumed) to be within the individual rights of men or of parents, or within the cultural or religious rights of certain communities. Pro-natalist interventions like baby bonuses are also capable of placing economic pressure on procreative decisions. And traditional pronatalist messaging by kin and by religious leaders (for example) is certainly capable of at least comparable social pressure to anti-natalist public messaging. The more important point, however, is that there is nothing per se illegitimate or necessarily disproportionate about the state coercively intervening in relation to individual conduct. After all, all law is coercive. Any state-imposed limitation to our freedoms and to the practical options open to us needs to be adequately justified, reasonably well thought out, and fairly and appropriately implemented. But life in society would be impossible without limitations on individual freedoms to prevent people from acting in ways likely to cause, contribute to, or risk a serious setback to the interests of others or to the common good. This is the essence of the harm principle, the classical ground of justification for state coercion. The harm may not be intended, the causative conduct may not be per se reprehensible, and the persons who would be affected need not be identifiable; none of these criteria rule out the legitimate (if often unpopular) exercise by the state of its coercive power on harm-prevention grounds. Harm-preventing limitations on liberty are commonplace and imposed, for example, via public health mandates, traffic laws, interventions by social services, the enactment of licensing and regulations by environmental agencies, planning authorities, and bodies regulating industries P op u lation Gove r nance 

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and professions, and perhaps most obviously via the imposition of liability under civil or criminal law. So if it is not coercion per se, what makes anti-natalist interventions so controversial? I suggest the ultimate reason is that the rationale and justification for anti-natalist interventions in the population policy context is centered on harm caused by human overpopulation. That is to say, anti-natalist interventions involve some degree of problematization of procreation and unsustainable population growth. In contrast, family planning provision and social policies capable of anti-natalist effects are independently justifiable with reference to other worthwhile aims. Explicitly, pro-natalist policies, in turn, far from problematizing population growth, promote it as a social good to which individuals are invited to contribute by having more children.

Objections to Anti-natalist Inter ventions Three main lines of reasoning, often engaged in combination, can be identified in arguments opposing policy efforts to tackle unsustainable population growth. The first is population denial.19 Implicitly, this viewpoint argues that the harm principle is not engaged because there is no real harm meriting prevention, mitigation, or remediation. In its more brazen and speculative versions, population denial involves the claim that human overpopulation is impossible on various utopian grounds, for example, due to boundless human inventiveness, infinite resource substitutability, or the supposed inevitability of humanity’s profitable colonization of outer space. In more circumspect versions, it is suggested that overpopulation must not be happening yet, as we do not appear to be on the verge of global apocalypse. On the contrary, the thinking goes, though environmental problems may lead to some loss of amenity or cause wildlife to suffer, humanity is doing rather well. Most people’s standards of living are the highest they have ever been, and our global population’s massively enlarged food demands are being comfortably met at this time. We should therefore wait and see, is the typical argument; it would be inappropriate to consider anything as intrusive or “extreme” as an anti-natalist intervention 274 

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until we are in real trouble. Virtually all objections to anti-natalist population intervention involve an element of population denial, most notably with regard to socio-economic problems such as increasingly precarious employment; rising living costs; stagnant or reduced wages; and worsening trends on social inequality, migration, and displacement. The second line of reasoning is population deflection or diversion.20 It involves acknowledging, often quite forcefully, the severity and multiplicity of environmental damage caused by human pressures on natural resources and ecosystems. Current and growing negative impacts on humanity, in particular, on the world’s poor, are emphasized. A population deflector will typically be keen to highlight the urgency of acting to mitigate climate change, mass extinctions, freshwater depletion, or some other anthropogenic creeping catastrophe. But where the population denialist will deny there is harm, the deflector will deny that human overpopulation is its cause. This line of reasoning characteristically argues that our environmental problems have nothing to do, or too little to do, with human population growth. The argument goes, we should prioritize tackling the inequitable features of socio-economic arrangements, because the environmental damage we are concerned about—whatever it may be—is principally or solely caused by unjust, wasteful, or otherwise reprehensible consumption by a relatively small sub-set of the global population. The third line of reasoning in objections to anti-natalist interventions might be characterized as moralized indifference to harms arising from overpopulation, or in any case, from procreation. From an ethical and philosophical perspective, this is the most interesting line of objection. Population denial and population deflection ultimately dispute the reality and causation of harm severe enough to justify interferences with people’s liberties. These lines of reasoning are liable to rebuttal via open and honest engagement with empirical evidence. But moralized indifference is rather more impervious to facts. The standard argument here is that it does not matter how serious a problem overpopulation may be, because each of us has a virtually absolute right to procreate,

and this rules out anti-natalist interventions. So however concerned we may be about overpopulation, we must limit our efforts to boosting family planning provision and pursuing social measures capable of anti-natalist effects, and hope this is enough. In the following sections I briefly summarize the body of empirical evidence that rebuts the population denial position, then turn to the misleading assumptions about consumption underlying population deflection arguments. Lastly, I briefly summarize the mistakes in ethical reasoning underlying moralized indifference to harms from overpopulation.

TH E CURRE NT T R A JE C TO RY O F H UMAN POP U L AT I O N G R OW T H From around the early 1990s until relatively recently, population discourse has assumed that our global numbers would peak at 9 or 10 billion people around 2050, and that this further population growth, while presenting serious challenges for food security and for the health of key ecosystems worldwide, would be manageable overall. The year 2050 happened to be the time horizon of the standard biennial UN population projections issued up to 2010. From 2012 onward, UN projections started running to 2100. Though the estimates oscillate from one biennial revision to another, these projections show the global population in the year 2100 at around 11 billion, give or take a few hundred million people, and still growing as we enter the twenty-second century (see Figure 25.1). These estimates were received by the mainstream press as an alarming surprise. However, they accord with population projections going as far back as the 1970s and closely resemble longrange projections from the UN and the World Bank published in the early 1990s, then quietly shelved as the population taboo hardened.21 That is to say, the overall trendline, of a still growing22 global population of around 11 billion in 2100, seems to have remained fairly stable over at least thirty years of modeling and reporting. There seems to be a substantial disconnect between demographic observations and the public and policy discourse on demographic trends.

This disconnect goes beyond the mirage of a midtwenty-first-century population peak. The number of people added to our global numbers every year has not changed much since the late 1970s, at around 80 million. As the overall population has about doubled since then, this absolute annual increase translates into an ever-smaller rate of population growth relative to an ever-larger total. Commentators commonly interpret this to mean that population growth is therefore not a problem, or no longer a problem. But the sustainability of our numbers has little to do with how rapidly they change, and everything to do with how far, and for how long, our aggregate demands overshoot the regenerative capacity of the resources on which we depend. By way of analogy, no one would reasonably suppose that overfished North Atlantic cod stocks could be preserved or restored by slowing down the growth in capacity of the fishing fleet plying those waters, or by reducing the rate at which cod catches increase. A further source of confusion arises from widespread misreadings of UN projections, in particular, with regard to the nature of the medium variant projection. It is often supposed that the medium variant represents a “business as usual” extrapolation of the current population trajectory into the future, assuming fertility rates remain broadly unchanged relative to today’s. Under this mistaken understanding, the low variant projection would represent a possible future where people have, on average, fewer children than today, whereas the high variant would represent a future where people on average have more children than they tend to do now. In the 2019 UN projections, which are the most recent at the time of writing, the high variant illustrates a 2100 population of near 16 billion, whereas the low variant shows a population close to 7 billion (see Figure 25.2). As with the medium variant, these figures change a little from revision to revision and are sometimes a bit lower, sometimes a bit higher. In reality, however, the medium projection is not a “business as usual” extrapolation from current fertility rates. Instead, the medium variant assumes substantial reductions in future fertility rates relative to today’s levels.23 P op u lation Gove r nance 

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FIGURE 25.1.  UN Population projections, 2019 revision. Solid line represents the “medium” variant, upper dashed line represents the “high” variant, lower dashed line represents the “low” variant. The UN does also produce a constant fertility variant as part of its revisions, typically buried deep in its more detailed publications accompanying each revision. The constant fertility variant makes broadly the same assumptions about the future as the medium variant, except that it assumes no change in patterns of family formation. That is, it assumes that in future people will continue having as many children, on average, as they do now. In doing so, the constant fertility variant illustrates a dramatically different trajectory from that of the medium variant. Whereas the medium variant estimates a population of around 11 billion by 2100, the constant fertility variant yields a global population in 2100 of over 20 billion.24 This is much higher than even the high variant, which assumes family sizes remain, on average, half a child larger than what is assumed in the medium variant (the low variant does the opposite).25 276 

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The true position, then, is that the high, medium, and low variants all assume future total fertility rates26 that are substantially lower than today’s rates. How confident are these assumptions about the future? In short, UN demographers have reasonable confidence that some degree of further reductions in fertility will take place, but are much less confident on the extent and timing of these reductions, in particular, in the areas of the world where it matters most. There are currently two major elements to population growth. One is demographic momentum, the baked-in growth caused by past high fertility rates creating large cohorts of young people who have not yet had any children. These young cohorts can be confidently expected to generate further population growth over the medium term. The only way to avoid this is for these large cohorts of young

FIGURE 25.2.  UN Population projections, 2019 revision, including the constant fertility variant. people to have so few children that their fertility rate is matched, or outpaced, by mortality. This is a tall order, given that mortality concentrates in older cohorts, which are typically much smaller in countries that have undergone rapid population growth over the last several decades. After all, human reproduction is not like the salmon run, where parents die promptly after creating the next generation. Under normal circumstances parents coexist with

their children for several decades. Babies replace not their parents but people of their grandparents’ or great-grandparents’ generation. The global cohort of under-fifteens is currently about twice as large as the cohort of people aged over sixty; in Africa, children under fifteen outnumber people over sixty nearly seven-fold. Population momentum explains how countries such as China and Iran, where fertility rates have fallen to and remained at P op u lation Gove r nance 

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sub-replacement fertility levels for decades, have yet to stop growing, let alone start population deflation (which in the case of Iran, is a prospect being fought by increasingly extreme pro-natalist policies). Some two-thirds of population growth up to the middle of this century is due to momentum, reducing the scope for what growth avoidance can be achieved by anti-natalist population policies over the next few decades. Population momentum is also the reason why anti-natalist interventions are most effective when planned and implemented decades before some anticipated crisis point. It is simply not possible to address unsustainable population growth in a dynamic, “just-in-time” fashion as we realize (for example) that production of food or fuel is starting to fall short. The other element of population growth is the relatively modest number of countries, mostly very poor, where pronatalist cultures and attitudes remain strong and fertility rates remain high. These remaining pockets of high fertility are the primary drivers of global population growth over the longer term. If fertility rates there drop just a little slower than assumed by UN projections, the global population at 2100 would reach a figure closer to the upper bound of the prediction interval of the medium variant, at 12.7 billion. Falls in the fertility rates in many of these countries have all but stalled. This remains the aspect of greatest uncertainty for UN projections. Simply put, fertility rates there may stay high. There is nothing inevitable about a decline in fertility; it does not just happen with the passage of time. In 1973 demographer Ansley Coale articulated three basic conditions for sustained reductions in fertility rates. Briefly: 1. Children must be within the calculus of conscious choice (e.g., as opposed to left to God or fate to decide); 2. Means of fertility control must be available (essentially, there must be access to reliable contraception); and 3. Controlling fertility must be perceived by couples and individuals as something that it is in their interests to do.27 278 

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These three preconditions falter, to varying degrees, in places such as Niger, Somalia, the Democratic Republic of Congo, South Sudan, Angola, Iraq, Afghanistan, or Papua New Guinea, where fatalistic attitudes toward family size often prevail, family planning services may be difficult to access or poorly accepted, and having a large number of children is commonly seen as a reliable way of enhancing one’s social status and of securing support in old age. The result is families trapped in cycles of poverty, with low investment in numerous children who go on to struggle with ever more thinly stretched familial and community resources such as agricultural land, water, schools, and decent jobs. Many of those children may feel compelled to migrate as young adults in search of economic opportunities, facing an increasingly hostile reception in destination countries. If those children are girls, they face a high risk of ending up trapped in child marriage, perhaps the most prevalent form of slavery in the modern world. As noted earlier in this chapter, public discourse on population often assumes that, to the extent that some countries have a problem with high birth rates, it is solvable by greater investment in family services provision and in social policies that are merely capable of anti-natalist effects. Let us consider two examples that I suggest show the mistake of ignoring and failing to counteract cultural pronatalism. Niger currently has the highest total fertility rate in the world, at nearly seven children per woman on average. Fertility rates in neighboring Chad are similarly high, at just under six children per woman. These impoverished Sahel countries with rapidly expanding populations have long struggled with desertification due to degradation of fragile soils, deforestation, overgrazing, and freshwater depletion. Global warming is exacerbating these pre-existing problems. In both countries, only a small share of land area is arable—11 percent in Niger, and only 4 percent in Chad. In common with other Sahel countries, food production has not matched population growth, and rural families are routinely malnourished. Chad and Niger register the world’s highest rates of child marriage. The majority of Nigerien and Chadian children aged five to fourteen are engaged in child labor, including

commercial sexual exploitation and forced labor in domestic work and herding cattle in Chad, and hereditary slavery and mining in Niger. Chad and Niger are each estimated to have had a population of only around 2.5 million in 1950. Chad’s population is now 16 million, and in 2100 it is predicted to reach 61 million. Niger’s is now 24 million, estimated to reach 164 million by 2100. By that time, vast portions of the Sahel may have become altogether uninhabitable due to desertification and global warming. Surveys of people in Niger and Chad have consistently found a desire for very large families of more than eight children. So on average, couples there are having fewer children than they would prefer.28 Simply improving access to and even education about family planning is unlikely to significantly lower fertility rates in Chad or Niger, as couples there are not looking to limit their families. And pursuing social measures would be an expensive, slow, and far too uncertain strategy for shifting procreative preferences toward small families in a context of increasingly urgent threats to food security. The need for procreative restraint, if anything to prevent serious and foreseeable harm to persons who would be brought into being in wholly adverse circumstances, tends to be starkest exactly where demand for family planning is weakest—whether due to pronatalist attitudes, to poverty-induced apathy and fatalism, or both.

AL RE ADY UNSU STA I NA B L E Those that cannot in good conscience deny human overpopulation tend to avoid the topic altogether, afraid of the condemnation frequently directed at those willing to broach it.29 Nevertheless, the evidence of disastrous environmental strain caused by human population growth is becoming ever harder to ignore. Since 2014, the Intergovernmental Panel on Climate Change (IPCC) has acknowledged that greenhouse gas emission, and by extension climate change, is primarily driven by population growth and economic growth. Economic growth is standardly and not unreasonably assumed to be necessary to prevent

impoverishment in the face of population growth. Unreasonably, the permanent pursuit of economic growth is also assumed to be a valid goal in a bid to promote infinite improvements in affluence and living standards. Population growth, in turn, is standardly welcomed as supporting economic growth. It is difficult to see how greenhouse gas emissions can be sufficiently abated without a very significant contraction in the size of the global economy. There is simply no evidence that economic growth can be decoupled from carbon emissions or other environmental impacts.30 While it is conceivable that technological measures such as energy efficiency, renewable energy sources, and some sort of mass carbon capture and storage may yet succeed in making it possible for any country’s economy to be fully decarbonized, as of yet, the technological solutions do not exist. Even if they were to become available in future, it would be reckless to assume that technological solutions would be as effective, and implemented in as comprehensively or timely a manner, as they would need to be to avoid catastrophic global warming. Avoiding or indeed reversing population growth would, however, be a guaranteed way of mitigating emissions. There is nothing an individual can do to reduce their carbon footprint that even remotely compares to the impact of forgoing having a(nother) child. This is true anywhere, but in the shorter term it is particularly true of developed countries. A 2017 study31 found that a person in a developed country who opts to have one fewer child than they would otherwise reduces annual personal emissions of greenhouse gases by 58.6 tons per year, the equivalent of thirty-six round-trip transatlantic flights. In contrast, living car-free would generate a reduction of 2.4 tons per year, and eating a plant-based diet would avoid 0.8 tons of greenhouse gases per year. This research built on a 2009 study,32 which found that each child in the United States adds on average the equivalent of 5.7 times the parents’ lifetime emissions to their impact, taking account of the child’s estimated emissions over their lifetime as well as a share of the emissions produced by the child’s own descendants, assigning half to each parent. Similarly, a 2010 study33 using an energy and economic P op u lation Gove r nance 

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growth model that accounted for a range of demographic dynamics found that reducing population growth could provide 16 to 29 percent of the emissions reductions thought necessary by 2050 to avoid dangerous climate change. The same research team reported in 2012 that empirical analyses of historical trends tend to show CO2 emissions from energy use responding almost proportionately to changes in population size, and that alternative population growth trajectories could have substantial effects on global emissions of CO2. In its 2021 report, the IPCC concluded that escape from human-caused climate change is no longer possible. It is already too late to prevent warming that will almost certainly result in far more frequent, deadlier heatwaves, flooding and droughts, the collapse of ecosystem services, and other natural catastrophes. The Earth has already warmed by about 1.1°C above pre-industrial levels. Global warming of 1.5°C, the hoped-for limit under the 2015 Paris Agreement, is already a foregone conclusion; we will reach this level of warming within another twenty years. Temperatures will keep on rising until at least 2050, no matter what reductions we are able to achieve in emissions of greenhouse gases. And to date we have achieved none at all. Global concentrations of greenhouse gases are at the highest level ever observed, despite a modest, temporary decrease in emissions during the Covid-19 pandemic.34 The imperative to grow more food, build more housing and public infrastructure, produce greater quantities of basic consumer goods for ever more people, cannot lead to anything other than a worsening of the climate crisis, as all these things are major drivers of emissions.35 Food production alone contributes a larger share of greenhouse gas emissions than the entire transport sector—more than all cars, trucks, trains, planes, and ships combined. This includes such varied contributions as the loss of carbon sinks from deforestation, methane emissions from cattle and from rice cultivation, CO2 emissions from the burning of fields, and nitrous oxide36 emissions from the use of synthetic fertilizers on which modern agriculture is heavily reliant. Climate change is not the only problem; current food production is already unsustainable.37 In 280 

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addition to its contribution to climate change, food production is the dominant force behind defaunation, deforestation, and biodiversity loss; degradation of topsoils; and depletion of freshwater sources, among other severe environmental impacts. Agriculture is the most weather-dependent of all human activities, and extensively reliant on the same natural resources, ecosystem services, and stable climate being rapidly degraded by agriculture itself, along with other anthropogenic causes. Rising temperatures are already reducing the yields of major crops,38 and are expected to have severe effects on food supply over coming decades. The ongoing degradation of agricultural soils39 from overuse leads to an even greater reliance on environmentally damaging inputs and more pressure to deforest remaining arable soils, thus worsening greenhouse gas emissions from agriculture. The depletion of ground and surface sources of freshwater40 for agriculture, in turn, will be worsened by climate change–driven droughts and shifts in precipitation patterns. Through it all, our population will keep on growing, boosting demand for food41 while its supply, due to a concatenation of environmental crises, may be declining rather than increasing.

CO N C E P T UA L I Z I N G OV E R P O P U L AT I O N I have mentioned earlier in this chapter that population projections and their import are routinely misconstrued and misunderstood. Another source of error when thinking about overpopulation arises from how it is commonly conceptualized. For example, overpopulation is routinely conflated with crowding. One oft-repeated canard goes that Earth cannot possibly be overpopulated because the entire human population could stand, shoulder to shoulder, inside an area the size of Los Angeles. This would be very crowded indeed, but it is beside the point. From an environmental sustainability perspective, the physical space human bodies occupy is inconsequential. Even the space occupied by our buildings and roads is only a minor consideration (though these are often built over scarce agricultural

land). What matters is our ecological footprint, that is, the vast resources required to provide each of us with food, energy, clothing, housing, medicines, consumer goods, and to take in or disperse the various wastes and pollutants we produce. Under one estimate,42 the average amount of cropland required to sustain one person for a year is 1,700m2, taking account only of their caloric needs.43 One could only fit enough plots of this size for around 765,000 people in Los Angeles,44 or fewer than 0.01 percent of the global population.45 And we are speaking here of cropland, not just land. Only about 38% of the global land surface comprises arable soils, most of which already degraded to at least some degree by the demands of agriculture, or currently harboring beleaguered remains of wild habitat.46 Another misleading error is to conceptualize human overpopulation as an apocalyptic situation where collective goods are already so degraded and depleted as to cause famines, violence, and general chaos. This is akin to characterizing dangerous driving by describing car crashes. It confuses the problem with one of its most severe potential outcomes, leading to serious and predictable evaluative mistakes. Most notably, this kind of conceptualization disregards the accumulation of risk and sub-catastrophe harms as though of no normative significance, while focusing on too late a stage to be of any use. Due to demographic momentum it can take many decades to arrest population growth, and well over a century to reverse it—whether or not the relevant society can wait that long. Because of the compound nature of population growth and the long shadow of population momentum, anti-natalist interventions are most effective at averting catastrophe when implemented while overpopulation remains a somewhat distant and abstract concern. Reserving anti-natalist interventions for some eleventh-hour intervention on the eve of disaster, as implied by the population denialist position and suggested by many well-meaning people including some respected scholars, would mean, in essence, ignoring what we know of the risks and allowing the population growth trajectory to run its course, however catastrophic the consequences. This is not to say that anti-natalist interventions are only worth considering if implemented far in advance from potential

catastrophe; anti-natalist interventions would still reduce the number of extra lives put in harm’s way even if it is too late to avert catastrophe altogether. Overpopulation is neither about crowding nor about apocalyptic situations, though both are possible expressions of the problem. Let us consider again the analogous (if much simpler) problem of overfishing. The concept does not describe a situation where a fishery has already collapsed, or a high-value fish species has become extinct. It does not even describe a situation where there is a noticeable reduction in the quantities of fish being caught. Fishers’ overall catch may remain the same or rise due to increased fishing effort, even as fish stocks become seriously compromised. Instead, overfishing describes the underlying pattern of damage to a collective good, caused by a collective action problem that plays out over time. Overfishing arises when fishers catch fish at a faster rate than stocks are able to regenerate, progressively depleting fish populations and heading toward a point where the fishery is incapable of providing the livelihoods on which all the fishers depend. A sensible conceptualization of overpopulation must similarly focus on the underlying pattern of aggregate, cumulative harming and risking over time. I suggest overpopulation is best understood as a state of affairs where all of the following conditions obtain: 1. one or more collective goods necessary to satisfy minimum well-being requirements of a given population are becoming strained, sustaining damage, or undergoing depletion; 2. the downward resource trend is substantially or primarily caused by the ordinary consumption of the collective goods by the general public; and 3. a reasonable extrapolation of the downward resource trend reveals a risk to the satisfaction of everyone’s basic needs that is projected to become serious within a period of time corresponding to the life expectancy of the youngest people within that society. Thus understood, overpopulation is about the systemic risks generated by the persistent degradation P op u lation Gove r nance 

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and depletion of a wide range of needful resources, brought about by the ordinary aggregate demands of the population—by people just living their lives as they ordinarily do—and which generates serious risks within a moral time horizon corresponding to the lifetimes of people already in existence. This conceptualization is intentionally very undemanding. It assumes only a minimalist standard of protection of human well-being, and does not properly take account of the interests of future generations. It would allow severe decay in the condition and availability of collective goods, such as to deprive younger and future generations of the chance of living the kind of life we might take for granted. All that is required is that there is still safely enough to see people who are children today though their natural lifetimes without excessive hardship. There need not be enough to meet the minimal needs of their children. The same conceptualization could be easily adapted to reflect a more expansive—and I would argue, much more plausible—moral outlook, for example, replacing basic needs with the considerably higher standards reflecting the conditions for human flourishing. It could accord at least some normative force to collective goals such as a principle of progressive realization, including as a minimum non-retrogression, of fundamental human rights protections. And ultimately all rights require significant resources to give them effect, otherwise they are just nice ideas. A more plausible version would also expand the moral time horizon to take account of the interests of at least a few future generations. It might also take the interests of non-human animals into account, if we were to accept an even slightly less speciesist moral outlook. The more expansive the moral outlook, the more critical the current stage of overpopulation under this conceptualization. The evidence summarized in preceding sections suggests that even on implausibly minimalist standards of prudence, overpopulation as conceptualized above is well underway. A very wide range of essential natural resources are clearly strained, increasingly damaged, or undergoing depletion. This is principally caused by the aggregate effects of billions of people simply going about their lives, as 282 

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accumulated over several decades of an unsustainable population size. There is a clear and serious risk to food security and livelihoods within the lifetimes of people already alive. Due to their cumulative nature, each of the key facets of overpopulation—catastrophic global warming, food insecurity, overfishing, mass extinctions— pose even greater threats to younger generations, in particular children, hostage to whatever decisions their elders make, or fail to make. This intergenerational moral hazard is characteristic of creeping catastrophes caused by collective actions. It demands a particularly robust justification if the risks created, worsened or multiplied by population growth are to be tolerated and not acted upon. As noted above, the population deflection position seeks to characterize the environmental47 facets of overpopulation as overconsumption, specifically overconsumption by the privileged few. Traditionally the privileged few were framed as the totality of consumers in industrialized nations, with typically vague exhortations that such people ought to lower their consumption in some unspecified way. Alternatively, one might blame very large corporations, as though they alone were accountable for the environmental footprint of their operations, rather than the billions of people consuming what these corporations produce, manufacture, or extract. Finally, one might seek to narrow the blame down to the miniscule percentage of the world’s population representing the ultra-rich, as though their personal consumption, however extravagant or unconscionable, could possibly dwarf the collective impact of 8 billion people. Overpopulation can, indeed, be understood as systemic overconsumption of collective goods. This in no way diminishes the relevance of demographic factor; it merely reflects the structure of the problem, with population as a multiplier of per capita consumption. There is one important difference, however, between the risk contribution of population growth and of increases in per capita consumption. Population growth always entails an increase in committed consumption. The commitment corresponds to the minimum resources required to meet

(at least) aggregate subsistence needs of all the individuals within the population through their natural lifetimes. Lest we fall victim to a moralistic fallacy, we should be mindful that the committed nature of this type of consumption tells us nothing about its feasibility. In contrast, increases in per capita consumption are normally non-committed. Reversing these increases in consumption is likely to be deeply unpopular from a political perspective, and would almost certainly impair well-being. But if need be, some degree of rolling back of consumption is very possible and can be achieved at short notice—for example, wartime rationing. But population growth that proves to be unsustainable cannot be rolled back until several decades have passed, however dire the unforeseen challenges or resource shortages may be. A society which accepts population growth is undertaking a long-term commitment to an increased baseline of minimum consumption needs that it may not be in a position to honor.

VIR TUOUS PR O CR E AT I O N A ND R EPRE HE NSIB L E CO NSU MP T I O N? It should be clear by now that the population denial position is untenable. Rebutting the population deflection position, though, requires sorting out a further question: Even if we accept that population growth is the cause of serious harm, could we address those harms by focusing on consumption? After all, some people’s “ordinary” consumption is much higher than others. This kind of question presupposes that there is something morally reprehensible about consumption, or at least consumption of the kind that is ordinary in wealthier, developed countries. I suggest there are forms of consumption that are indeed per se unacceptable and wrongful. I would include under this heading consumption that involves disproportionate or extravagant waste (e.g., fishing discards, appliances and electronics that are cheaper to replace than to repair, fast fashion, single use glass bottles and jars), unjustifiable environmental fouling (e.g., single-use plastics, ozone-depleting CFC-containing products), cruelty to animals (e.g.,

industrial animal farming, wet markets, bear bile farming), dependence on exploited labor (e.g., clothing from sweatshops, produce picked by miserably paid workers), or something akin to environmental vandalism (e.g., palm oil cultivation, bottom trawling, the logging of tropical hardwoods, whaling, the trade in rhino horn and ivory; ghost fishing gear, bushmeat from endangered species, and arguably grain-fed beef and dairy). Each of these types of “bad” consumption is independently a problem, and would be even if our global population was much smaller. But bad consumption is only a relatively small component of our global population’s systemic overconsumption. Even if it were possible to introduce and enforce international standards effectively eliminating all unacceptable forms of consumption, we would almost certainly still have an overpopulation problem, albeit with a little much-welcomed relief to its severity and speed. The consumption that is driving catastrophic risks to human welfare and to the survival of our societies is substantially of a kind that is not per se objectionable. There is nothing intrinsically reprehensible about wanting to live, or continue to live, the kind of materially secure, comfortable life commonly enjoyed by average people in developed countries, and to which billions of people aspire. There is nothing per se wrong with wishing to fly to a far-away location to experience a different culture or enjoy beautiful sights during a nice holiday, or to want to own and drive a well-designed car. Similarly, there is nothing reproachable in desiring for oneself a reasonably sized house that is not too hot in summer nor too cold in winter, comfortably furnished and equipped with labor-saving appliances as well as entertainment devices, a well-equipped kitchen, and a clean bathroom. These are ordinary human aspirations. What makes them problematic is that we have allowed our numbers to balloon to several billion. Flying has a very high environmental cost; it would not be problematic in a world with a small population, but that is not the world we have created for ourselves. Building new homes, manufacturing and powering vehicles, and producing and distributing consumer goods are all major drivers of climate-wrecking greenhouse gas emissions and other forms of environmental P op u lation Gove r nance 

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degradation. And given our numbers, virtually any raw material one can think of is being used up at unsustainable rates. Even something as ordinary and seemingly plentiful as sand, used to make all sorts of things modern life relies on, such as concrete, asphalt, glass, silicon chips. As Pascal Peduzzi, a researcher with the United Nations Environment Programme has put it, “We cannot extract 50 billion tons per year of any material without leading to massive impacts on the planet and thus on people’s lives.”48 The standard of living that could be sustainably secured for 8 billion people is likely quite low. A 2018 study49 looked at this question, applying the “safe and just space” framework proposed by Kate Raworth, which conceptualizes sustainability in terms of resource use that meets people’s needs in a just manner and without transgressing critical environmental boundaries. The researchers found that a population of 7 billion could have their basic physical needs, such as nutrition and sanitation, met at a level of resource use that did not significantly transgress planetary boundaries.50 However, they found that securing for all such luxuries as a healthy life expectancy and a secondary education would require a level of resource use two to six times higher than what can be sustained. At this point, it may be argued that we should nonetheless refrain from interfering with people’s procreative behavior on the basis that we can, and should, seek to resolve unsustainability by reducing per capita consumption in developed countries. After all, the majority of future population growth is set to take place in the least developed countries, where levels of consumption remain very low. Some version of this argument has often been made by, for example, prominent U.K. environmentalist and journalist George Monbiot. There are at least two reasons to reject this argument. First, it presupposes that people born in poor countries will remain poor for life, and that even the consumption impact of their (potentially very numerous) descendants will not amount to much at all. This clearly is not the case, or at least not necessarily the case. As a notable example, up until the 1970s and well into the 1980s, China was a very poor country. But nowadays, while most Chinese people continue 284 

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to subsist on a low income, few are poor. According to an analysis by the Pew Research Centre, over the course of a single decade—between 2001 and 2011— China’s middle class jumped from 3 to 18 percent, while the poverty rate fell from 41 to 12 percent.51 Given the overall size of China’s population, these figures represent hundreds of millions of people who became significantly more affluent over a few short years. At any rate, our solution to overshoot cannot rely on the permanent immiseration of billions of people as well as their descendants. Second, to ignore population growth in the least developed countries is to be indifferent to the fate of hundreds of millions of people who would be predictably placed in harm’s way, in addition to the chronic and sometimes letal hazards faced by children born into poor, large families. It amounts to ignoring the severe poverty trap posed by population growth in contexts of scarcity.52 Many of these countries are already facing severe food security challenges because of population growth, in addition to high rates of youth un- and under-employment—an altogether explosive combination.53 A possible variation of this argument, implicit in purportedly rights-based moralized indifference towards overpopulation harms, is that people value procreation more highly than consumption, and therefore would suffer a greater harm if induced to limit their families than if subjected to a limitation upon their freedom to consume. This is not quite how this argument is usually formulated. Generally speaking, where it is argued that consumption needs to be reduced in lieu of considering population policies, no suggestion is made that there would be any cost to this, any limitation in individual freedoms. Indeed, typically there is no concrete proposal of any kind for how consumption might be substantially reduced. Here one might make a vague suggestion that we look to make improvements in efficiency. This speaks to our cognitive biases;54 implicitly, the suggestion is that if we hold on and wait for technology to solve this, someone will figure out a way for people to keep on consuming as they do now but with a smaller impact. This has been described as the resource efficiency improvements fallacy.55

Logically, it is fundamentally impossible—not just difficult, but impossible—to offset population growth with lower per capital consumption. Population growth involves the multiplication of entire lifetimes’ worth of consumption, while per capita consumption can only ever be reduced marginally. And then there is the further problem that, to date, improvements in efficiency have reliably led consumption to rise rather than fall. This disheartening phenomenon is known as Jevon’s paradox,56 whereby greater efficiency causes lower prices and higher consumption, often via the creation of new or more extravagant uses for the same resource—for example, feeding grain to cattle, or wrapping homes and trees in LED lights to celebrate Christmas. Alternatively one might suggest that the general public, once appraised of the facts, will voluntarily limit their personal consumption, such as to render unnecessary any “draconian” regulation of our behavior—whether procreative or consumptive. This seems to assume people choose to live their lives the way they do purely out of naïve ignorance of the aggregate consequences of billions of others making a similar choice. But this author knows of no precedent for a significant, voluntary reduction in per capita consumption, anywhere, at any time. People are routinely forced to consume less by dint of circumstances—unemployment, rising prices, supply shortages, and so on. But these reductions are not voluntary, and typically do not persist once the individual has the opportunity to resume higher levels of consumption. Research on this topic is replete with discouraging results. Numerous surveys have found that consumers’ self-reported “green” attitudes are only weakly predictive of willingness to buy green products,57 which are typically more expensive (due to the internalization of costs which are otherwise externalized onto the natural environment) or, if made of recycled materials, often assumed to be of inferior quality.58 One study found no significant difference in the energy consumption and CO2 emissions of environmentally minded consumers compared to those of “environmentally unaware” consumers.59 Yet another found that people’s environmental impact is best predicted by their income level (and therefore ability to

consume more), and not by whether they self-identify as environmentally minded. While individuals with high pro-environmental self-identity intended to behave in an ecologically responsible way, they typically focused on actions with small ecological benefits.60 A recent study tested the hypothesis that parents might be greener than non-parents in their personal consumption because they think and worry more about the future and might try to offset the added CO2 emissions arising from the creation of their children. It found that parents personally consume more, and thus emit more CO2 than their childless peers.61 By and large, increased individual consumption means people’s lives are more comfortable, convenient, and enjoyable. We can reliably expect reduced consumption to cause a significant setback to people’s well-being, at least during some initial period of adjustment. And people are unlikely to do it voluntarily, on a collective basis, to any significant extent. So reducing consumption would likely require interference with a range of freedoms concerning how people make and spend money, potentially affecting a myriad of aspects of their lives. It might require one or more of, for example: 1. caps on personal income, wealth, or expenditure; 2. bans on manufacture, sale, and consumption of certain particularly damaging products (e.g., single-use plastics, bitcoin, fossil fuel-powered vehicles and machinery); 3. restrictions on how products may be designed and sold (e.g., mandating standardized, reusable containers and deposit return schemes for a wide range of consumer products); 4. personal or household allowances limiting how much of certain items may be purchased in any one year (e.g., animal products, air travel, clothing) or owned at any one time (e.g., cars, homes, TVs); 5. internalization of environmental externalities, and ideally animal welfare and fair labor costs, across all products, which would significantly raise the prices of virtually all consumer goods; 6. mandated composting and recycling, and volume- or weight-based fees for processing non-recyclable waste; P op u lation Gove r nance 

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7. restrictions on house building and home refurbishments; 8. mandated role-modeling on advertising and entertainment (e.g., to deglamorize consumerism and normalize consumptive restraint). These may appear shocking proposals, or alternatively they may appear like exactly the kinds of interventions we should be adopting. This may depend on one’s degree of appreciation of our environmental predicament, or on the strength of one’s libertarian leanings. But I suggest they are not obviously better than anti-natalist interventions, in the sense that the extent of interference is not obviously smaller, or likely to be less onerous. On the contrary, consumption-curtailing policies seem to have potential for far more pervasive interference with people’s freedom to lead their lives as they wish than policies nudging, incentivizing, or even compelling people to (say) have no more than one biological child. And insofar as consumption-reduction policies were to be pursued in lieu of anti-natalist population policies (instead of in addition to, as logically they ought to be), they would appear to be going against the moral priority indicated by the revealed preferences of ordinary people. Human beings normally do not choose to consume less, and given the opportunity, for example, by technological advances cheapening resource extraction, we can be counted on to consume even more than we already do. But people routinely elect to curtail their procreative aspirations so as to avoid having to cut their per capita consumption. Of course, not everyone makes a choice about family size. Fatalism, lack of access to contraception or abortion, kin and peer pressure, and intimate partner coercion, for example, are all factors in the estimated 23 percent of births which are not actively wanted.62 But one of the most commonly cited reasons for people choosing to have fewer children than they would otherwise prefer is the wish to preserve one’s standard of living, including the wish to provide a good education for one’s existing offspring.63 That is to say, people routinely make the opposite trade-off to that which population deflection and moralized indifference enjoin us to make for the sake of avoiding interference with procreative behaviors and preferences. 286 

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A further factor to consider is that multiple lines of evidence demonstrate that family size preferences and the desire for children are substantially socially determined, much as our consumption habits. As Partha DasGupta puts it, our reproductive preferences are socially embedded.64 We should not assume that procreative preferences are especially genuine or even instinctive. Much like consumption, our preferences about family size are shaped by the behavior and stated preferences of our peers, the views of our family and friends, and other sources of role-modeling and social norm signaling, such as mass media. The sheer ubiquity and strength of pronatalist cultural messaging and attitudes in virtually all societies should also cause us to question the innateness of anyone’s desire to have children. What would their true preferences be, in a world where they are not constantly urged to see having children as a badge of normality, success, and respectability? What family size they would prefer, if they were urged by friends and family to carefully consider the responsibilities and wider consequences of having a child before making a decision, rather than being encouraged to err on the side of procreation? It is possible for us to glean some indication of what such a world might be like, one where having a child is a decision approached with restraint and reflection, rather than a foregone conclusion. Where traditional pronatalist attitudes have been disrupted by anti-natalist policy interventions, such as in China, South Korea, Singapore, Taiwan, and Japan, very low fertility rates have endured well after the emergence of societal aging-type concerns that birth rates were too low. This is at least suggestive that, if couples feel they will not face social stigma if they choose to have just one child, or indeed none, they very often will do that. And anti-natalist interventions can greatly assist in bringing about this enabling cultural shift.

P E R S O N A L L I B E R T I E S, R I G H TS, A N D T H E I M P L I C AT I O N S O F CO L L E C T I V E AC T I O N P R O B L E M S Overpopulation is caused by behavior we find troubling to problematize, and even more troubling to

address. It arises from the cumulative, aggregate impacts of ordinary people going about their lives in ordinary ways, in some cases doing what we have come to believe individuals are entitled to do: have as many children as they like, pursue as good a livelihood as they can manage, and consume resources not only to live but to live well, with as many comforts and conveniences as they can secure for themselves and their loved ones. As a collective action problem, the contribution of each individual is relatively trivial, and addressing it requires social coordination, and at least some degree of compulsion. This is simply the nature of collective action problems. As classically stated by Olson (1965), “Unless the number of individuals in a group is quite small, or unless there is coercion or some other special device to make individuals act in their common interest, rational, self-interested individuals will not act to achieve their common or group interests.”65 Let us return briefly to overfishing, that simpler analogue to overpopulation. The collective action problem arises because it is individually rational for each fisher to catch as much fish as they can. If any of them were to unilaterally reduce their catch or adopt a moratorium on fishing, they would harm their own livelihoods, while the fish they did not catch might just be caught by somebody else anyway. Their individual impact, on its own, is not enough to save, or indeed doom, the fishery. The solution to the problem requires coordination across all fishers; they must collectively agree to reduce their individual catches to the degree required to allow fish stocks to recover. This reduction will unquestionably hurt the fishers’ livelihoods, so the temptation to free-ride will be strong. Compliance cannot be voluntary or optional, or the whole response to the problem falls apart. But without a high level of compliance, the solution will fail, and those who have limited their catch will have done so for nothing: their livelihoods will still disappear along with that of those who did not limit their catch. Participants may quite reasonably demand assurances that fishers exceeding catch limits will face appropriate sanctions. As noted at the beginning of this chapter, it is commonly assumed that anti-natalist interventions

are not permissible because they are coercive. But it is absurd to suppose that coercive conduct regulation is per se impermissible. Whether we realize it or not, harm-based limits on individual freedoms are a necessary and ordinary aspect of any well-governed society. And the supposed alternative to coercion in relation to procreative choices—reducing consumption—would require coercion as well, and with respect to potentially far more pervasive aspects of how we lead our lives. Here one might object to the suggestion, outlined earlier, that people’s actions suggest they value the preservation of material comfort and financial security higher than they do the realization of their procreative preferences. It may be argued that from an ethical perspective, people’s revealed preferences and priorities do not matter; we have a basic right to procreate, while living a comfortable and secure life is not a generally recognized right, or at least not a right of comparable priority. This takes us to the moralized indifference-type objection to anti-natalist interventions mentioned earlier in this chapter. This line of reasoning suggests that seeking to encourage, entice or compel a person to have fewer children involves a violation of a virtually absolute right to have as many children as we like, whenever we like, and that we ought therefore not to do it. Instead, we ought to try other, potentially very costly indirect policy mechanisms for bringing about fertility reduction, and hold off on intervening in relation to procreation unless nothing else is even partially effective. This way of thinking, then, proposes that we accept open-ended costs and risks as a fair price to pay for preserving the freedom of individuals to create more people. Confronted with the abundant evidence of creeping catastrophes being built up by our unsustainable population size, a defender of the moralized indifference standpoint might be tempted to soften their objection to anti-natalist interventions and suggest that the messaging and incentive/disincentive-based intervention are capable of justification on the basis that they are not, strictly speaking, coercive. But they would probably resist any suggestion that the unquestionably coercive tool of compelled family P op u lation Gove r nance 

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planning could ever be legitimate or compatible with respect for constitutional or human rights. Indeed, given the close relationship between this objection and the population taboo, the objection would probably include a generalized dismissal: we should not even debate whether coercive interference with people’s freedom to create children would be effective or proportionate, because such interference is wrongful. But if compelled family planning were never justifiable, not under any circumstances—not even to prevent the birth of children to a parent who is unwilling or unable to meet their basic needs —then the right to procreate would have to be absolute. But no right, universal or not, is truly absolute. All rights have caveats, carve outs, or limitations, typically implicit. For example, consider the right to marry. The marriage partner must be legally able to consent, and actually consent, to entering the marriage, or the right to marry is not engaged at all. And the right to marry is usually accepted to be strictly limited; in nearly all jurisdictions, a person can have only one spouse at any one time. The right to enjoy the privacy of one’s home does not preclude a duly authorized police search if there are reasonable grounds of suspicion of a crime. The freedom to choose an occupation does not entitle anyone to practice law, medicine, or any other regulated profession without first acquiring the appropriate qualifications and passing any mandated certification processes, and so on. It would be philosophically absurd for a right that is so profoundly and uniquely other-affecting as the right to procreate to be invulnerable to the kind of limitations that uncontroversially, or much less controversially, are applicable to other, far less consequential rights. Indeed, where the subject of a right to procreate has been analyzed from a theoretical perspective, it is usually accepted that there must be some conditionality or limit applicable to it, under at least some circumstances, though this is typically left unelaborated. Sarah Conly’s recent work in this space is a notable exception, in that she explicitly argues that the extent of moral justification of a right to procreate is limited to one biological child per couple.66 The ways in which procreation is inherently other-affecting are both practical and normative, and 288 

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mean moral conflicts are essentially inevitable.67 On a practical level, procreation can only be achieved with the participation, willing or not, of a co-procreator. It involves the creation of another, highly vulnerable human being who will non-optionally rely on others for care for many years, and inevitably compete with others for resources and opportunities throughout their life. And properly understood, a right to procreate is not simply a freedom, or even a freedom coupled with claims to certain services or resources to support the parents’ exercise of that freedom. It uniquely includes a power to create new rights for and obligations unilaterally imposed on others, quite independently from the relational rights the parents create for themselves towards the child being created. The rights being created are principally the child’s, secondarily those of the parent(s) in their position as guardian(s) and caregiver(s) of the child. The obligations being imposed are principally on society at large as represented by the state, to make good on a wide range of legal, moral and practical entitlements to access to public services and resources, including but not limited to those needed to satisfy their human rights, to which the child will be entitled as an added member of that society. Additional burdens are imposed on family members and relatives, in particular existing children. These are typically in the nature of practical obligations to share what may be already insufficient domestic resources and to provide childcare, but may extend to socially or legally enforceable duties of financial support. It is important to note that there is nothing about the “natural” mechanism by which procreation creates new needs and entitlements that would mean the corresponding and costs on others are automatically fair, or compossible with existing rights, needs or duties of other persons. Indeed, the growing practical non-compossibility of meeting everyone’s human rights due to overpopulation is arguably the most severe moral conflict involving human rights claims. It means the right to procreate, as commonly understood, stands in conflict with virtually every other human right and other high-priority requirements of justice. Far from seeking to address the unsustainability of our human population before the

problem becomes catastrophic, for decades our political leaders have engaged in the outright promotion of further population and economic growth under neoliberalism and other empirically untethered and ethically hollow growthist ideologies. As a result, today’s youngest generation is likely to live through extensive environmental pauperization, which might lead to severe social destabilization and lowered well-being and security, perhaps to such a severe extent as to make biological parenthood ethically prohibitive for them. All rights are costly and require justification of the corresponding burdens on duty-bearers, including potential costs to competing rights, interest, and requirements of justice. What value is expressed by wholly unfettered procreative freedom that is so important as to override our moral duties to today’s existing children or to future generations, or even the prudential interests of our future selves? This chapter cannot do justice to such a complex topic. I will simply suggest here that an unconditional, unlimited right to procreate does not seem capable of philosophical justification, at least not unless we place overriding value on the sheer (and temporary) multiplication of our numbers, without any regard to the impact of this multiplication on the life chances of countless human beings. And this is an utterly implausible evaluative basis for accounting for any right at all. What right to procreate we have must be conditional and limitable. Some degree of impingement upon it or qualification, as with other rights, must logically be capable of justification. This would include the possibility of coercive anti-natalist interventions, where likely to be the most effective and proportionate policy response, in the same way as with the policy interventions which could and should be considered for materially reducing consumption. The moralized indifference line of reasoning is based on a serious error about the nature of rights and moral priority. The right to procreate is not the end point of all morality, and cannot override all other ethical and practical considerations. It certainly does not afford us an excuse to avoid awkward conversations about when procreation may be harmful and when anti-natalist interventions may be justified.

CO N C LU S I O N Based on what is known of the world, we can have no grounds for confidence that a human population of 7 or 8 billion can be supported longer term, let alone a considerably larger one. Humanity has been drawing on environmental capital for decades, eroding its future means of support and generating potentially catastrophic damage to collective goods on which we all depend for our survival and well-being. Though undeniably some individuals have greater impacts than others, every one of us draws from natural resources and other collective goods, every day, even the very poor. As outlined in this chapter, it is common for discourse on climate change and other overpopulation-related hazards to frame consumption as a matter of greed and selfishness, while simultaneously positioning procreation as virtuous and self-abnegating, or at least as higher priority. But albeit that some specific forms of consumption may be reprehensible, there is nothing intrinsically reprehensible about consumption. We cannot survive without consuming food, water, fuel, in addition to a wide range of materials with which we make our clothing, homes, medicines, and all sorts of useful things. And we should be careful not to idealize procreation. Having a child is intensely other-affecting, and therefore inherently capable of causing moral conflicts and harm. Population growth takes decades to arrest, and even longer to reverse, making it virtually impossible for policymakers to respond dynamically to miscalculations or unforeseen challenges relating to a society’s ability to provide for the needs of all its people. But respect for human rights does not require that we accept catastrophic risks as the price of our freedoms. On the contrary, it requires that we accept that the right to procreate as well as our freedoms relating to consumption are indeed limitable. Solving collective action problems generally requires mutual agreement to restrain our individual liberty to pursue our own individual self-interest as reasonably necessary to safeguard and advance our collective interests. The limitations we agree upon must ultimately be subject to some degree of P op u lation Gove r nance 

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enforcement as necessary to secure sufficiently high levels of compliance for the solution to work and to minimize scope for free riding. In some contexts, social pressure, perhaps developed via appropriate public messaging efforts raising awareness of the issue, may be enough. But we cannot, and should not, rule out more assertive anti-natalist population interventions where public messaging or other more oblique anti-natalist population policies may be insufficiently effective. To do so would entail prioritizing a narrow human interest of present reproductive age populations—the interest in unfettered procreative freedom—over virtually all other human interests, in particular those of younger and future generations. Scaling back our procreative and lifestyle aspirations would represent an undeniable cost. But cost-free mitigation is unrealistic, and waiting for a non-existing technological solution to materialize is deeply irresponsible. It is within our ken to induce a fall in fertility rates with appropriate, well-designed, and well-funded anti-natalist population policies. Doing so would mitigate a wide range of catastrophic hazards, by reducing the causative human pressures as well as the number of people in harm’s way.

N OTE S 1. Population policies are actions taken explicitly or implicitly by public authorities in order to prevent or address imbalances between demographic changes on the one hand, and social, economic, and political goals, on the other. They may focus on migration, looking to regulate internal or cross-border flows of people, or on procreation, looking to influence fertility rates and patterns of family formation. Procreation-focused population policies may be anti-natalist or pro-natalist. See John May, World Population Policies (Dordrecht: Springer, 2012): 2–3, 42. 2. I have not included here broad-ranging and largely endogenous social processes such as economic development and urbanization, which are also frequently suggested to cause fertility to decline, as these cannot sensibly be considered as components of an anti-natalist population policy. At any rate, to the extent that these general processes correlate with declining fertility rates, the causation is almost certainly better explained by the increased cost of/reduced utility of children already discussed in relation to the human capital formation measures discussed in this section. See, for example, Jean Dreze and Mamta Murthi, “Fertility, 290 

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Education, and Development: Evidence from India,” Population and Development Review 27, no. 1 (March 2001): 33–63. 3.  Gilda Sedgh et al., Unmet Need for Contraception in Developing Countries: Examining Women’s Reasons for Not Using a Method (New York: Guttmacher Institute, June 2016). 4.  See, for example, Westoff’s 2010 report on the desired number of children that reviewed reproductive preferences in sixty countries based on data from Demographic and Health Surveys conducted between 1998 and 2008. Westoff concluded that there had been a decline in the total fertility rate in most of the sixty countries, and this was due largely to a decline in the number of children parents wanted to have rather than to a reduction in unintended births. Preference for a very large family remained widespread in Sub-Saharan Africa. Charles F. Westoff, “Desired Number of Children: 2000–2008,” DHS Comparative Reports No. 25 (Calverton, MD: ICF Macro, February 2010). 5. Fatalism about procreation describes the attitude toward procreation, common in traditional, high-fertility settings, whereby people do not see family size as falling within the calculus of conscious choice. For example, Le­Grand et al. (2003) found that rural people living in high-fertility contexts in Zimbabwe and Senegal did not seem to engage in any deliberate fertility strategy and in particular did not have extra children by way of “insurance” against the risk of child death. See Thomas LeGrand et al., “Reassessing the Insurance Effect: A Qualitative Analysis of Fertility Behavior in Senegal and Zimbabwe,” Population and Development Review 29, no. 3 (September 2003): 375–403. Within religious societies, procreative fatalism is often rationalized into a stated belief that using contraception, or otherwise attempting to make decisions about how many children to have, is against the will of God. A 2014 survey by the Pew Research Center found that 65 percent of people in Pakistan, 54 percent in Nigeria, and 52 percent in Ghana regard contraception as “morally unacceptable.” See Jacob Poushter, “What’s Morally Acceptable? It Depends on Where in the World You Live” (Pew Research Center, April 15, 2014). 6. Multiple studies suggest that higher levels of education and affluence may have a “U”-shaped correlation with fertility, initially reducing it then increasing it. For example, Fort et al. (2011) found that compulsory schooling reforms in Europe, which increased levels of education, caused “a substantial decrease in childlessness and an increase in the number of children per woman.” Similarly, Oshio (2019) found a robust positive correlation between female employment and fertility in developed countries. See Margherita Fort et al., “More Schooling, More Children: Compulsory Schooling Reforms and Fertility in Europe,” Working Paper DSE no. 787, Università di Bologna, Department of Economics (June 2011); and Takashi Oshio, “Is a Positive Association between Female Employment and Fertility Still Spurious in Developed Countries?,” Demographic Research 41 (November 21, 2019): 1277–88.

7. For example, Upadhyay and Karasek (2012) analyzed demographic and health survey data for Guinea, Mali, Namibia, and Zambia relating to women’s empowerment and ideal family size. They found no consistent association between indicators of women’s empowerment with a desire for smaller families or women’s ability to avoid having more children than they wanted. 8.  For example, a longitudinal review of the relationship between education and fertility in Sub-Saharan Africa found it to be “weak and complex” and able to explain only a small part of the fertility decline observed from 1975 to 2005. See Michel Garenne, “Education and Fertility in Sub-Saharan Africa: A Longitudinal Perspective,” DHS Analytical Studies no. 33 (Calverton, MD: ICF International, December 2012). 9.  For example, Grant (2015) found that a substantial increase in female schooling attainment in Malawi between 1992 and 2010 did not raise the age at which girls and young women first become mothers. This may be because the expansion of school enrollments came at the expense of school quality, as educational and teaching resources are spread thin to cope with the ever-larger cohorts of children. See Monica J. Grant, “The Demographic Promise of Expanded Female Education: Trends in the Age at First Birth in Malawi,” Population and Development Review 41, no. 3 (September 2015): 409–38. Another contributing factor is that the jobs market has not grown nearly enough to keep up with population growth, such that the majority of young Africans with any secondary schooling will be unable to find employment. See Deon Filmer and Louise Fox, Youth Employment in Sub-Saharan Africa: Overview (Washington, DC: International Bank for Reconstruction and Development and The World Bank, 2014). 10.  See, for example, Omer Moav, “Cheap Children and the Persistence of Poverty,” The Economic Journal 115, no. 500 (January 2005): 88–110. 11.  The International Labour Office (ILO) has been chronicling a rising trend in un- and under-employment at the global level since at least 1991, as the growth in the number of people seeking to enter the labour market persistently exceeds job creation. The lack of decent work affects women and young people most keenly. See the ILO’s World Employment and Social Outlook Trends reports and linked publications, which are available at www.ilo.org. 12. The funding of “pay-as-you-go” public pension schemes is often cited as a purported reason for pro-natalist policies promoting further population growth. PAYG schemes rely on an ever-larger working population, so doomed to eventual collapse if they are not transitioned into alternative systems, such as capital funded schemes. Larger cohorts of young workers go on to become larger cohorts of older people requiring even larger cohorts of young workers to support them in their retirement, and so on. 13.  It is well established that, in addition to short birth intervals, larger family sizes (or higher parity) increase the

risk of infant and child mortality. For example, Kozuki et al. (2013) considered data from demographic and health surveys from forty-seven low- and middle-income countries to examine the impact of large families on under-five and neonatal mortality, and found that children of mothers of large families faced a higher mortality risk compared to mothers of small families. Naoko Kozuki et al., “Residual Confounding Explains the Association between High Parity and Child Mortality,” BMC Public Health 13, Suppl. 3 (2013): S5. 14. The literature on the relationship between family size and educational attainment is extensive and is usually framed as studies of the quality–quantity trade-off effect. Recent studies include Li et al. (2017), who considered census data from seventeen countries in Asia and Latin America to investigate the relationship between family size and children’s educational attainment. They found that on average, one additional sibling in the family reduces the probability of secondary education by 6 percentage points for girls and 4 percentage points for boys. See Jing Li et al., “Education Gains Attributable to Fertility Decline: Patterns by Gender, Period, and Country in Latin America and Asia,” Demography 54, no. 4 (August 2017): 1353–73. Li and Zhang (2017) found that prefectures in China with stricter enforcement of the one-child policy experienced larger declines in family size and also greater improvements in children’s education. See Bingjing Li and Jongliang Zhang, “Does Population Control Lead to Better Child Quality? Evidence from China’s One-Child Policy Enforcement,” Journal of Comparative Economics 45 (2017): 246–60. Dumas and Lefranc (2019) considered the impact of a municipal ban on contraceptives imposed by the mayor of Manila in the late 1990s, and found that it led to a significant increase in family size and a sizable decrease and children’s educational attainment. See Christelle Dumas and Arnaud Lefranc, “‘Sex in Marriage Is a Divine Gift’? Evidence on the Quantity–Quality Tradeoff from the Manila Contraceptive Ban,” The World Bank Economic Review 33, no. 1 (2019): 259–85. Ito and Tanaka (2018) considered the effect of abolishing user fees from health services in South Africa, and found that the policy resulted in lower fertility in households and greater educational attainment for children a decade later. The effect also applies to wealthy countries such as the United States. See Takahiro Ito and Shinsuke Tanaka, “Abolishing User Fees, Fertility Choice, and Educational Attainment,” Journal of Development Economics 130 (2018): 33–44. Blake (1987) found that, in the United States, “education among those with many siblings is disproportionately cut short before high school graduation.” See Judith Blake, “Number of Siblings and Educational Attainment,” Science 245, no. 4913 (July 7, 1989): 32–36. Similarly, Haan (2010) considered data from a longitudinal study of people in Wisconsin, United States, between 1957 and 2005. She found a significant negative correlation between family size and children’s educational attainment, but specifically affecting later-born children P op u lation Gove r nance 

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while mostly sparing first-borns. See Monique de Haan, “Birth Order, Family Size and Educational Attainment,” Economics of Education Review 29 (2010): 576–88. 15.  For example, Chen (2021) considered the impact of Vietnam’s two-child policy and found that having an additional sibling lowers a five-year-old Vietnamese child’s height-for-age and weight-for-age scores by 0.3 and 0.26 standard deviations. See Qihui Chen, “Population Policy, Family Size and Child Malnutrition in Vietnam: Testing the Trade-off between Child Quantity and Quality from a Child Nutrition Perspective,” Economics and Human Biology 41 (2021): 100983. Similarly, Liu (2014) considered data following the relaxation of China’s one-child policy and found that family size had a significant negative effect on child height. Haoming Liu, “The Quality–Quantity Trade-off: Evidence from the Relaxation of China’s One-Child Policy,” Journal of Population Economics 27, no. 2 (April 2014): 565–602. 16.  See Linda Wänström and Bertil Wegmann, “Effects of Sibship Size on Intelligence, School Performance and Adult Income: Some Evidence from Swedish Data,” Intelligence 62 (2017): 1–11; Mary A. Silles, “The Implications of Family Size and Birth Order for Test Scores and Behavioral Development,” Economics of Education Review 29 (2010): 795–803; and Blake, “Number of Siblings and Educational Attainment.” 17.  See, for example, Shangao Wang et al., “The Trade-off between Quantity and Quality in Family Fertility Decision: Evidence from China’s Family Planning Policy,” Frontiers of Economics in China 16, no. 1 (2021): 67–104; Wänström and Wegmann, “Effects of Sibship Size on Intelligence, School Performance and Adult Income: Some Evidence from Swedish Data” (2017); and Jan van Bavel, “The Effect of Fertility Limitation on Intergenerational Social Mobility: The Quality–Quantity Trade-off during the Demographic Transition,” Journal of Biosocial Science 38 (2006): 553–69. 18.  Goodkind’s 2017 study estimated that China’s “draconian” one-child policy, which was principally based on financial incentives, disincentives, and public messaging, probably averted between 360 and 520 million births, and that those averted births are projected to double by 2060 due to population momentum. See Daniel Goodkind, “The Astonishing Population Averted by China’s Birth Restrictions: Estimates, Nightmares, and Reprogrammed Ambitions,” Demography 54 (2017): 1375–1400. 19.  For a more detailed typology, see Diana Coole, “Too Many Bodies? The Return and Disavowal of the Population Question,” Environmental Politics 22, no. 2 (2013):195–215. For related discussions, see also Adair Turner, “Population Priorities: The Challenge of Continued Rapid Population Growth,” Philosophical Transations: Biological Sciences 364, no. 1532 (October 27, 2009): 2977–84; Helen Kopnina and Haydn Washington, “Discussing Why Population Growth Is Still Ignored or Denied,” Chinese Journal of Population Resources and Environment 14, no. 2 (2016): 133–43; Karin Kuhlemann, “The Elephant in the Room: The Role 292 

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of Interest Groups in Creating and Sustaining the Population Taboo,” in Climate Change Denial and Public Relations, eds. Nuria Almiron and Jordi Xifra (London and New York: Routledge, 2020); and Diana Coole, “The Toxification of Population Discourse: A Genealogical Study,” The Journal of Development Studies 57, no. 9 (2021): 1454–69. 20.  For further discussion on population deflection, see Camilo Mora, “Revisiting the Environmental and Socioeconomic Effects of Population Growth: A Fundamental but Fading Issue in Modern Scientific, Public, and Political Circles,” Ecology and Society 19, no. 1 (2014): 38; Roy Beck and Leon Kolankiewicz, “The Environmental Movement’s Retreat from Advocating US Population Stabilization (1970– 1998): A First Draft of History,” Journal of Policy History 12, no. 1 (2000): 123–56; Timothy Clark, “‘But the Real Problem Is . . .’: The Chameleonic Insidiousness of ‘Overpopulation’ in the Environmental Humanities,” The Oxford Literary Review 38, no. 1 (2016): 7–26; and Richard Heinberg, There’s No App for That: Technology and Morality in the Age of Climate Change, Overpopulation, and Biodiversity Loss (Corvallis, OR: Post Carbon Institute, 2017). For examples of population deflection, see the following articles in the U.K. newspaper The Guardian: George Monbiot, “Cutting Consumption Is More Important than Limiting Population,” February 25 2009; “Stop Blaming the Poor. It’s the Wally Yachters Who Are Burning the Planet,” September 28, 2009; and “Population Panic Lets Rich People Off the Hook for the Climate Crisis They Are Fuelling,” August 26, 2020; Fred Pearce, “It’s Not Overpopulation that Causes Climate Change, It’s Overconsumption,” September 19, 2014; and Charles Eisenstein, “Concern about Overpopulation Is a Red Herring; Consumption’s the Problem,” March 28, 2014. 21.  See Tomas Frejka, “World Population Projections: A Concise History,” Working Paper No. 66 (New York: Center for Policy Studies, The Population Council, 1981); and Geoffrey McNicoll, “The United Nation’s Long-Range Population Projections,” Population and Development Review 18, no. 2 (June 1992): 333–40. 22.  The UN 2019 revision places the likelihood that the global population will peak before 2100 at around 27 percent. This is in keeping with the probabilistic projection by Gerland et al. (2014), which rated the chances that population growth would end this century at 30 percent. Patrick Gerland et al., “World Population Stabilization Unlikely This Century,” Science 346, no. 6206 (October 2014): 234–37. 23.  The medium variant is based on a complex matrix of assumptions about the interaction of cross-regional trends in fertility, mortality, and migration, but fertility remains the most critical element for future population size. 24.  United Nations, World Population Prospects 2019, Volume I: Comprehensive Tables, 48. 25.  See also United Nations, World Population Prospects: The 2012 Revision. Highlights and Advance Tables (2013): xv. 26. In general terms, the total fertility rate represents the estimated total number of children, on average, that a

woman will have in her lifetime. In contrast, a country’s birth rate simply represents the number of babies born per 1,000 population in a given year. The birth rate may spike, or drop, without necessarily affecting the total fertility rate, for example, if many women choose to have their babies in a particular year, or conversely to wait before having a baby, due to (say) prevailing economic conditions, but without changing the overall number of children they go on to have. 27.  See Dirk J. van de Kaa, “‘Ready, Willing, and Able’: Ansley J. Coale, 1917–2002,” The Journal of Interdisciplinary History 34, no. 3 (Winter 2004): 509–11. 28.  See Charles Westoff et al., “Indicators of Trends in Fertility in Sub-Saharan Africa,” DHS Analytical Studies 34 (Calverton, MD: ICF International, August 2013). See also Institut National de la Statistique (INS) and ICF International, Enquête Démographique et de Santé et à Indicateurs Multiples du Niger 2012 (Calverton, MD, 2013). 29. For discussions on the population taboo, see T. Michael Maher, “How and Why Journalists Avoid the Population-Environment Connection,” Population and Environment 18, no. 4 (March 1997): 339–72; Martha Campbell and Kathleen Bedford, “The Theoretical and Political Framing of the Population Factor in Development,” Philosophical Transactions of the Royal Society B 364 (2009): 3101–13; Arthur H. Westing, “Overpopulation and Climate Change,” The New York Times, February17, 2010; and Frances Kissling et al. “Talking about Overpopulation Is Still Taboo. That Has to Change,” The Washington Post, June 18, 2018. See also the survey by Wynes and Nicholas (2017), which found government guidance on how individuals can reduce their greenhouse gas emissions but routinely fails to mention the personal choices with the greatest impact, chief of which, by a wide margin, is having children. Seth Wynes and Kimberly A. Nicholas, “The Climate Mitigation Gap: Education and Government Recommendations Miss the Most Effective Individual Actions,” Environmental Research Letters 12 (2017): 074024. 30. Tim Jackson and Peter A. Victor, “Unraveling the Claims for (and against) Green Growth,” Science 366, no. 6466 (November 2019): 950–51. 31.  Wynes and Nicholas, “The Climate Mitigation Gap.” 32.  Paul A. Murtaugh and Michael G. Schlax, “Reproduction and the Carbon Legacies of Individuals,” Global Environmental Change 19 (2009): 14–20. 33.  Brian C. O’Neill et al., “Global Demographic Trends and Future Carbon Emissions,” PNAS 107, no. 41 (October 12, 2010): 17521–26. 34.  J. Blunden and T. Boyer, eds., State of the Climate in 2020. Special Supplement to the Bulletin of the American Meteorological Society 102, no. 8 (August, 2021). 35. William F. Lamb et al., “A Review of Trends and Drivers of Greenhouse Gas Emissions by Sector from 1990 to 2018,” Environmental Research Letters 16: 073005 (2021).

36.  Nitrous oxide has about 300 times the heat-trapping potential of carbon dioxide. It is also the dominant anthropogenic driver of depletion of the ozone layer. The IPCC estimates it comprises around 6 percent of greenhouse gas emissions, of which three-quarters comes from agriculture. Anthropogenic nitrous oxide emissions have increased by 30 percent since 1970. 37.  International Food Policy Research Institute (IFPR), 2016 Global Food Policy Report (Washington, DC, 2016). See also the Government Office for Science, Foresight: The Future of Food and Farming: Challenges and Choices for Global Sustainability. Final Project Report (London: Her Majesty’s Government, 2011). 38.  See, for example, Jonas Jägermeyr et al., “Climate Impacts on Global Agriculture Emerge Earlier in New Generation of Climate and Crop Models,” Nature Food s.43016 (2021); and Chuang Zhao et al., “Temperature Increase Reduces Global Yields of Major Crops in Four Independent Estimates,” PNAS 114, no. 35 (August 2017): 9326–31. 39. Topsoil is now being lost ten to forty times faster than it is being replenished by natural processes, and, since the mid-twentieth century, 30 percent of the world’s arable land has become unproductive due to erosion. The FAO estimates 25 percent of the world’s agricultural land is highly degraded; another 8 percent has moderate degradation; 36 percent is classed as slightly degraded, leaving only 31 percent in good condition. Food and Agriculture Organization of the United Nations (FAO), The State of the World’s Land and Water Resources for Food and Agriculture: Managing Systems at Risk (Abingdon and New York: FAO and Earthscan, 2011). 40.  A quarter of the world’s population, across seventeen countries around the world is already under extreme water stress, meaning they are using almost all the surface and ground water they have. Twelve of these countries are in the Middle East and North Africa. Around 1.4 billion people live in areas where ground water is being drawn at a faster rate than it can be replenished. The UN projects that almost half the world’s population will be living in areas of high water stress by 2030, which is likely to have severe effects not only on agriculture, which accounts for some 70 percent of water use, but also broader economic activity. See United Nations Department of Economic and Social Affairs (UNDESA), “International Decade for Action ‘Water for Life’ 2005–2015,” https://www.un.org /waterforlifedecade/scarcity.shtml, accessed February 21, 2022. The UN estimates that nearly 80 percent of the jobs constituting the global workforce depend on access to an adequate water supply. See UN Water, “Water and Jobs,” The United Nations World Water Development Report 2016 (Paris: UNESCO, 2016). 41.  Amy Molotoks et al., “Impacts of Land Use, Population, and Climate Change on Global Food Security,” Food and Energy Security 10 (2020): e261.

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42.  Thomas Kastner et al., “Global Requirements in Diets and the Consequences for Land Requirements for Food,” PNAS 109, no. 18 (May 2012): 6868–72. 43.  The FAO estimated in 2012 that the amount of arable land per person in developing countries will fall to only 1,400m2 on average by 2050. See Nikos Alexandratos and Jelle Bruinsma, World Agriculture towards 2030/2050: The 2012 Revision. ESA Working Paper no. 12-03 (Rome: Food and Agriculture Organization of the United Nations, 2012). 44.  Assuming an overall area of 1,300 square kilometers. 45.  Differences in diets, agricultural intensity, and soil productivity mean that regions so different as Western Africa and Northern Europe were found to have the same per capita cropland requirements based on 2005 data, at approximately 2,350m2 per person per year. The lowest cropland requirements were found in Southeast Asia, at 1,300m2 per person per year. See Kastner et al., “Global Requirements in Diets.” 46.  See note 40 and 44 above. 47. Vince Beiser, “Why the World Is Running Out of Sand,” BBC, November 8, 2019. 48.  Daniel W. O’Neill et al., “A Good Life for All within Planetary Boundaries,” Nature Sustainability 1 (February 2018): 88–95. 49.  Will Steffen et al., “Planetary Boundaries: Guiding Human Development on a Changing Planet,” Science 347, no. 6223 (February 2015). 50. Rakesh Kochhar, China’s Middle Class Surges, while India’s Lags Behind (Washington: Pew Research Center, 2015). 51. See Moav, “Cheap Children and the Persistence of Poverty” for a useful analysis. 52. Bradley A. Thayer, “Considering Population and War: A Critical and Neglected Aspect of Conflict Studies,” Philosophical Transactions: Biological Sciences 364, no. 1532 (October 2009): 3081–92. 53. See, for example, Karin Kuhlemann, “Complexity, Creeping Normalcy and Conceit: Sexy and Unsexy Catastrophic Risks,” Foresight 21, no. 1 (2018): 35–52. 54.  Lewis Akenji et al., “Ossified Materialism: Introduction to the Special Volume on Absolute Reductions in Materials Throughput and Emissions,” Journal of Cleaner Production 132 (2016):1–12. 55.  Christopher L. Magee and Tessaleno C. Devezas, “A Simple Extension of Dematerialization Theory: Incorporation of Technical Progress and the Rebound Effect,” Technological Forecasting & Social Change 117 (2017): 196–205. 56.  Yatish Joshi and Zillur Rahman, “Factors Affecting Green Purchase Behaviour and Future Research Directions,” International Strategic Management Review 3, no. 1–2 (June–December 2015): 128–43.

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57.  Leila H. Essoussi and Jonathan D. Linton, “New or Recycled Products: How Much Are Consumers Willing to Pay?,” Journal of Consumer Marketing 27, no. 5 (2010): 458–68. 58. Andrea Tabi, “Does Pro-environmental Behaviour Affect Carbon Emissions?,” Energy Policy 63, no. 1 (2013): 972–81. 59.  Stephanie Moser and Silke Kleinhückelkotten, “Good Intents, but Low Impacts: Diverging Importance of Motivational and Socioeconomic Determinants Explaining Proenvironmental Behaviour, Energy Use, and Carbon Footprint,” Environment and Behaviour 50, no. 6 (2018): 626–56. 60.  Jonas Nordström et al., “Do Parents Counter-Balance the Carbon Emissions of Their Children?,” PLOS One 15, no. 4 (April 2015): e0231105. 61.  Jonathan Bearak et al., “Global, Regional, and Subregional Trends in Unintended Pregnancy and Its Outcomes from 1990 to 2014: Estimates from a Bayesian Hierarchical Model,” The Lancet 6 (April 2018): e380–89. 62.  This is frequently reported in the news media, typically with a pronatalist slant. See, for example, the survey by Globescan, “The Empty Crib: Demography and Desire,” The Economist, August 27, 2016, 420, no. 9004: 14–16. 63. Aisha Dasgupta and Partha Dasgupta, “Socially Embedded Preferences, Environmental Externalities, and Reproductive Rights,” in Population Ethics for a Diminishing Planet, eds. Partha Dasgupta et al. (New York: Columbia University Press, 2019), 225–72. 64. Mancur Olson, The Logic of Collective Action: Public Goods and the Theory of Groups (Cambridge: Harvard University Press, 1965), 2. 65.  For an interesting analysis of procreation’s inherent conflicts of interests between parent and child specifically, see Rivka Weinberg, The Risk of a Lifetime: How, When, and Why Procreation May Be Permissible (Oxford: Oxford University Press, 2016). 66. In the realm of procreation ethics more generally, see the notable contributions of Travis N Rieder, Toward a Small Family Ethic: How overpopulation and climate change are affecting the morality of procreation (London, Berlin, and New York, NY: Springer, 2016), and Trevor Hedberg, The environmental impact of overpopulation: the ethics of procreation (London and New York, NY: Routledge, 2020). 67.  For an interesting analysis of procreation’s inherent conflicts of interests between parent and child specifically, see Rivka Weinberg, The risk of a lifetime: How, when, and why procreation may be permissible (Oxford: Oxford University Press, 2016).

CHAPTER 26

The Ethics of Circumcision Brian D. Earp

W

hy have a chapter on circumcision in a handbook about bioethics? To North American readers, especially those raised in the United States, the topic may seem a puzzling choice: routine infant penile circumcision—that is, partial or total removal of the foreskin of the penis—is a majority birth custom in U.S. culture, occurring over a million times per year.1 The surgery is mostly carried out by doctors on babies that have been categorized as male at birth (typically due to the presence of a readily identifiable penis) before they leave the hospital. It’s widely seen as a “little snip”2 that doesn’t result in any major harm—a simple, lowrisk procedure that removes a bit of “excess skin,” both to enhance the esthetic appearance of the penis and to make it easier to wash and avoid infection. It is often assumed that future sexual partners will prefer a circumcised penis, and that “uncircumcised” youths may face teasing in the locker room.3 Besides, in most cases, at least one of the child’s parents or guardians will also have been circumcised shortly after birth, in accordance with the dominant norm. Perhaps children will be less confused, as they learn about their bodies, if their genitals have been surgically shaped so that they “look like” one of their parents “down there.”4 Since there are several potential benefits, the thinking goes, both physical and psychosocial, and not too many serious harms to worry about—unless the surgery is “botched”5—why would circumcision

be ethically controversial? Plausibly, if the practice were unethical in some way, it would not be performed on a routine basis by licensed physicians in one of the most medically advanced countries in the world. Besides, it is (also) an important religious custom for practicing Jews and Muslims. It might, therefore, be seen as anti-Semitic or Islamophobic even to suggest it could be morally wrong.6 Better to leave well enough alone, this perspective concludes, and turn our attention to more pressing issues.

OT H E R P E R S P E C T I V E S Meanwhile, readers from Europe, Central or South America, Australasia, and much of Asia may also be puzzled about the need for a chapter on circumcision, but for a different reason. In these parts of the world, the vast majority of babies categorized as male at birth, just like those categorized as female at birth, do not have their genitals surgically modified before being sent home from the hospital.7 Instead, children grow up and spend the rest of their lives with their sexual organs “intact”—that is, surgically unmodified—and most would never think of having them cut or altered unless it were strictly necessary. In these contexts, it is, rather, the moral badness of excising any part of a child’s healthy sexual anatomy that is the default ethical position. 295

In these cultures, the penile foreskin is treated similarly to the labia minora, the latter of which, where joined at the top of the vulva, form the anatomically homologous clitoral foreskin or hood (see Box 1). Each of these genital structures is considered to be a valuable part of a person’s sexual embodiment: protective, erogenous tissue that usually should not be cut into, much less permanently removed, unless there is a medical emergency. Granted, like other parts of the body, male or female genital tissues can sometimes become irritated, inflamed, or infected—even cancerous. But doctors from non-circumcising cultures understand that these problems are either rare, or rarely serious, if one practices basic health and hygiene. Therefore, the mere possibility of future health problems involving the foreskin or labia is not typically seen as a legitimate reason to remove these tissues from someone who cannot consent.8

The child may, after all, grow up to prefer modes of disease prevention that are more effective, or less risky, than genital surgery. And if not, they will still have the option of surgery available for them to pursue on a consensual basis. By contrast, the inverse— the option of genital intactness for someone who was surgically altered without their consent—does not exist, and this might be regarded as an ethically significant asymmetry.9 In any case, if a health problem does arise relating to the penis or vulva, it can usually be safely and effectively treated (e.g., with a topical cream or antibiotics) with no loss of tissue nor risk of surgical complications.10 A small minority of individuals, for personal reasons, may end up pursuing a non-therapeutic genital procedure—be it penile circumcision, clitoral hood reduction,11 or elective labiaplasty—in line with their preferences and values. But it is seen as obvious, in these cultures, that this should be an elective decision

BOX 1. THE FORESKIN. 12 The genital foreskin or prepuce, its formal name, is a protective skin covering or sheath-like tissue that exists in all primates, including humans of both sexes. Thus, with rare exceptions, not only males but also females are born with a foreskin (the female foreskin is also known as the clitoral prepuce or hood). In both cases, the foreskin shields the head of the phallus—the clitoral or penile glans—from abrasion, while also housing many specialized nerve endings. When the individual becomes sexually active, these nerve endings can, when appropriately stimulated, contribute to feelings of sexual pleasure. The foreskin is not a discrete, separate structure, but is either continuous with the labia minora (in females) or the penile shaft skin (in males). It evolved to function with the rest of the genital organ of which it is an integrated part. For example, the foreskin covers and protects the head of the penis or clitoris, except when it is retracted—for example, during a state of arousal—much as the eyelid covers and protects the eye unless it needs to be exposed. In each case, the covering structure preserves the softness and sensitivity of the part that is kept mostly internal, while forming a barrier against potential contaminants. The penile foreskin is relatively large: it has a mean reported surface area of about 30 to 50 square centimeters in adults, which is roughly the size of a credit card. It is a highly elastic, self-lubricating tissue that may glide back and forth during sex or masturbation—reciprocally to the movement of the shaft—and it is the most sensitive part of the penis to warmth and light touch. The clitoral foreskin, while smaller in absolute terms, is a significant sensory platform in its own right. As an extension of the similarly touch-sensitive, stretchable, self-lubricating labia minora, it plays an important role in female sexual enjoyment. For example, it allows the head of the clitoris to be stimulated through its own skin covering, rather than by direct contact (which can be unpleasant and even painful). Regardless of sex, the foreskin exhibits considerable anatomical variation between individuals: some have a larger foreskin, while others have a smaller one; some have an acutely sensitive foreskin, while the foreskin of others may be less sensitive, and so forth. In the case of an infant, it is not possible to tell precisely how much their foreskin will contribute to their future sexual enjoyment—and thus what they stand to lose, experientially, if it is removed. Nevertheless, most sexually active persons with genital foreskins, male or female, appear to place a positive value on the tissue.

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made by a fully informed, sufficiently autonomous person about their own body, rather than something imposed on a non-consenting child. The fact that genital cutting of children is practiced within certain religious communities only adds to the complexity of the issue. Finally, in some parts of Africa, South and Southeast Asia, and the Middle East, both males and females have their genitals cut for cultural reasons, and this is seen as only right and proper.13 Often, the cutting occurs in the context of a rite of passage into adulthood, where girls, as much as boys, are expected to show courage and stoicism in the face of pain, thereby demonstrating their maturity.14 However, there is much variation: depending on the specific culture and which forms of cutting it has adopted, the ritual

for either sex can happen anywhere from infancy to late adolescence; it may or may not be associated with a religion, such as Islam or Christianity; it can happen in a big-city hospital or a rural village, by a trained medic or traditional cutter; and either the male or female procedure may be more risky or severe (see Box 2 for more information). Parents in these cultures understand that their children will experience pain from the genital cutting and throughout the process of recovery. The parents themselves will have gone through a similar ordeal when they were younger. But they commonly believe that this will prepare the child for the harsh reality of adult life: the pain of childbirth, for example, or fighting in war.15 They also know that their child, whether male or female, will not be considered

BOX 2. VARIETIES OF GENITAL CUT TING: A CROSS-CULTUR AL PERSPECTIVE. 16 Both male and female genital cutting fall on a wide spectrum across cultures, with variable implications for health and sexuality. In parts of South and Southeast Asia, for example, primarily Muslim doctors or nurses perform circumcision in a gender-inclusive manner, seeing the procedure as both hygienic and religiously beneficial for children of either sex. In these contexts, the cutting is often done in a modern clinical environment. The typical practice for girls involves a “nick, abrasion, piercing or small cut restricted to the female foreskin” (see Box 1), often without removal of tissue but aiming to draw a ceremonial drop of blood. In many cases, the cut heals quickly, resulting in no visible change to the vulva. The practice for boys is more substantial: assuming a typical male circumcision, it involves the removal of most or all of the penile foreskin—about a third of the skin system of the penis—resulting in a larger wound that takes longer to heal and often leaving a permanent scar. In either case, the child may experience psychological distress from having their genitals exposed and pierced with a sharp object, typically while being held down by one or more adults, irrespective of how much tissue is removed. Different forms of genital cutting are practiced in other cultures. In some parts of northeast Africa, for instance, the boys may be traditionally circumcised while the girls are subjected to infibulation: a much more severe procedure that involves cutting the labia minora and suturing the vulva, with or without also cutting the clitoral glans, leaving only a small outlet for urine and menstrual blood. This is typically excruciating and can be highly traumatic; and it carries a well-documented risk of multiple complications, many of which can be serious or lifelong. Meanwhile, in parts of southern Africa, the girls do not undergo genital cutting, while the ritual for boys is characteristically harsh: in some groups, there is an extremely high rate of infection, accidental penile amputation, and even death—sometimes by suicide—following the male circumcision ritual, in which multiple boys may be cut with the same septic knife. In both sexes, the physical risks of genital cutting vary in both likelihood and magnitude depending on multiple factors: the individual anatomy of the child, which specific tissues are damaged or removed, the severity of the cutting, the surface area of the resulting wound, and—most significantly—the extent to which the practice has been medicalized. This refers to the process by which a non-medical practice, like genital cutting, gets gradually taken over by health care professionals who may use, for example, sterilized instruments and pain control. Often this is done in the name of harm reduction, although it can also cause the practice to be seen as safer and more “modern,” as a result of which it becomes further entrenched. For that reason, among those who believe that medically unnecessary genital cutting of a child violates the child’s human rights, medicalization is sometimes opposed. Instead, it is argued that doctors and others should seek to stop the cutting from happening altogether.

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eligible for marriage and other adult privileges until they are symbolically “purified,” or prove their ability to withstand hardship as a costly signal of their commitment to the group.17 Finally, they know that “uncircumcised” children, both girls and boys, risk bullying or other mistreatment from their circumcised peers unless they succumb to the practice.18 In such a context, these parents think, to fail to have their sons or daughters cut in the socially prescribed manner would put them at risk of serious social harm. For example, they may face rejection from potential sexual partners or be ostracized from the wider community. In many of these contexts, such fears are legitimate for children of either sex. This can create a collective action problem whereby it is difficult for any single family to stop the practice of child genital cutting— even if they wanted to—without putting their child at a significant disadvantage. This is structurally similar to the problem of Chinese foot binding that once persisted for many centuries.19 However, there is at least one striking difference between Chinese foot binding and genital cutting, in that foot binding was performed in a sex-discriminatory manner, only on girls to make them eligible for marriage. By contrast, depending on the culture, the practice of child genital cutting as a prerequisite for marriage or other social goods is almost always imposed either on girls and boys alike, or only on boys. There are virtually no cultures in which genital cutting is a socially enforced custom only for girls.20

TH REE PAT TER NS To summarize, there are three main patterns of non-therapeutic (that is, medically unnecessary) genital cutting of children carried out across the globe. In the first pattern, the dominant culture endorses routine or religious genital cutting only of children categorized as male at birth and subsequently raised as boys, as in the United States, Israel, Afghanistan, or Saudi Arabia, for instance. In these cultures, children categorized as female at birth and raised as girls are ineligible for genital cutting, or may be seen as deserving protection from it.21 298 

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In the second pattern, neither boys nor girls of the dominant culture have their genitals cut, unless there is a strict medical indication—which in these contexts is rare. This is the prevailing pattern throughout Europe and indeed most other parts of the world. In the third pattern, both boys and girls of the dominant culture have their genitals cut for non-medical reasons, for example, in the context of a rite of passage or religious initiation. Typically, this occurs around puberty, but the timing ranges from right after birth to before marriage. In this chapter, I present a moral argument in favor of the second, “European” pattern, both as a matter of ethics and gender equality. I do not discuss legal implications. In other words, I argue that, morally speaking, neither boys nor girls who are too young to consent should have their genitals cut— to any extent—unless it is medically necessary to do so. The alternative, from a gender equality perspective, would be to argue that both boys and girls should have their genitals cut on an equal basis, for example, by a doctor using sterile instruments. But from an ethical perspective, I argue, this would not be acceptable. Nevertheless, it is a real concern. In fact, a growing number of bioethicists and legal scholars have argued in recent years that since medically unnecessary, non-consensual male genital cutting is currently permitted—even in so-called Western countries that purport to uphold children’s rights—it is discriminatory not to allow medically unnecessary non-consensual, female genital cutting in the same countries, as long as it is no more harmful than the male forms of cutting that are currently allowed.22 In practical terms, these scholars argue that it should be legal to cut off parts of a girl’s healthy labia or clitoral hood without her consent, and that it should be considered ethical for doctors to do this—even without a valid medical diagnosis—if the parents request it for cultural or religious reasons. As one prominent scholar has put it, “If the practice is legal for the gander, why should it be banned for the goose?”23 I argue for the opposite moral position. I claim that all children who are insufficiently mature to give their own morally valid consent should be protected

from genital cutting that is not medically necessary— no matter how harmful or harmless someone else judges the cutting to be.24 In other words, as I have stated elsewhere, “Ganders and geese may do as they please when it comes to interventions into their intimate anatomy. Goslings, by contrast, should be protected from medically unnecessary genital cutting until they are capable of making their own decision.”25 Importantly, my argument does not only apply to children (“goslings” in this analogy) who are what is known as endosex—that is, children whose sexual anatomy is judged to fall within normative standards for binary male or female classification according to the criteria used by biologists.26 Rather, it applies just as much to children who are intersex—that is, children whose sexual anatomy is judged to depart from those normative standards (e.g., by having a mix of features that are typical for males and females due to different genetics or processes of growth and development in the womb).27 In most settings, children with intersex traits will be categorized as either female or male, even in cases of uncertainty. Often, this decision will be reinforced by risky or repeated surgical interventions into their genitalia to try to approximate a binary endosex appearance. Although most of these children grow up to identify as members of the sex category to which they were assigned—and with their associated gender of rearing—some of them come to feel that their sex assignment was mistaken or incompatible with their gendered self-conception. 28 However, regardless of a person’s sex characteristics or gender identity, I argue that the decision about whether a sharp instrument should be brought into contact with one’s sexual anatomy, much less used to excise healthy tissue from one’s genitals, should be up to the affected person when they can make their own informed decision (unless a medical emergency requires immediate intervention). In the course of making this argument, I hope to guide the reader through some of the main points of scholarly disagreement between defenders and critics of medically unnecessary child genital cutting.

A P O I N T O N L A N G UAG E A N D DE FI N I N G T E R M S Before getting into these arguments, I would like to raise a point about language. I was originally invited to write a chapter on “male circumcision,” as the practice is commonly referred to, but I have not used that phrase in the chapter so far. I do employ the terms “male” and “female” to refer to culturally sexed body parts,29 and “boy/man” or “girl/woman” to refer to presumed or actual occupants of socially recognized gender roles.30 Indeed, genital cutting practices are often key cultural mechanisms by which children become dichotomously “gendered” in this social sense.31 But I have tried to avoid using gender/ sex language when making certain anatomical distinctions. There are several reasons for this. First, it reinforces the male/female binary for body classification, which is exclusionary toward people with intersex traits (many of whom also have foreskins). Indeed, intersex children are regularly subjected to medically unnecessary genital surgeries—some of them far more invasive than circumcision—in an attempt to force their otherwise healthy, functional anatomy to conform to this cultural binary.32 Notably, these surgeries take place even in European and other cultures where neither boys nor girls (who are not intersex) undergo genital cutting. And yet, the consequences of intersex genital surgeries, including nerve damage, scarring, numbness, recurring infections, and other common complications, have been devastating for many intersex people.33 Second, the ethical arguments I make in this chapter rely on principles, such as informed consent, bodily integrity, human rights, and sexual autonomy, that apply to all humans regardless of their particular sex traits or gender identification. Indeed, to apply these principles selectively based solely on a person’s sex or gender would be an unethical—and if put into practice, potentially illegal—form of discrimination. Third, some people who undergo “male” circumcision—that is, removal of the penile foreskin—do

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not identify as boys or men in terms of their gendered self-conception.34 Indeed, in a country such as Israel or the United States, the vast majority of transgender women (and a large proportion of non-binary individuals) will have had a significant part of their genitals removed soon after birth, through routine or religious penile circumcision. Not only may this affect these women’s sense of bodily or sexual integrity, upon discovering what happened to them when they were infants (recall that the penile foreskin is anatomically analogous to, and shares many properties with, the labia and clitoral hood); but it may also pose a practical problem for the subset of these women who pursue certain gender-affirming surgeries.35 This point is worth dwelling on for a moment. Although many trans women neither need nor desire surgery to create a neovagina in order to feel fully themselves and/or comfortable in their own bodies, some do, and for them, the surgery may be necessary for their mental health or well-being.36 The most common surgery for this purpose is a genital inversion technique that makes ample use of the penile foreskin to create a vaginal lining and/or labia minora and clitoral hood.37 The foreskin is ideal for this purpose because it is a highly elastic, hairless, self-lubricating, richly innervated genital tissue (see Box 1) that comes equipped with its own blood supply.38 If the foreskin has been removed through circumcision, however, the surgeon must resort to less-accessible shaft skin from farther down the penis or even skin grafts from other parts of the body. (The same problem, incidentally, applies to burn victims who have been previously circumcised, who would otherwise have had their own foreskins available as donor tissue.)39 In short, it is not only cisgender (i.e., non-transgender) boys and men, but also transgender girls and women, along with some non-binary and genderqueer individuals, who are affected by penile circumcision. I therefore aim to use anatomically accurate language (i.e., “penile circumcision”) rather than sex/ gender-coded language (i.e., “male circumcision”). Finally, because my argument will rest on the notion of medical necessity, I need to define the term. I consider an intervention into a bodily state to be medically necessary when (1) the bodily state, 300 

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if left unmodified, poses a serious, time-sensitive threat to the person’s well-being (typically due to a functional impairment in an associated somatic process); and (2) the intervention, as performed without delay, is the least harmful feasible means of changing the bodily state to one that alleviates the threat.40 All other interventions are medically unnecessary according to this conception. It is important to stress that the concept of medical necessity invoked here is meaningfully different from the concept of being (merely) “medically beneficial.” The latter concept is often used to describe penile circumcision in the United States41 (although not in Europe, Australasia, and so on).42 It picks out a weaker standard for authorizing a proposed intervention, according to which it is morally permissible to infringe upon the bodily integrity of a non-consenting individual, just so long as the expected health-related benefits of the infringement outweigh the expected health-related harms. In the following sections, I am going to explain why such “weighing” of expected health-related benefits and harms is not an appropriate mechanism for evaluating the permissibility of non-consensual genital cutting.

B E N E FI TS A N D H A R M S The usual way to argue against medically unnecessary genital cutting—especially if it is non-consensual—is to argue that it crosses a threshold of net physical harmfulness that makes it morally impermissible.43 Otherwise, if a practice is deemed to fall within what is sometimes called the “zone of parental discretion,”44 it is assumed that parents should be free to make decisions about what happens to their children’s bodies. By contrast, I am going to argue that it is always morally impermissible for an adult to touch, cut, or otherwise interfere with a child’s private anatomy— regardless of how physically harmful, harmless, or even beneficial the adult judges the interference to be. The only exception for interfering with a non-consenting person’s genitalia, I argue, is for interventions that are medically necessary and so cannot, by any

reasonable standard, ethically be delayed until the person is in a position to consent. In other words, I suggest, we should not look at a non-consenting person’s (healthy) sexual anatomy, even if this person is our child, and ask, “What level of net harm or benefit do I expect will result from surgically removing part of this person’s genitalia?” Rather, we should think: “Given that this person does not have any medical problems affecting their sexual anatomy, much less any that would justify exposing that part of their body to surgical risk, I am obligated to protect them from any such unnecessary genital operations until they can make their own decision.” One significant problem with the “weighing” approach is that, in the case of non-consensual genital cutting, the person(s) doing the weighing are not the same as the one who will be permanently affected by the procedure if it occurs. The fact that someone is not currently able to make an informed decision about their own sexual anatomy does not, in general, license others—even one’s parents—to make such decisions for them. Rather, as I will argue, the default position when it comes to other people’s sexual anatomy is not to interfere.45 It is also hard to know what kinds of benefits and harms we should factor into our analysis. For example, consider a child who has had part of their genitals removed based on their parents’ religious or cultural beliefs. This child may grow up to feel that the genital modification has brought them closer to God or their community. This would be an incalculable benefit to the child and might seem to justify modifying their genitals without first obtaining their consent. That way, there could be less risk of the child feeling alienated from God or their community during the period between birth and becoming sufficiently mature to opt for a consensual genital modification themselves.46 However, the same child might grow up to become an atheist or otherwise dissociate from the religious or cultural community into which they were born or subsequently raised. Indeed, this is increasingly common in contemporary, multicultural societies, in which people move from place to place, have access to the Internet, and in general are exposed to

different points of view.47 This child will, by contrast, have had one of their most intimate body parts irreversibly altered, on account of a controversial set of beliefs they do not share. Perhaps they have a scar on their sexual organ that daily reminds them of this fact, which they find to be disturbing or distressing. This could be an incalculable harm to the child, who may experience what happened to their penis or vulva— when they were in a highly vulnerable condition—as a violation of their bodily or sexual integrity.48 That these contrasting potential outcomes are not easily measurable scientifically does not, of course, mean that may not be of the utmost importance to a person’s sense of dignity or overall well-being. Nevertheless, what these examples show is that whether a given genital modification is ultimately harmful or beneficial, on balance, will depend on the attitudes, beliefs, or preferences of the genitally modified person in the context of their social environment.49 It cannot be assumed that they will adopt the beliefs or values of the majority within that environment; nor can the concepts of harm or benefit be reduced to expected “physical” outcomes. This leads to another problem with “weighing” harms and benefits. If we look at the entire circumstances of an individual’s life, we may find that even a highly invasive, risky, and physically damaging genital operation, such as infibulation (see Box 2) could, given certain background social conditions, end up being net beneficial to the child (or as it might be said, “in her best interests”). For example, infibulation could be a net benefit to someone who believes, as is common in practicing cultures, that infibulation is necessary to become a proper woman; or if it makes her feel connected to her ancestors; if it allows her access to marriage and other valued cultural institutions from which she would otherwise be excluded; if it helps her avoid teasing and bullying from her infibulated peers, and so forth.50 Indeed, any bodily harm inflicted on a child, no matter how physically injurious, can in principle be justified by a “best interests” analysis if the social benefits of the injury—or social costs of keeping one’s body intact—are sufficiently great. If you add potential metaphysical benefits or costs, such as might be T he E thics of C i r c u mcision 

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associated with being perceived to follow or violate the will of a divine entity, the possibility that even a severe bodily injury could be in the overall “best interests” of a child (including their spiritual interests, to put it that way) is increased. What this shows is that parental judgments of the child’s best interests, based invariably on the parents’ own metaphysical beliefs and/or the social norms of their chosen or inherited community, cannot serve as a moral basis for determining the permissibility of subjecting their child to a medically unnecessary genital operation. Rather, such a “best interests” approach assumes the permissibility of the genital surgery, otherwise the parents would not request it in the first place (unless they were, e.g., sadists or psychopaths; but we can assume such a situation is rare). Indeed, even setting aside purported spiritual or religious benefits, insofar as certain very real, measurable social benefits and harms are included in such a calculus, the non-consensual removal of healthy tissue from a child’s genitals may in fact be justified on this basis. The reason for this is simple. Any society that endorses or perpetuates a set of cultural norms or religious precepts according to which a child’s overall well-being is, functionally speaking, dependent on a non-consensual genital surgery, can, by that very fact, make the surgery “in their best interests.” For example, if community members or religious leaders choose to exclude, punish, or ostracize a child who has not had the requisite tissue excised, non-consensually, from their genitalia; or if they choose to tolerate the exclusion, punishment, or ostracization of this child, it may well be in the best interests of the child to have that part of their sexual anatomy removed. Moreover, it could even be negligent of the child’s parents not to authorize the medically unnecessary genital surgery for their child at the first relevant opportunity. But this does not mean that such a genital surgery does not seriously wrong the child or violate their rights, for reasons I will outline in the following sections. Rather, it would imply that the society has a strong moral reason to change some of its discriminatory norms and practices. Rather than imposing unbearable social harms or costs on children whose parents do not want to participate in an institution 302 

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requiring that children be genitally injured, societies should promote the unconditional love and acceptance of all children by community members—whether or not those children’s genitalia have been altered.

A DO P T I N G A M E DI C A L FO C U S One potential solution to the problems highlighted in the previous section might be to consider the moral permissibility of genital modification from the perspective of medical ethics. According to this approach, whatever we might think about the appropriateness of using a “best interests” standard from the standpoint of society at large, in a medical context, doctors are bound to follow a more demanding set of ethical principles, given their position of authority, the vulnerability of many patients within their care, and the special role they have been assigned by society to intervene in people’s bodies, sometimes in highly invasive ways. Obviously, a doctor cannot evaluate the metaphysical beliefs or cultural commitments of the parents of a child within their care, nor even make a particularly sophisticated judgment about the social benefits or harms to which a child may be exposed as a result of getting—or not getting—a genital surgery. Those matters are beyond a doctor’s expertise. What a doctor should be able to judge, however, are the medical implications of performing, or not performing, a surgery. And so, perhaps, we should consider the ethics of genital modification from the perspective of strictly health-related outcomes. In other words, perhaps we can come to an agreement as to the medical benefits and harms of child genital surgery, and decide its permissibility on that basis. Suppose that we weigh the potential health-related benefits against the potential health-related harms, and we conclude that the potential benefits outweigh the potential harms. Would this make it permissible for a doctor to perform a genital surgery that does not pass the “medically necessary” threshold—defined previously—on someone who cannot consent? I maintain that the answer is no. As I will argue, it is always impermissible to interfere with, much less

perform surgery on, the sexual anatomy of someone who cannot consent, unless it is medically necessary to do so. I will make that argument in a subsequent section. But suppose that for now, we pursue this idea that a (merely) “medically beneficial” standard might in fact justify such a surgery. Immediately a problem arises: Who, again, should do the weighing here, and what are the weights they should assign? As it turns out, coming up with a ratio of benefits to harms in this area—even if we restrict ourselves to considering only the physical health of the individual—depends on numerous contested factors. This makes universal agreement, even among similarly qualified medical experts, hard to come by.51 For example, the American Academy of Pediatrics asserted in 2012 that the health benefits of newborn penile circumcision outweigh the risks,52 by which they meant the known or estimated risk, based on limited data, of primarily short-term surgical complications. Their policy statement was strongly criticized by international medical experts.53 In 2015 the Canadian Pediatric Society, looking at the same medical literature, concluded that the health benefits and risks were “closely balanced.”54 By 2020 the Danish Medical Association concluded that there was no compelling evidence of a “clear health benefit” for circumcision prior to sexual debut.55 Part of the problem is the generally poor quality of the scientific evidence. Even the strongest available evidence is far from conclusive. Consider the claim, based on data from three randomized clinical trials, that adult, voluntary circumcision in some African countries can reduce the risk of female-to-male transmission of HIV.56 Because the “treatment” condition of these trials involved undergoing a genital surgery and having a substantial portion of one’s penile skin removed, it was not possible to conceal this from participants. Thus, the most basic requirements of a high-quality randomized trial—namely, that it be “double blind” (i.e., neither the participants nor the researchers know what condition the participant has been assigned to until after data collection) and placebo controlled (i.e., everything except the proposed causal mechanism is held constant between the two conditions)—was not even possible.

Nevertheless, there is evidence from a fourth trial that circumcision can increase the risk of maleto-female transmission of HIV by roughly the same amount.57 This would suggest that women—who are already more vulnerable to HIV and AIDS in many African countries—may be put at risk by the penile circumcision of their partners.58 In any case, both of these findings stemmed from epidemiological environments with very high rates of heterosexually transmitted HIV and a low baseline prevalence of penile circumcision. Thus, neither finding, even if it were compelling on its own terms, could be simply copied and pasted onto non-voluntary circumcision of children in a country such as the United States.59 And that is the best-case scenario for causal evidence. Much of the rest of the health claims that are commonly raised for circumcision are based on correlational studies with messy outcomes and inadequate control of confounders.60 No wonder scientists from different countries disagree. But even so: let us suppose, for the sake of argument, that scientists from the United States, Canada, Denmark, and elsewhere could at least all agree on the health-based implications of the data. Suppose they agreed on which studies were well-conducted, and what those studies basically showed. Still, they would not be able to reach an “objective” consensus about the weights to assign to benefits or risks.

A S S I G N I N G WE I G H TS To see this, consider the loss of the foreskin itself, a “risk” of circumcision that has close to a 100 percent chance of occurring. (Here we are talking about the penile foreskin, but the same argument applies to the clitoral foreskin or labia.) How much weight should be given to this outcome, and in what direction? If you place a positive value on having a foreskin, as most people who have one seem to do, then its loss is a harm to you even if there are no (other) surgical complications.61 The likelihood of this loss, as noted, is close to 100 percent, and the magnitude (degree of badness or disvalue) of the loss scales with the degree to which you value the tissue. If you value it a lot, T he E thics of C i r c u mcision 

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you will be greatly harmed by circumcision; if you value it a little, you will be less harmed—again, setting aside the risk of other complications. If, by contrast, you place a net negative value on having a foreskin, as is apparently uncommon among those who have one, then its removal will count as a benefit to you. Perhaps this is one reason why people who were circumcised in infancy come to believe that the foreskin is “just a bit of worthless skin.” It helps maintain the subjective disvalue they place on having a foreskin, which is a state they cannot physically be in.62 By contrast, someone who was not circumcised in childhood always has, as mentioned, the option of surgery available to them, so there would be less of a need—psychologically speaking—to place a negative value on having a foreskin.63 As a more general matter, the overall ratio of benefits to harms for penile circumcision, or any other form of genital cutting—and this remains true even if we focus only on health-related benefits or harms— will depend on such factors as the following: the specific weights assigned to the potential outcomes of the intervention, given, among other things, (a) the subjective value to the individual of the body parts that may be affected, (b) the individual’s tolerance for different kinds or degrees of risk to which those body parts may be exposed, and (c) any preferences the individual may have for alternative (e.g., less invasive or risky) means of pursuing the intended health-related benefits.64 In other words, there is no objective, purely scientific, or other supposedly “value-free” way of deriving such a ratio. No committee or panel of medical experts can decide the question for everyone else. To see this point by way of another example, consider the claim that routine penile circumcision in infants reduces their risk of getting a urinary tract infection (UTI). These data are contested, because there is evidence that UTIs are misdiagnosed more frequently in children with intact penises than in children with circumcised penises;65 but let us just assume the claim is true. According to the American Academy of Pediatrics, which has the 304 

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most favorable stance toward penile circumcision of all comparable medical bodies, it would take more than 100 circumcisions to prevent a single UTI, given the low absolute risk of UTIs in children with penises regardless of circumcision status.66 That means that more than 100 children would have to be exposed to surgical risk on their genitals, with the intended outcome of removing healthy tissue, in order to prevent one (unknown, statistical) child from acquiring a UTI. But most UTIs are treatable non-surgically, with antibiotics, as they are in children with vulvas (who get them much more frequently).67 So how much weight should one put on this alleged health benefit—a reduced risk of getting a UTI? Different people may have different answers, but at least one reasonable answer would be “close to zero.” By contrast, we might think of a potential harm of circumcision that presumably everyone would agree is an unambiguous physical or health-related harm. Take the risk of accidentally amputating part or all of the penile glans. Typically, this will be more likely to happen in the case of a newborn circumcision than a later adult circumcision—when the organ has reached its full size—because the very small head of a baby’s penis can more easily be pulled into a circumcision clamp inadvertently without the operator being able to see this.68 The absolute risk of this happening is not known, but there are many case reports showing that it does sometimes happen even in “medicalized” settings.69 Let us assume the absolute risk is low—far less than 0.01 percent. What is the weight we should assign to this possible outcome of circumcision in evaluating potential benefits and harms? Again, different people will give different answers. But the degree of badness associated with having part or all of one’s penile head cut off—along with the risks associated with trying to address this problem, such as stopping the bleeding or undergoing corrective surgery—is presumably something that most people would regard as being extremely high. Importantly, the actual risk of a given outcome is calculated as the likelihood of its happening (in this case, stipulated to be low or rare) multiplied by the badness of the outcome, if it were to occur.70 Thus, it may be reasonable to place a great deal of weight on this potential outcome

of circumcision, even if it is unlikely to happen, due to the magnitude of badness that most people would associate with it if it occurred. Also, given a sufficiently large number of circumcisions—over a million in the United States each year—even relatively unlikely surgical complications are bound to happen in some individuals, who may be affected for the rest of their lives. Although this may be an acceptable risk for medically necessary or consensual surgeries, it is harder to accept, from an ethical perspective, for surgeries that are neither medically necessary nor consensual.71

H EA LTH BE NE F I TS V E R SU S R I SK S Now consider that virtually all of the statistical health benefits attributed to non-consensual penile circumcision (primarily, a reduced risk of various infections or diseases) can be achieved by means that do not involve genital surgery, both in terms of prevention and treatment.72 These less risky, non-surgical alternatives do not require the loss of any tissue that a person might reasonably wish to experience intact. For example, regularly washing the genitals with mild soap and water, practicing safer sex strategies when one becomes sexually active, using the appropriate medications for treatment if a health problem does occur, and so on. Recall that we are assigning weights to future, potential health benefits that have been attributed to a surgical procedure that itself necessarily introduces risk: in this case, risk that is concentrated on a part of the body that most people try especially hard to shield from risk throughout their lives. This proposed surgery is to be performed on someone who does not currently face any health problem relating to the relevant body part (and who is at no more risk than average of ever developing such a potential problem, relative to other people with intact genitalia); and this surgery is designed to remove healthy, functional tissue from that body part (see Box 1). All of this is to happen without the informed consent of the person who will live with the consequences. In such a situation, the health benefits in question are only probabilistic (they may not apply to

any individual person; this depends mostly on their future behavior) and these benefits can, moreover, be achieved more safely by alternative means that do not involve non-consensual surgery. What should we conclude? One reasonable conclusion is that we should assign very little weight—perhaps zero— to any such health benefit (specifically, as attained through non-consensual surgery). By contrast, many of the risks of penile circumcision—potential excision of too much tissue, pathological narrowing of the urethral opening (meatal stenosis), keloid scar formation, development of skin tags or bridges, uncomfortable erections due to tightness of skin, and so forth—are not primarily risks to which the individual would be exposed anyway, that is, without genital surgery.73 Rather, it is the surgery itself that exposes them to these risks.74 Therefore, when attempting to balance the potential benefits and harms of circumcision, it may seem reasonable to assign considerable weight to any such risks, even if they are unlikely to happen in absolute terms (assuming a qualified operator). This is because the risks are surgery-specific and can have highly negative consequences for a person’s well-being, some of which may be lifelong. In short, the potential health-related benefits of non-consensual penile circumcision can almost all be achieved without circumcision (or with consensual circumcision). Therefore, very little, or perhaps no, weight should be assigned to the prospect of attaining those benefits through non-consensual surgery. By contrast, the potential health-related harms of non-consensual penile circumcision are not typically harms to which the individual would otherwise be exposed. Therefore, plausibly, significant weight should be assigned to the risk of those harms, as they stem from non-consensual surgery.

TIMING As a final consideration, it is sometimes argued that it is less risky, medically speaking, to perform a penile circumcision in infancy compared to later in life, so that delaying the surgery until the person can T he E thics of C i r c u mcision 

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make their own decision is effectively to raise the cost (in terms of potential physical harms) of deciding to be circumcised. Thus, it is not as simple as saying that the circumcision decision can be left to the affected individual.75 There are several problems with this argument. First, it assumes that the circumcision will happen either way, whereas in reality, the vast majority of non-circumcised persons do not go on to choose circumcision, even in some cultures where circumcision is a dominant social norm.76 And yet, clearly, non-circumcision is even less medically risky than infant circumcision. Second, any number of surgeries—for example, earlobe removal—might be less medically risky in infancy compared to later in life, but it must first be established that it is ethical to perform the surgery without the affected person’s own consent. As the example of earlobe removal suggests, however, it is not normally permissible to surgically remove normal, healthy body parts from someone who cannot consent, irrespective of the relative risk profile that may be associated with performing the surgery at various different times of life. Third, even if one accepts the commonly asserted lower risk for infant circumcision (about a 1.5% risk of complications according to a systematic review),77 this risk is not very much lower, in absolute terms, than the risk that has been estimated for adult, consensual circumcision: between 1.7 and 3.8 percent in the large, randomized trials mentioned earlier.78 Even according to one of the most adamant proponents of infant circumcision, “virtually all” of the complications observed in the adult trials were “mild or moderate and were effectively treated.”79 But if that is the case, the allegedly higher risk of adult complications should be assigned very little moral weight: (a) the absolute likelihood of such complications is not much higher, if higher at all, than the likelihood of complications estimated for infant circumcision; and (b) almost all of the adult complications that have been documented to occur are reportedly minor and treatable. In either case, the risk of complications is asserted to be “low” by proponents of circumcision. 306 

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A low risk divided by any amount is still a low risk. Thus, the relatively lower risk attributed to infant circumcision, even if one accepts this contestable empirical claim,80 is not of any great ethical significance (given the low absolute risk either way), whereas the inability of the infant to consent to the permanent alteration of their sexual anatomy is, on any view, of considerable ethical significance.

SUMMING UP In the previous sections, I argued that assigning weights to purported benefits or risks of penile circumcision is a highly subjective process, even if we attempt to restrict ourselves to the “purely” medical domain. The ultimate value of any trade-offs will be primarily rooted in the beliefs and attitudes of the affected person.81 Given the extraordinary unreliability of attempting to predict a person’s future values many years ahead of time, especially with respect to something as potentially idiosyncratic as how they feel about their own sexual anatomy, this might suggest that the decision about whether to have their healthy genitalia altered should be left to them. In any case, different evaluators will reach different conclusions about the precise nature of the various trade-offs between potential or actual benefits or harms. That is why evaluating the ethics of circumcision in terms of a utilitarian medical calculus—exemplified by the “medically beneficial” standard—is not going to be up to the job. This does not mean that the standard is never appropriate for “proxy” medical decision-making for children. Indeed, the standard may well be appropriate for certain interventions into the body, where the benefits and harms are much easier to define and measure, such that there is very little disagreement among qualified experts as to what those definitions and measurements imply; for example, certain childhood vaccinations.82 But I suggest that “medically beneficial” is not an appropriate standard for evaluating the ethics of cutting or removing healthy genital tissue from a non-consenting person. This suggestion is based, in part, on the highly personal nature of the genitals and their special

significance to a person’s sense of self, sexuality, sexual identity, and self-esteem.83 Vaccinations do not raise similar issues. Indeed, if there were a vaccine, even a highly effective one, that could only be administered through a process that, for whatever reason, resulted in the permanent loss of one’s labia or clitoral hood, say, it would not be approved for use in non-consenting persons. As my colleagues and I have argued: If someone is capable of consenting to genital cutting but declines to do so, no type or degree of expected benefit, health-related or otherwise, can ethically justify the imposition of such cutting. If, by contrast, a person is not even capable of consenting due to a temporary lack of sufficient autonomy (e.g., an intoxicated adult or a young child), there are strong moral reasons in the absence of a relevant medical emergency to wait until the person acquires the capacity to make their own decision.84 Thus, I suggest, it is the informed consent of the affected person—not a subjective judgment of relative harmlessness made by a different party—that makes medically unnecessary genital cutting permissible as opposed to an impermissible bodily assault.85

C H ILDRE N AN D CO NSE NT Against the “consent” view I have just laid out, it might be said that very young children are not considered capable of autonomously consenting to any significant interference with their body; thus, their parent or guardian must provide “proxy” consent, not only to genital cutting, but to everything else. It is true that parents are rightly entrusted with making many decisions about their children’s bodies. However, the inability of a child to provide morally valid consent to various actions taken toward them does not entitle adults, even parents or doctors, to engage with the child’s body in whatever way they please. Consider the case of a doctor who performs a medical exam on a child’s healthy sexual anatomy,

knowing that the exam is not medically necessary for diagnosing or treating any problem. Or consider a parent who continues washing their child’s genitalia long after the child becomes capable of doing this on their own. Even if it is not (intended to be) explicitly sexual, something about an older person in a position of power touching the child’s genitals without needing to do so strikes many people as morally troubling. Indeed, it is the child’s heightened vulnerability—their inability to use consent as a shield against unwanted intrusions into their body, and in particular into their sexual anatomy—that makes it so important to set a baseline moral expectation: namely, that any adult contact with a child’s sexual anatomy is presumptively inappropriate. It only becomes appropriate under well-defined, limited conditions under which the avoidance of such contact (e.g., failing to change a child’s dirty diapers) would clearly be the greater wrong. Thus, I conclude, the only time it is permissible for an adult to touch, much less cut or remove tissue from, a child’s sexual anatomy, is when it is medically necessary to do so. Look at the matter this way. When it comes to engaging with the sexual anatomy of someone who is temporarily non-autonomous—because they are intoxicated, asleep, or a child—there are two types of error one can make. In the first type of error, one fails to engage with the person’s sexual anatomy when, in fact, the person would have consented to, and even benefitted from, the engagement with their genitalia if they had been able to consent at the time. There is some loss here—a “missed opportunity” to benefit the person—but in most situations, the harm done, if any, is relatively small. In the second type of error, one engages with a non-autonomous person’s sexual anatomy, perhaps believing that this is what the person would consent to (or benefit the most from), when in fact the person would not have consented to the engagement had they been able to do so. In contrast to the first type of error, the potential harms to the individual associated with the second type of error—for example, a feeling of having been sexually violated, or of having had one’s most important boundaries not respected—are enormous.86 T he E thics of C i r c u mcision 

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Thus, it is much worse, from a moral perspective, to commit the second type of error compared to the first. Given any uncertainty about what the person would consent to in such a situation, therefore, it is morally imperative to refrain from engaging with their sexual anatomy. It is better to make the first type of error rather than the second.

TH E SPE CIAL NE SS O F M E DIC AL N E CE SSI T Y Against the view I have just laid out, someone might argue that too much weight is being placed on the notion of “medical necessity” as a threshold criterion for ethically touching or cutting the genitals of a non-consenting person such as a child. Why not also make an exception for touching or cutting that is perceived (by some) to be “culturally necessary” or perhaps “religiously necessary,” for instance? In other words, what is ethically significant about medical necessity, in particular, such that it should serve as the only valid exception to an otherwise generally stated moral rule?87 This is my reply. It is widely appreciated that touching, cutting into, or removing healthy tissue from another person’s sexual anatomy is one of the most profound possible ways of engaging with their embodied personhood.88 After all, in many cultures, the genitalia in particular are constructed as being almost uniquely private or personal, tightly linked to one’s sense of self and self-esteem. Under ordinary conditions, engaging with someone’s sexual anatomy should only be done if the person has (1) given their consent, or (2) there is no other reasonable option from the perspective of respecting their right and (future) capacity to set and maintain important personal boundaries. In the case of medically necessary surgeries, there is no other reasonable option. Here is an explanation of why. In the context of proxy decision-making, especially on behalf of highly vulnerable others, we must recognize that the values and motivations that underpin medically necessary surgeries— for example, not dying prematurely or becoming 308 

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permanently disabled—are of a very special kind. They are: (1) effectively universal, regardless of one’s cultural background or metaphysical beliefs,89 (2) typically among the strongest values and motivations that people have, and (3) highly robust against possible changes in perspective upon exposure to other points of view. Thus, we can be practically certain, short of a signed advance directive or other similar document instructing otherwise, that the person would consent to the surgery if they were in a position to do so. It is this exceptionally high, warranted degree of certainty that the person would consent to a medically necessary procedure involving their genitalia (specifically, at a time prior to their being able to make their own decision) that entitles a proxy decision-maker to authorize something that would otherwise constitute a gross violation of the vulnerable person’s sexual embodiment.90 Just as a parent cannot validly authorize a sexual assault for their child—even if the assault is not likely to be physically harmful, even if the assailant is not personally motivated by sexual desire for the child, even if the child is unconscious or too young to remember, and even if it is sincerely believed that the child “wants it” or “will be grateful for it one day”—so too is it the case that a parent cannot validly authorize an even more extreme intrusion into their child’s sexual anatomy, again, regardless of the aforementioned factors (a fortiori). This is especially the case given that the intrusion in question—genital surgery—is in fact physically harmful (it is painful, involves the removal of healthy tissue, creates a wound that may become infected, and so on) and leaves a lasting mark on the body. Therefore, even if the child was unconscious during the procedure, or too young to remember it happening, they will still carry the evidence of what occurred on their personal anatomy for the rest of their lives.91 Now consider the values and motivations that underpin medically unnecessary surgeries: for example, subjective esthetic preferences, commitment to a strict gender binary, promotion of group solidarity, devotion to a particular god or gods, or a belief that it is okay to use non-consensual surgery to promote

someone’s health and hygiene when there are less risky and/or consensual methods that could effectively be used instead. These values and motivations are: (1) far from universal, varying greatly across cultural groups and metaphysical belief systems; (2) not necessarily among the strongest values and motivations that people have; and (3) highly susceptible to possible changes in perspective upon exposure to other points of view. What is significant about medical necessity, then— as the threshold condition for permissibly performing a non-consensual genital surgery—is that it represents a rare case in which we can be sufficiently (and justifiably) certain that a temporarily non-autonomous person would consent to the engagement with their sexual anatomy. And by the same token, we can be equally sure that to fail to engage with their sexual anatomy by means of surgery under these conditions of medical necessity—thereby exposing them to a significant risk of death or disability—would be the greater wrong. By contrast, genital surgeries that are perceived by some to be religiously or culturally necessary cannot clear that same high bar. Nor can surgeries that are claimed to be (merely) “medically beneficial.” Again, even if a person agreed that certain alleged religious, spiritual, or even health benefits were extremely impressive, they might still prefer to pursue them in a way that did not involve genital surgery. According to the analysis I have provided, that would be their right.

CO NCLUSION The upshot of this chapter is that we should not evaluate the ethics of child genital cutting by attempting a utilitarian calculus of benefits and harms. Invariably, parents who choose genital cutting for their children judge—however contestably—that the benefits, whether physical, psychosocial, or spiritual, outweigh the potential harms. And given certain background social conditions, they may in fact be correct, even in the case of genital procedures, such as infibulation in high-prevalence societies, that are widely held (outside of those societies) to violate human rights.

Of course, some parents might be persuaded to adjust their weights in light of new evidence—and some may even reverse the balance, coming to conclude that genital cutting is, after all, a net harm to their child, especially if social conditions change. But the whole approach is mistaken, I have argued. Instead, insofar as a society recognizes the concept of sexual assault, defined as the medically unnecessary, non-consensual touching or penetration of another’s sexual anatomy;92 and insofar as a society purports to have a special concern for protecting vulnerable persons, such as children, from such putative violations; and insofar as children within a society are socialized to believe that their genitalia should be “off limits” to non-consensual touching or penetration by more powerful others, apart from certain well-defined situations,93 there should an overwhelming presumption that it is a serious wrong to interfere with a child’s sexual anatomy in any way, unless it is medically necessary to do so. A surprising implication of this view is that routine newborn penile circumcision, as practiced in the United States, for instance, constitutes an extraordinary moral wrong playing out over a massive scale: as mentioned, over a million infants in that country undergo a medically unnecessary, non-consensual genital surgery each year. Moreover, this happens on an explicitly—that is, legally enshrined—sex-discriminatory basis: whereas no medically unnecessary genital cutting, however superficial, is legally permitted for children born with vulvas (endosex females), such cutting is widely practiced on non-consenting children born with penises (endosex males), as well as many children born with intersex traits.94 That such a grave moral problem, at such a significant scale, could be playing out on a daily basis in “modern” U.S. hospitals might seem to be unlikely or absurd. And yet, I have suggested that removing part of someone’s sexual anatomy without their consent— in the absence of relevant medical emergency—is an especially serious violation of their embodied personhood. If so, why do we not see thousands of supposed victims taking to the streets, protesting for their rights? I have two responses here. First, there has, in fact, been a substantial global protest movement, T he E thics of C i r c u mcision 

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led primarily by self-described victims or survivors, against medically unnecessary genital cutting of endosex males, endosex females, and intersex children for several decades.95 The protests against female genital cutting have, fortunately, been highly visible for quite some time now, although efforts to stop the practice in high-prevalence countries have not yet been sufficiently successful. Protests against intersex genital cutting, long sidelined or ignored, have recently become more visible.96 The protests against male genital cutting have been no less fervent, but there has not been as receptive an audience. According to patriarchal gender norms, male bodies are expected to be tough and strong; they are not regarded as being as vulnerable as female bodies, or as susceptible to harm or violation, even in infancy.97 And males who, once grown, discover what happened to them as infants, and who object to this and attempt to speak out, also find themselves in conflict with their prescribed gender role: expressing emotions such as sadness or grief, or sharing that one feels harmed or diminished, is prohibited by dominant norms of masculinity.98 Typically, in patriarchal cultures with a majority custom of penile circumcision, like the United States, males who speak out and assert that they feel harmed are often ridiculed, derided, and dismissed.99 The same, of course, is true of women who speak out in cultures with a majority custom of female genital cutting. However, in the latter case, the cultures in question do not have as much power to shape the global discourse, which allows the voices of the protesting minority to be amplified by sympathetic outsiders.100 Meanwhile, intersex people who have spoken out for decades have, until recently, received very little acknowledgement, much less adequate response. In the context of significant power asymmetries in which systemic violations of bodily or sexual integrity occur, these violations are almost always treated as normal by the more powerful group who enacts them, so that their status as violations can be hard to discern. An obvious example would be the legal invisibility of marital rape until recently.101 Children are the most vulnerable members of society, and it is therefore not surprising that widespread violations of their bodily 310 

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or sexual integrity might be carried out by more powerful actors—in this case, adults, including doctors— without these violations being widely recognized. That, of course, is the point of consciousness-raising. However, children are especially poorly positioned to engage in such activities, as they are taught to trust that whatever adults say, do, or authorize is presumptively appropriate or correct. And by the time most children become adults, if they have ever had an inkling that something wrong might have been done to them when they were little, it will typically be in their psychological best interests to “get over”—or form an adaptive preference for—whatever has already happened, given that it cannot be reversed.102 And so the violations continue. I am not arguing that there should, at this point in the cultural conversation, be criminal penalties applied to parents, doctors, or religious circumcisers who cannot be expected to know that parental “proxy” consent to medically unnecessary penile circumcision, just like parental “proxy” consent to medically unnecessary “female circumcision” (cutting of the clitoral foreskin), might not be legitimate.103 I am only here concerned with making moral arguments, not legal ones; my intention is to persuade, not to coerce. However, as I have just alluded to, it is already widely understood that parents in the United States and similar countries cannot validly provide “proxy” consent to medically unnecessary cutting of the labia minora or clitoral foreskin of a non-consenting child, even if the parents believe this is a religious obligation. Given this, it will not be long before the inconsistency of allowing non-consensual cutting of the penile foreskin (for any reason or no reason; currently none is required) will have to be dealt with more directly.104

N OT E S 1. U.S. Centers for Disease Control and Prevention, “Trends in Circumcision among Male Newborns Born in U.S. Hospitals: 1979–2010,” 2015, https://www.cdc.gov /nchs/data/hestat/circumcision_2013/circumcision_2013 .htm; World Population Review, “Circumcision by Country 2021,” ( 2021, https://worldpopulationreview.com/coun try-rankings/circumcision-by-country.

2. Peter Aggleton, “‘Just a Snip’? A Social History of Male Circumcision,” Reproductive Health Matters 15, no. 29 (2007): 15–21. 3.  In reality, individual preferences for surgically altered versus unaltered genitals in a potential mate vary widely, both within and between cultures that have different rates of genital modification. As for locker room teasing, a study on this question conducted in the American Midwest suggests that it is penile size, not circumcision status, that drives most penis-related locker-room teasing, and that teasing about non-circumcised penises, when it does occur, does not typically cause significant distress. Alexander E. Siobhan, Douglas W. Storm, and Christopher S. Cooper, “Teasing in School Locker Rooms Regarding Penile Appearance,” Journal of Urology 193, no. 3 (2015): 983–88, https://doi.org/10.1016/j.juro.2014.09.105. 4.  For example, in having a similar scar line or exposed penile head (the size, hairiness, and other aspects of the organ will typically differ either way). It is unknown how often children see and compare their penis to that of a parent, or whether non-circumcised children of circumcised parents do indeed notice the difference in foreskin status—or if they do, whether they find it confusing or detrimental to well-being. Nevertheless, this common concern about a same-sex parent–child “mismatch” in North America is one of the main reasons parents give, when surveyed, for why they authorize newborn penile circumcision: they think it should be “like father, like son.” The practice thus has a certain self-sustaining tendency over the generations. See Sarah E. Waldeck, “Social Norm Theory and Male Circumcision: Why Parents Circumcise,” The American Journal of Bioethics 3, no. 2 (2003): 56–57, https:// doi.org/10.1162/152651603766436261; Chris Rediger and Andries J. Muller, “Parents’ Rationale for Male Circumcision,” Canadian Family Physician 59, no. 2 (2013): e110–15, https://www.cfp.ca/content/59/2/e110. 5.  Annette Schröder et al., “Serious and Fatal Complications after Neonatal Circumcision,” European Urology Focus, 2021, online ahead of print, https://doi.org/10.1016/j.euf .2021.12.005. 6.  For important context on this worry, see Jenny Goodman, “Jewish Circumcision: An Alternative Perspective,” BJU International 83, no. S1 (1999): 22–27. 7.  WPR, “Circumcision by Country 2021” (World Population Review, 2021), https://worldpopulationreview. com/country-rankings/circumcision-by-country. 8.  Morten Frisch et al., “Cultural Bias in the AAP’s 2012 Technical Report and Policy Statement on Male Circumcision,” Pediatrics 131, no. 4 (2013): 796–800, https://doi .org/10.1542/peds.2012-2896; see also, for example, RACP, “Circumcision of Infant Males” (Royal Australasian College of Physicians, 2010), https://www.racp.edu.au/docs /default-source/advocacy-library/circumcision-of-in fant-males.pdf; BMA, “Nontherapeutic Male Circumcision (NTMC) of Children—Practical Guidance for Doctors”

(British Medical Association, 2019), https://www.bma.org .uk/advice/employment/ethics/children-and-young-peo ple/non-therapeutic-male-circumcision-of-children-ethics -toolkit/; Danish Medical Association, “Lægeforeningens Politik Vedrørende Omskæring Af Drengebørn Uden Medicinsk Indikation,” 2020, https://www.laeger.dk/oms kaering-af-drenge-uden-medicinsk-indikation-er-etisk -uacceptabelt; Finnish Medical Association, “Poikien Ympärileikkaus|Lääkäriliitto—Lääkärin Etiikka -Kirja,” 2021, https://www.laakariliitto.fi/laakarin-etiikka/lapset -ja-nuoret/poikien-ymparileikkaus/; Royal Dutch Medical Association (KNMG), “Nontherapeutic Circumcision of Male Minors,” 2010, http://www.circumstitions.com /Docs/KNMG-policy.pdf . For a review of medical society attitudes toward labial modification in minors, see Andreas Kalampalikis and Lina Michala, “Cosmetic Labiaplasty on Minors: A Review of Current Trends and Evidence,” International Journal of Impotence Research (2021), online ahead of print, https://doi.org/10.1038/s41443-021-00480-1. 9.  For an in-depth discussion of the ethical relevance of this asymmetry, see Brian D. Earp and Robert Darby, “Circumcision, Sexual Experience, and Harm,” University of Pennsylvania Journal of International Law 37, no. 2 (2017): 1–57, online, https://www.researchgate.net/publication/315763686. 10.  For example, most cases of true phimosis (pathological inability to retract the penile foreskin) can be treated with a topical steroid, or in especially difficult cases, with a tissue-sparing preputioplasty; a full circumcision is rarely needed. See Anna Orsola, Jorge Caffaratti, and Jose Maria Garat, “Conservative Treatment of Phimosis in Children Using a Topical Steroid,” Urology 56, no. 2 (2000): 307– 10, https://doi.org/10.1016/S0090-4295(00)00576-8; Sesi Hotonu et al., “Save the Foreskin: Outcomes of Preputioplasty in the Treatment of Childhood Phimosis,” The Surgeon 18, no. 3 (2020): 150–53, https://doi.org/10.1016/j .surge.2019.08.004. 11. This procedure, also sometimes called “clitoral unhooding,” is often paired with labiaplasty and is intended as a cosmetic enhancement. See Steven P. Davison, Kylie D. Hayes, and Gabrielle LaBove, “The Extended Clitoral-U Suspension and Unhooding,” Plastic Surgery 3, no. 1916 (2018): 1–2. 12. This Box is loosely adapted from Brian D. Earp, “Against Legalizing Female ‘Circumcision’ of Minors,” Global Discourse, 2022, online ahead of print, https://doi .org/10.1332/204378921X16347905414226. All source material for empirical claims is referenced within that paper. For more information, see Mohamed A. Baky Fahmy, Normal and Abnormal Prepuce (Cham, Switzerland: Springer International Publishing, 2020), https://doi.org/10.1007/9783-030-37621-5; Christopher J. Cold and John R. Taylor, “The Prepuce,” BJU International 83, no. S1 (1999): 34–44; and John R. Taylor, Anthony P. Lockwood, and A. J. Taylor, “The Prepuce: Specialized Mucosa of the Penis and Its Loss to Circumcision,” British Journal of Urology 77, no. 2 (1996): T he E thics of C i r c u mcision 

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291–95, https://doi.org/10.1046/j.1464-410X.1996.85023.x. See also Vincenzo Puppo, “Anatomy and Physiology of the Clitoris, Vestibular Bulbs, and Labia Minora with a Review of the Female Orgasm and the Prevention of Female Sexual Dysfunction,” Clinical Anatomy 26, no. 1 (2013): 134–52, https://doi.org/10.1002/ca.22177. 13. Jasmine Abdulcadir et al., “Seven Things to Know about Female Genital Surgeries in Africa,” Hastings Center Report 42, no. 6 (2012): 19–27. 14.  Harriet D. Lyons, “Genital Cutting: The Past and Present of a Polythetic Category,” Africa Today 53, no. 4 (2007): 3–17. For a discussion of this, with further key references and ethical implications, see Brian D. Earp, “Between Moral Relativism and Moral Hypocrisy: Reframing the Debate on ‘FGM,’” Kennedy Institute of Ethics Journal 26, no. 2 (2016): 105–44, https://doi.org/10.1353/ken.2016.0009. 15. Alice Schlegel and Herbert Barry, “Pain, Fear, and Circumcision in Boys’ Adolescent Initiation Ceremonies,” Cross-Cultural Research 1, no. 1 (2017): 1–29, https://doi. org/10.1177/1069397116685780; E. M. Baron and F. L. Denmark, “An Exploration of Female Genital Mutilation,” Annals of the New York Academy of Sciences 1087, no. 1 (2006): 339–55, https://doi.org/10.1196/annals.1385.018; Claire C. Robertson and Stanlie M. James, Genital Cutting and Transnational Sisterhood: Disputing U.S. Polemics (Chicago: University of Illinois Press, 2002). 16.  The quoted description of female “circumcision” in this Box is from Richard A. Shweder, “The Prosecution of Dawoodi Bohra Women: Some Reasonable Doubts,” Global Discourse, 2021, online ahead of print, https://doi.org /10.1332/204378921X16141809582432. The rest of the Box is loosely adapted from material in Arianne Shahvisi and Brian D. Earp, “The Law and Ethics of Female Genital Cutting,” in Female Genital Cosmetic Surgery: Solution to What Problem?, eds. Sarah M. Creighton and Lih-Mei Liao (Cambridge, MA: Cambridge University Press, 2019), 58–71. References for empirical claims are cited therein. See also Brian D. Earp and Rebecca Steinfeld, “Gender and Genital Cutting: A New Paradigm,” in Gifted Women, Fragile Men, ed. T. G. Barbat, Euromind Monographs 2 (Brussels: ALDE Group-EU Parliament, 2017). For further discussion, see Zachary T. Androus, “Critiquing Circumcision: In Search of a New Paradigm for Conceptualizing Genital Modification,” Global Discourse 3, no. 2 (2013): 266–80, https://doi.org/10.1080/23269995.2013.813282. Regarding medicalization, see Bettina Shell-Duncan, “The Medicalization of Female ‘Circumcision’: Harm Reduction or Promotion of a Dangerous Practice?,” Social Science & Medicine 52, no. 7 (2001): 1013–28, https://doi.org/10.1016 /S0277-9536(00)00208-2; David L. Gollaher, “From Ritual to Science: The Medical Transformation of Circumcision in America,” Journal of Social History 28, no. 1 (1994): 5–36; Frederick Hodges, “A Short History of the Institutionalization of Involuntary Sexual Mutilation in the United States,” in Sexual Mutilations, eds. George C. Denniston and Marilyn 312 

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Fayre Milos (New York: Springer US, 1997), 17–40, https:// doi.org/10.1007/978-1-4757-2679-4_2. 17. Thandisizwe R. Mavundla et al., “How Boys Become Dogs: Stigmatization and Marginalization of Uninitiated Xhosa Males in East London, South Africa,” Qualitative Health Research 20, no. 7 (2010): 931–41, https://doi.org/10.1177/1049732310363804; Lindiswa Jan, “How Xhosa Women Play ‘Hidden’ Ulwaluko Role,” September 11, 2017, https://www.iol.co.za/capeargus /opinion/how-xhosa-women-play-hidden-ulwaluko -role-11165772; Raven Rowanchilde, “Male Genital Modification: A Sexual Selection Interpretation,” Human Nature 7, no. 2 (1996): 189–215, https://doi.org/10.1007 /BF02692110; Rigmor C. Berg and Eva Denison, “A Tradition in Transition: Factors Perpetuating and Hindering the Continuance of Female Genital Mutilation/Cutting (FGM/C) Summarized in a Systematic Review,” Health Care for Women International 34, no. 10 (2013): 837–59, https://doi.org/10.1080/07399332.2012.721417. 18.  Jo Boyden, Alula Pankhurst, and Yisak Tafere, “Child Protection and Harmful Traditional Practices: Female Early Marriage and Genital Modification in Ethiopia,” Development in Practice 22, no. 4 (June 1, 2012): 510–22, https://doi .org/10.1080/09614524.2012.672957; WHO, “Traditional Male Circumcision among Young People” (Geneva, Switzerland: World Health Organization, 2009). 19.  Gerry Mackie, “Ending Footbinding and Infibulation: A Convention Account,” American Sociological Review 61, no. 6 (1996): 999–1017, https://doi.org/10.2307/2096305. 20. Abdulcadir et al., “Seven Things to Know about Female Genital Surgeries in Africa.” 21.  On the ineligibility of girls to undergo circumcision in certain cultures, where this is considered to be a valued social practice from which females are to be excluded based on their lower status under patriarchy, see, for example, the discussion in Shaye J. D. Cohen, “Why Aren’t Jewish Women Circumcised?,” Gender & History 9, no. 3 (1997): 560– 78, https://doi.org/10.1111/1468-0424.00076. For further discussion, see Brian D. Earp, “Genital Cutting as Gender Oppression: Time to Revisit the WHO Paradigm,” Frontiers in Human Dynamics 4, no. 778592 (2022): 1–22, https://www .frontiersin.org/articles/10.3389/fhumd.2022.778592/full. 22.  AAP, “Ritual Genital Cutting of Female Minors,” Pediatrics 125, no. 5 (2010): 1088–93, https://doi.org/10.1542 /peds.2010-0187; Richard A. Shweder, “The Goose and the Gander: The Genital Wars,” Global Discourse 3, no. 2 (2013): 348–66, https://doi.org/10.1080/23269995.2013.81 1923; Kavita Shah Arora and Allan J. Jacobs, “Female Genital Alteration: A Compromise Solution,” Journal of Medical Ethics 42, no. 3 (2016): 148–54, https://doi.org/10.1136 /medethics-2014-102375; Allan J. Jacobs and Kavita Shah Arora, “Punishment of Minor Female Genital Ritual Procedures: Is the Perfect the Enemy of the Good?,” Developing World Bioethics 17, no. 2 (2017): 134–40, https://doi .org/10.1111/dewb.12135; Raphael Cohen-Almagor, Just,

Reasonable Multiculturalism (Cambridge, MA: Cambridge University Press, 2021); Iddo Porat, “The Starting at Home Principle: On Ritual Animal Slaughter, Male Circumcision and Proportionality,” Oxford Journal of Legal Studies 41, no. 1 (2021): 30–58, https://doi.org/10.1093/ojls/gqaa027. 23. Shweder, “The Prosecution of Dawoodi Bohra Women.” 24.  Some of the main articles in which my colleagues and I have advanced arguments for this view are: Brian D. Earp, “The Ethics of Infant Male Circumcision,” Journal of Medical Ethics 39, no. 7 (2013): 418–20, https://doi.org/10.1136 /medethics-2013-101517; Brian D. Earp, “Female Genital Mutilation and Male Circumcision: Toward an Autonomy-Based Ethical Framework,” Medicolegal and Bioethics 5, no. 1 (2015): 89–104, https://doi.org/10.2147/MB.S63709; Brian D. Earp, “In Defence of Genital Autonomy for Children,” Journal of Medical Ethics 42, no. 3 (2016): 158–63, https://doi.org/10.1136/medethics-2015-103030; Brian D. Earp and David M. Shaw, “Cultural Bias in American Medicine: The Case of Infant Male Circumcision,” Journal of Pediatric Ethics 1, no. 1 (2017): 8–26, https://www .researchgate.net/publication/316527603; Brian D. Earp and Rebecca Steinfeld, “Genital Autonomy and Sexual WellBeing,” Current Sexual Health Reports 10, no. 1 (2018): 7–17, https://doi.org/10.1007/s11930-018-0141-x; Alex Myers and Brian D. Earp, “What Is the Best Age to Circumcise? A Medical and Ethical Analysis,” Bioethics 34, no. 7 (2020): 645–63, https://doi.org/10.1111/bioe.12714; Brian D. Earp, “Protecting Children from Medically Unnecessary Genital Cutting without Stigmatizing Women’s Bodies: Implications for Sexual Pleasure and Pain,” Archives of Sexual Behavior 50, no. 1 (2021): 1875–85, https://doi.org/10.1007 /s10508-020-01633-x; Brian D. Earp, “Male or Female Genital Cutting: Why ‘Health Benefits’ Are Morally Irrelevant,” Journal of Medical Ethics 47, no. 12/e92 (2021): 1–10, https:// doi.org/10.1136/medethics-2020-106782; Brian D. Earp et al., “The Need for a Unified Ethical Stance on Child Genital Cutting,” Nursing Ethics 28, no. 7–8 (2021): 1294–305, https://doi.org/10.1177/0969733020983397; Anthony Lempert et al., “Non-therapeutic Penile Circumcision of Minors: Current Controversies in UK Law and Medical Ethics. Clinical Ethics, online ahead of print, https://journals.sagepub .com/doi/full/10.1177/14777509221104703. See also the classic and recent work by: LeYoni Junos, “Bodily Integrity for Both: The Obligation of Amnesty International to Recognize All Forms of Genital Mutilation of Males as Human Rights Violations” (Hamilton, Bermuda: Amnesty International Bermuda, 1998), http://circumcisionharm.org /images-circharm.org/1998%20AI%20Report-Bodily%20 Integrity.pdf; Godfrey B. Tangwa, “Circumcision: An African Point of View,” in Male and Female Circumcision, eds. George C. Denniston, Frederick M. Hodges, and Marilyn F. Milos (Boston, MA: Springer, 1999), 183–93, https:// doi.org/10.1007/978-0-585-39937-9_12; Nahid F. Toubia, “Evolutionary Cultural Ethics and the Circumcision of

Children,” in Male and Female Circumcision, eds. George C. Denniston, Frederick Mansfield Hodges, and Marilyn Fayre Milos (Boston, MA: Springer, 1999), 1–7, https://doi .org/10.1007/978-0-585-39937-9_1; Hanny Lightfoot-Klein et al., “Genital Surgeries on Children below an Age of Consent,” in Psychological Perspectives on Human Sexuality, eds. Lenore T. Szuchman and Frank Muscarella (New York: John Wiley & Sons, 2000), 440–79; Christine Mason, “Exorcising Excision: Medico-Legal Issues Arising from Male and Female Genital Surgery in Australia,” Journal of Law and Medicine 9, no. 1 (2001): 58–67, http://europepmc .org/article/med/12116672; J. Steven Svoboda, “Promoting Genital Autonomy by Exploring Commonalities between Male, Female, Intersex, and Cosmetic Female Genital Cutting,” Global Discourse 3, no. 2 (2013): 237–55, https://doi.org/10.1080/23269995.2013.804757; Arianne Shahvisi, “Cutting Slack and Cutting Corners: An Ethical and Pragmatic Response to Arora and Jacobs’ ‘Female Genital Alteration: A Compromise Solution,’” Journal of Medical Ethics 42, no. 3 (2016): 156–57, https://doi.org/10.1136 /medethics-2015-103206; Kai Möller, “Male and Female Genital Cutting: Between the Best Interest of the Child and Genital Mutilation,” Oxford Journal of Legal Studies 40, no. 3 (2020): 508–32, https://doi.org/10.1093/ojls/gqaa001; Kate Goldie Townsend, “The Child’s Right to Genital Integrity,” Philosophy & Social Criticism 46, no. 7 (2020): 878–98, https://doi.org/10.1177/0191453719854212; Kate Goldie Townsend, “Defending an Inclusive Right to Genital and Bodily Integrity for Children,” International Journal of Impotence Research, 2022, in press. 25.  Earp, “Against Legalizing Female ‘Circumcision’ of Minors.” 26. Surya Monro et al., “Intersex: Cultural and Social Perspectives,” Culture, Health & Sexuality 23, no. 4 (2021): 431–40, https://doi.org/10.1080/13691058.2021.189952 9. See also Morgan Carpenter et al., “Endosex,” Journal of Medical Ethics, 2022, online ahead of print, http://dx.doi .org/10.1136/medethics-2022-108317. 27. Cheryl Chase, “Hermaphrodites with Attitude: Mapping the Emergence of Intersex Political Activism,” GLQ: A Journal of Lesbian and Gay Studies 4, no. 2 (1998): 189–211, https://doi.org/10.1215/10642684-4-2-189; Alice Dreger, Intersex in the Age of Ethics (Hagerstown, MD: University Publishing Group, 1999); Katrina Karkazis, Fixing Sex: Intersex, Medical Authority, and Lived Experience (Durham, NC: Duke University Press, 2008); Elizabeth Reis, Bodies in Doubt: An American History of Intersex (Baltimore: JHU Press, 2009). 28.  Morgan Carpenter, “Intersex Human Rights, Sexual Orientation, Gender Identity, Sex Characteristics and the Yogyakarta Principles Plus 10,” Culture, Health & Sexuality 23, no. 4 (2021): 516–32, https://doi.org/10.1080/13691058 .2020.1781262; Robin Dembroff, “Beyond Binary: Genderqueer as Critical Gender Kind,” Philosophers’ Imprint 20, no. 9 (2020): 1–23. T he E thics of C i r c u mcision 

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29. Vadim M. Shteyler, Jessica A. Clarke, and Eli Y. Adashi, “Failed Assignments—Rethinking Sex Designations on Birth Certificates,” New England Journal of Medicine 383, no. 25 (2020): 2399–401, https://doi.org/10.1056 /NEJMp2025974. 30.  Elizabeth Barnes, “Gender and Gender Terms,” Noûs 54, no. 3 (2020): 704–30, https://doi.org/10.1111 /nous.12279; Alice H. Eagly and Sabine Sczesny, “Gender Roles in the Future? Theoretical Foundations and Future Research Directions,” Frontiers in Psychology 10 (2019), online ahead of print, https://doi.org/10.3389/fpsyg.2019.01965; Brian D. Earp, “What Is Gender For?,” The Philosopher 108, no. 1 (2020): 94–99. 31.  Marie Fox and Michael Thomson, “Foreskin Is a Feminist Issue,” Australian Feminist Studies 24, no. 60 (2009): 195–210, https://doi.org/10.1080/08164640902852415; Elizabeth Reis, “Intersex Surgeries, Circumcision, and the Making of ‘Normal,’” in Genital Cutting: Protecting Children from Medical, Cultural, and Religious Infringements, eds. George C. Denniston, Frederick M. Hodges, and Marilyn Fayre Milos (Dordrecht, Netherlands: Springer, 2013), 137–47, http:// link.springer.com/10.1007/978-94-007-6407-1_10; Edmund M. Horowicz, “Intersex Children: Who Are We Really Treating?,” Medical Law International 17, no. 3 (2017): 183– 218, https://doi.org/10.1177/0968533217726109; Michela Fusaschi, “Gendered Genital Modifications in Critical Anthropology: From Discourses on FGM/C to New Technologies in the Sex/Gender System,” International Journal of Impotence Research, 2022, in press. 32.  Sarah M. Creighton, “Surgery for Intersex,” Journal of the Royal Society of Medicine 94, no. 5 (2001): 218–20; Nancy Ehrenreich and Mark Barr, “Intersex Surgery, Female Genital Cutting, and the Selective Condemnation of Cultural Practices,” Harvard Civil Rights–Civil Liberties Law Review 40, no. 1 (2005): 71–140, https://pdfs.semanticscholar.org /a986/deba1d02e1035596bfde5befe171eaa95252.pdf; Morgan Carpenter, “The Human Rights of Intersex People: Addressing Harmful Practices and Rhetoric of Change,” Reproductive Health Matters 24, no. 47 (2016): 74–84, https://doi.org/10.1016/j.rhm.2016.06.003; Elizabeth Reis, “Did Bioethics Matter? A History of Autonomy, Consent, and Intersex Genital Surgery,” Medical Law Review 27, no. 4 (2019): 658–74, https://doi.org/10.1093 /medlaw/fwz007; Renata Ziemińska, “The Epistemic Injustice Expressed in ‘Normalizing’ Surgery on Children with Intersex Traits,” Diametros 17, no. 66 (2020): 52–65; Samuel Reis-Dennis and Elizabeth Reis, “The Irrelevance of Data to the Ethics of Intersex Surgery,” Journal of Pediatric Ethics 1, no. 4 (2021): 162–64. 33.  Milton Diamond and Jameson Garland, “Evidence Regarding Cosmetic and Medically Unnecessary Surgery on Infants,” Journal of Pediatric Urology 10, no. 1 (2014): 2–6, https://doi.org/10.1016/j.jpurol.2013.10.021. 34.  Anne Fausto-Sterling, “Gender/Sex, Sexual Orientation, and Identity Are in the Body: How Did They Get 314 

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There?,” Journal of Sex Research 56, no. 4–5 (2019): 529–55, https://doi.org/10.1080/00224499.2019.1581883; Katharine Jenkins, “Toward an Account of Gender Identity,” Ergo, an Open Access Journal of Philosophy 5, no. 27 (2018): 713–44, http://dx.doi.org/10.3998/ergo.12405314.0005.027; Talia Mae Bettcher, “Feminist Perspectives on Trans Issues,” in The Stanford Encyclopedia of Philosophy, ed. Edward N. Zalta (Metaphysics Research Lab, Stanford University, Spring 2014), https://plato.stanford.edu/archives /spr2014/entries/feminism-trans/; Robin Dembroff, “Real Talk on the Metaphysics of Gender,” Philosophical Topics 46, no. 2 (2018): 21–50. 35. Virginia Hall, “A Transgirl Speaks about Foreskin,” Medium (blog), May 10, 2017, https://medium .com/@Virginiahallath/a-transgirl-speaks-about-foreskin -53a4f625bb9d. 36.  Nikolaos A. Papadopulos et al., “Quality of Life and Patient Satisfaction Following Male-to-Female Sex Reassignment Surgery,” Journal of Sexual Medicine 14, no. 5 (2017): 721–30, https://doi.org/10.1016/j.jsxm.2017.01.022; Anthony N. Almazan and Alex S. Keuroghlian, “Association between Gender-Affirming Surgeries and Mental Health Outcomes,” JAMA Surgery 156, no. 7 (2021): 611–18, https://doi.org/10.1001/jamasurg.2021.0952. 37.  Geolani W. Dy et al., “Reconstructive Management Pearls for the Transgender Patient,” Current Urology Reports 19, no. 36 (2018): 1–8, https://doi.org/10.1007/s11934-018 -0795-y; Dries Opsomer et al., “Creation of Clitoral Hood and Labia Minora in Penile Inversion Vaginoplasty in Circumcised and Uncircumcised Transwomen,” Plastic and Reconstructive Surgery 142, no. 5 (2018): 729e–33, https:// doi.org/10.1097/PRS.0000000000004926. 38.  Werker, Terng, and Kon, “The Prepuce Free Flap.” 39. Serkan Yildirim et al., “The Preputium: An Overlooked Skin Graft Donor Site,” Annals of Plastic Surgery 46, no. 6 (2001): 630–34; Mohamed A. Baky Fahmy, “Medical and Surgical Uses of the Prepuce,” in Normal and Abnormal Prepuce (Cham, Switzerland: Springer International Publishing, 2020), 75–81, https://doi.org/10.1007/978-3-030-37621-5. 40.  Adapted from BCBI, “Medically Unnecessary Genital Cutting and the Rights of the Child: Moving toward Consensus,” The American Journal of Bioethics 19, no. 10 (2019): 17–28, https://doi.org/10.1080/15265161.2019.1643 945; Brian D. Earp, “The Child’s Right to Bodily Integrity,” in Ethics and the Contemporary World, ed. David Edmonds (Abingdon and New York: Routledge, 2019), 217–35. 41.  AAP, “Male Circumcision (Technical Report),” Pediatrics 130, no. 3 (2012): e756–85, https://doi.org/10.1542 /peds.2012-1990. 42.  Frisch et al., “Cultural Bias in the AAP’s 2012 Technical Report and Policy Statement on Male Circumcision.” 43.  Robert Darby, “Risks, Benefits, Complications and Harms: Neglected Factors in the Current Debate on Non-Therapeutic Circumcision,” Kennedy Institute of Ethics Journal 25, no. 1 (2015): 1–34; George C. Denniston, “The

Harm of Circumcision,” in Genital Cutting: Protecting Children from Medical, Cultural, and Religious Infringements, eds. George C. Denniston, Frederick M. Hodges, and Marilyn Fayre Milos (Dordrecht, Netherlands: Springer, 2013), 59–68, http://link.springer.com/10.1007/978-94-007-6407-1_4. 44. Priscilla Alderson, “Children’s Consent and the Zone of Parental Discretion,” Clinical Ethics 12, no. 2 (2017): 55–62, https://doi.org/10.1177/1477750917691887; Rosalind McDougall, Clare Delany, and Lynn Gillam, “The Value of Open Deliberation in Clinical Ethics, and the Role of Parents’ Reasons in the Zone of Parental Discretion,” The American Journal of Bioethics 18, no. 8 (2018): 47–49, https://doi.org /10.1080/15265161.2018.1485773. For discussion, see Brian D. Earp, “Meta-surrogate Decision Making and Artificial Intelligence,” Journal of Medical Ethics 48, no. 5 (2022): 287–89. 45.  For a related argument, see Clare Chambers, Intact: A Defense of the Unmodified Body (New York: Penguin, 2022). 46.  For discussion, see Joseph Mazor, “The Child’s Interests and the Case for the Permissibility of Male Infant Circumcision,” Journal of Medical Ethics 39, no. 7 (2013): 421–28, https://doi.org/10.1136/medethics-2013-101318; Eldar Sarajlic, “Can Culture Justify Infant Circumcision?,” Res Publica 20, no. 4 (2014): 327–43, https://doi.org/10.1007 /s11158-014-9254-x; Eldar Sarajlic, “Children, Culture, and Body Modification,” Kennedy Institute of Ethics Journal 30, no. 2 (2020): 167–90. 47.  Pew Research, “Young Adults around the World Are Less Religious” (Washington, DC: Pew Research Center, June 13, 2018), https://www.pewforum.org/2018/06/13 /young-adults-around-the-world-are-less-religious-by -several-measures/. 48.  Kai Möller, “Ritual Male Circumcision and Parental Authority,” Jurisprudence 8, no. 3 (2017): 461–79, https:// doi.org/10.1080/20403313.2017.1339535. 49.  Earp and Darby, “Circumcision, Sexual Experience, and Harm.” 50.  Ellen Gruenbaum, The Female Circumcision Controversy: An Anthropological Perspective (Philadelphia: University of Pennsylvania Press, 2001). 51. For further discussion, see Brian D. Earp, “Do the Benefits of Male Circumcision Outweigh the Risks? A Critique of the Proposed CDC Guidelines,” Frontiers in Pediatrics 3, no. 18 (2015): 1–6, https://doi.org/10.3389 /fped.2015.00018; Morten Frisch and Brian D. Earp, “Circumcision of Male Infants and Children as a Public Health Measure in Developed Countries: A Critical Assessment of Recent Evidence,” Global Public Health 13, no. 5 (2018): 626–41, https://doi.org/10.1080/17441692.2016.1184292. 52.  AAP, “Circumcision Policy Statement,” Pediatrics 130, no. 3 (2012): 585–86, https://doi.org/10.1542/peds.2012 -1989. 53.  Frisch et al., “Cultural Bias in the AAP’s 2012 Technical Report and Policy Statement on Male Circumcision.” 54. CPS, “Newborn Male Circumcision,” Paediatrics & Child Health 20, no. 6 (2015): 311–20.

55.  DMA, “Lægeforeningens Politik Vedrørende Omskæring Af Drengebørn Uden Medicinsk Indikation.” 56.  For context and citations, see Kirsten Bell, “HIV Prevention: Making Male Circumcision the ‘Right’ Tool for the Job,” Global Public Health 10, no. 5–6 (2015): 552–72, https:// doi.org/10.1080/17441692.2014.903428. For an ethical critique of these trials, see Max Fish et al., “A New Tuskegee? Unethical Human Experimentation and Western Neocolonialism in the Mass Circumcision of African Men,” Developing World Bioethics 21, no. 4 (2021): 211–26. 57.  Maria J. Wawer et al., “Circumcision in HIV-Infected Men and Its Effect on HIV Transmission to Female Partners in Rakai, Uganda: A Randomised Controlled Trial,” The Lancet 374, no. 9685 (2009): 229–37, https://doi.org/10.1016 /S0140-6736(09)60998-3. 58.  Marge Berer, “Male Circumcision for HIV Prevention: Perspectives on Gender and Sexuality,” Reproductive Health Matters 15, no. 29 (2007): 45–48, https://doi.org/10.1016 /S0968-8080(07)29304-8; Marge Berer, “Male Circumcision for HIV Prevention: What about Protecting Men’s Partners?,” Reproductive Health Matters 16, no. 32 (2008): 171–75, https://doi.org/10.1016/S0968-8080(08)32418-5; Marge Berer, “Male Circumcision and Risk of HIV in Women,” The Lancet 374, no. 9700 (2009): 1497–98, https://doi.org /10.1016/S0140-6736(09)61898-5. 59.  First, the baseline prevalence of penile circumcision in the United States is already high, not low, and most HIV in the United States is not heterosexually transmitted, but is rather transmitted among men who have sex with men and injecting drug users, as in many other Global North contexts. The overall prevalence of HIV is also much lower. Jennifer A. Bossio, Caroline F. Pukall, and Stephen S. Steele, “A Review of the Current State of the Male Circumcision Literature,” Journal of Sexual Medicine 11, no. 12 (2014): 2847–64, https://doi.org/10.1111/jsm.12703; Jennifer A. Bossio, Caroline F. Pukall, and Stephen Steele, “Response to: ‘The Literature Supports Policies Promoting Neonatal Male Circumcision in N. America,’” Journal of Sexual Medicine 12, no. 5 (2015): 1306–7, https:// doi.org/10.1111/jsm.12852; Madhur Nayan et al., “Circumcision and Risk of HIV among Males from Ontario, Canada,” Journal of Urology, 2021, online ahead of print, https://doi.org/10.1097/JU.0000000000002234; Morten Frisch and Jacob Simonsen, “Non-Therapeutic Male Circumcision in Infancy or Childhood and Risk of Human Immunodeficiency Virus and Other Sexually Transmitted Infections: National Cohort Study in Denmark,” European Journal of Epidemiology, 2021, in press. 60.  Matthew Deacon and Gordon Muir, “What Is the Medical Evidence on Non-Therapeutic Child Circumcision?,” International Journal of Impotence Research, 2022, online ahead of print, https://doi.org/10.1038/s41443 -021-00502-y. 61. J. Steven Svoboda, “Nontherapeutic Circumcision of Minors as an Ethically Problematic Form of Iatrogenic T he E thics of C i r c u mcision 

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Injury,” AMA Journal of Ethics 19, no. 8 (2017): 815–24, https:// doi.org/10.1001/journalofethics.2017.19.8.msoc2-1708. 62. Brian D. Earp, Lauren Sardi, and William Jellison, “False Beliefs Predict Increased Circumcision Satisfaction in a Sample of US American Men,” Culture, Health & Sexuality 20, no. 8 (2018): 945–59, https://doi.org/10.1080/1369 1058.2017.1400104. 63.  Ronald Goldman, “The Psychological Impact of Circumcision,” BJU International 83, no. S1 (1999): 93–102, https://doi.org/10.1046/j.1464-410x.1999.0830s1093.x. 64.  BCBI, “Medically Unnecessary Genital Cutting and the Rights of the Child,” 18. 65.  Robert S. Van Howe, “Effect of Confounding in the Association between Circumcision Status and Urinary Tract Infection,” The Journal of Infection 51, no. 1 (2005): 59–68, https://doi.org/10.1016/j.jinf.2004.07.003. 66.  AAP, “Male Circumcision (Technical Report).” 67. National Health Service, “Urinary Tract Infection (UTI) in Children,” 2020, https://www.nhsinform.scot /illnesses-and-conditions/kidneys-bladder-and-prostate /urinary-tract-infection-uti-in-children; Steven L. Chang and Linda D. Shortliffe, “Pediatric Urinary Tract Infections,” Pediatric Clinics 53, no. 3 (2006): 379–400, https:// doi.org/10.1016/j.pcl.2006.02.011. 68.  Aaron J. Krill, Lane S. Palmer, and Jeffrey S. Palmer, “Complications of Circumcision,” The Scientific World Journal 11 (2011): 2458–68, https://doi.org/10.1100/2011/373829. 69.  Joao L. Pippi Salle et al., “Glans Amputation during Routine Neonatal Circumcision: Mechanism of Injury and Strategy for Prevention,” Journal of Pediatric Urology 9, no. 6, Part A (2013): 763–68, https://doi.org/10.1016/j.jpu rol.2012.09.012. 70.  Scott Campbell, “Risk and the Subjectivity of Preference,” Journal of Risk Research 9, no. 3 (2006): 225–42, https://doi.org/10.1080/13669870600603147. 71. John M. Hutson, “Circumcision: A Surgeon’s Perspective,” Journal of Medical Ethics 30, no. 3 (June 1, 2004): 238–40, https://doi.org/10.1136/jme.2002.001313. 72. Rebecca Dekker and Anna Bertone, “Evidence and Ethics on: Circumcision,” Evidence Based Birth Signature Article (2019): 1–44. 73.  Mohamed A. Baky Fahmy, “Complications of Male Circumcision (MC),” in Congenital Anomalies of the Penis (Cham, Switzerland: Springer, 2017), 227–35, https://doi .org/10.1007/978-3-319-43310-3_35. 74.  Robert Darby, “To Avoid Circumcision Complications, Avoid Circumcision,” Canadian Urological Association Journal 8, no. 7–8 (2014): 231, https://doi.org/10.5489/cuaj.1709. 75.  Aaron A. R. Tobian and Ronald H. Gray, “The Medical Benefits of Male Circumcision,” JAMA 306, no. 13 (2011): 1479–80. Thank you to one of the editors for raising this point. 76. John R. Holman and Keith A. Stuessi, “Adult Circumcision,” American Family Physician 59, no. 6 (1999): 1514. 77.  Helen A. Weiss et al., “Complications of Circumcision in Male Neonates, Infants and Children: A Systematic 316 

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Review,” BMC Urology 10, no. 2 (2010): 1–13, https://doi .org/10.1186/1471-2490-10-2. 78.  Tobian and Gray, “The Medical Benefits of Male Circumcision.” 79.  Brian J. Morris et al., “A ‘Snip’ in Time: What Is the Best Age to Circumcise?,” BMC Pediatrics 12, no. 20 (2012): 1–15, esp. 4. 80. The claim is contestable, in part, because there are no high-quality studies that have directly compared routine infant circumcision with later, consensual adult circumcision, controlling for all relevant confounds, such as whether the procedure is therapeutic or non-therapeutic. Rather the comparisons are typically between different studies, or using different databases, reflecting circumcisions done at different ages in different settings by different practitioners, and so on. See Myers and Earp, “What Is the Best Age to Circumcise?” 81.  Campbell, “Risk and the Subjectivity of Preference.” 82.  Clare Chambers, “Reasonable Disagreement and the Neutralist Dilemma: Abortion and Circumcision in Matthew Kramer’s ‘Liberalism with Excellence,’” The American Journal of Jurisprudence 63, no. 1 (2018): 9–32, https://doi .org/10.1093/ajj/auy006; Barry Lyons, “Male Infant Circumcision as a ‘HIV Vaccine,’” Public Health Ethics 6, no. 1 (2013): 90–103, https://doi.org/10.1093/phe/phs039. 83.  Stephen R. Munzer, “Examining Nontherapeutic Circumcision,” Health Matrix 28, no. 1 (2018): 1–77, https:// scholarlycommons.law.case.edu/healthmatrix/vol28 /iss1/5/. 84.  BCBI, “Medically Unnecessary Genital Cutting and the Rights of the Child,” 18. 85.  Gregory J. Boyle et al., “Circumcision of Healthy Boys: Criminal Assault?,” Journal of Law and Medicine 7, no. 2 (2000): 301–10; Reinhard Merkel and Holm Putzke, “After Cologne: Male Circumcision and the Law: Parental Right, Religious Liberty or Criminal Assault?,” Journal of Medical Ethics 39, no. 7 (2013): 444–49, https://doi.org/10.1136 /medethics-2012-101284; Brian D. Earp, “Why Was the U.S. Ban on Female Genital Mutilation Ruled Unconstitutional, and What Does This Have to Do with Male Circumcision?,” Ethics, Medicine and Public Health 15, no. 100533 (2020): 1–13, https://doi.org/10.1016/j.jemep.2020.100533; Christopher Price, “Male Circumcision: An Ethical and Legal Affront,” Bulletin of Medical Ethics 128, no. 5 (1997): 13–19; Margaret Sommerville, The Ethical Canary: Science, Society, and the Human Spirit (Montreal: McGill-Queen’s University Press, 2004); J. Steven Svoboda, Peter W. Adler, and Robert S. Van Howe, “Circumcision Is Unethical and Unlawful,” The Journal of Law, Medicine & Ethics 44, no. 2 (2016): 263–82, https:// doi.org/10.1177/1073110516654120; J. Steven Svoboda, Peter W. Adler, and Robert S. Van Howe, “Is Circumcision Unethical and Unlawful? A Response to Morris et al.,” The Journal of Medical Law and Ethics 7, no. 1 (2019): 72–92. 86. David Archard, “The Wrong of Rape,” The Philosophical Quarterly 57, no. 228 (2007): 374–93, https://doi

.org/10.1111/j.1467-9213.2007.492.x; Brian D. Earp and Joshua Yuter, “Is Circumcision Wrong?,” Letter, September 3, 2019, https://letter.wiki//conversation/127. 87.  Earp and Yuter, “Is Circumcision Wrong?” 88.  Marie Fox and Michael Thomson, “Bodily Integrity, Embodiment, and the Regulation of Parental Choice,” Journal of Law and Society 44, no. 4 (2017): 501–31, https://doi .org/10.1111/jols.12056; Jonathan Herring and Jesse Wall, “The Nature and Significance of the Right to Bodily Integrity,” The Cambridge Law Journal 76, no. 3 (2017): 566–88, https://doi.org/10.1017/S0008197317000605. 89.  A possible exception is the case of Jehovah’s Witnesses (JW), many of whom, based on their metaphysical beliefs, would prefer to die than to undergo certain medically necessary procedures, most notably blood transfusions. However, in the case of minor children raised within JW families, if there is even a slim chance (and there surely is) that they might one day leave their religious community or abandon the highly unusual belief system of their parents—or even just the specific belief that it is better to die than to receive a blood transfusion—then it is wrong to withhold the transfusion, assuming no available bloodless options. It is precisely the fact that we cannot be sufficiently certain of the child’s future metaphysical beliefs—and hence what they would, in fact, consent to upon becoming autonomous—that entitles us to give the necessary infusion, thereby preserving and protecting their future bodily autonomy (that is, leaving the decision about life or death to them when they are mature enough to face it given their adult values and commitments). For a further interesting analysis of the JW case, see Niklas Juth and Niels Lynøe, “Are There Morally Relevant Differences between Hymen Restoration and Bloodless Treatment for Jehovah’s Witnesses?,” BMC Medical Ethics 15, no. 89 (2014): 1–7, https://doi.org/10.1186/1472-6939 -15-89. See also Brian D. Earp, Joanna Demaree Cotton, and Julian Savulescu, “Against Externalism in Capacity Assessment,” American Journal of Bioethics, forthcoming. 90. This argument is developed in Earp, “The Child’s Right to Bodily Integrity.” For a critical discussion, see Chambers, Intact: A Defense of the Unmodified Body. 91.  Chambers, “Reasonable Disagreement and the Neutralist Dilemma”; Möller, “Ritual Male Circumcision and Parental Authority”; Sarajlic, “Children, Culture, and Body Modification.” 92.  For recent discussions of the need for gender-neutral definitions of rape and sexual assault, see David M. Bierie and James C. Davis-Siegel, “Measurement Matters: Comparing Old and New Definitions of Rape in Federal Statistical Reporting,” Sexual Abuse 27, no. 5 (2015): 443– 59, https://doi.org/10.1177/1079063214521470; Natasha McKeever, “Can a Woman Rape a Man and Why Does It Matter?,” Criminal Law and Philosophy 13, no. 4 (2019): 599– 619, https://doi.org/10.1007/s11572-018-9485-6; Scott M. Walfield, “‘Men Cannot Be Raped’: Correlates of Male

Rape Myth Acceptance,” Journal of Interpersonal Violence 36, no. 13–14 (2021): 6391–417, https://doi.org/10.1177 /0886260518817777. 93. Namely those in which such touching is required to protect and preserve the child’s future bodily integrity and sexual autonomy (e.g., necessary medical exams for diagnosis or treatment, or a parent helping a young child wash their genitalia when the child cannot yet do so on their own). 94.  Brian D. Earp, “Zero Tolerance for Genital Mutilation: A Review of Moral Justifications,” Current Sexual Health Reports 12, no. 1 (2020): 276–88, https://doi.org/10 .1007/s11930-020-00286-0. 95.  George C. Denniston and Marilyn Fayre Milos, eds., Sexual Mutilations: A Human Tragedy (Boston, MA: Springer US, 1997), https://doi.org/10.1007/978-1-4757-2679-4. 96.  Markus Bauer, Daniela Truffer, and Daniela Crocetti, “Intersex Human Rights,” The International Journal of Human Rights 24, no. 6 (2020): 724–49, https://doi.org/10 .1080/13642987.2019.1671354. 97.  Waldeck, “Social Norm Theory and Male Circumcision.” 98.  Fox and Thomson, “Foreskin Is a Feminist Issue”; see also Ralph Sandland, “The Construction of Gender and Sexuality in the Approach of Key International Law Actors to the Circumcision of Children,” Human Rights Law Review 19, no. 4 (2019): 617–47, https://doi.org/10.1093/hrlr/ngz030. 99. Tim Hammond and Adrienne Carmack, “LongTerm Adverse Outcomes from Neonatal Circumcision Reported in a Survey of 1,008 Men: An Overview of Health and Human Rights Implications,” The International Journal of Human Rights 21, no. 2 (February 12, 2017): 189–218, https://doi.org/10.1080/13642987.2016.1260007. 100.  Richard A. Shweder, “‘What about Female Genital Mutilation?’ And Why Understanding Culture Matters in the First Place,” in Engaging Cultural Differences: The Multicultural Challenge in Liberal Democracies, eds. Richard A. Shweder, Martha Minow, and Hazel R. Markus (New York: Russell Sage Foundation Press, 2002), 216–51. 101. Joann M. Ross, “Making Marital Rape Visible: A History of American Legal and Social Movements Criminalizing Rape in Marriage” (Doctoral Dissertation, The University of Nebraska–Lincoln, Nebraska, United States, 2015), https://www.proquest.com/docview/1749782227 /abstract/CDA979960A9A4506PQ/1. 102.  Goldman, “The Psychological Impact of Circumcision”; Sarah E. Waldeck, “Using Male Circumcision to Understand Social Norms as Multipliers,” University of Cincinnati Law Review 72 (2003): 455–526. 103. I explain this position at great length in Earp, “Against Legalizing Female ‘circumcision’ of Minors.” 104.  See Dena S. Davis, “Male and Female Genital Alteration: A Collision Course with the Law,” Health Matrix 11, no. 1 (2001): 487–570.

T he E thics of C i r c u mcision 

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SEC TION VIII

BIOTECHNOLOGY AND SOCIETY

CHAPTER 27

Data Ethics and the Testbed Nation Aaro Tupasela

O

ver the past decade, catch phrases like “data is the new oil” and “Nordic data gold mine”1 have become popular among proponents of big data.2 Policymakers, researchers, and businesses alike expect big data to provide endless growth opportunities for economic development with minimal environmental impact. The field of biomedical research is a prime example, as experts and practitioners anticipate that health care and genetic data will yield a wealth of new insights and innovations that will, in turn, drive future economies toward new heights. However, biomedical research has faced challenges associated with accessing sufficiently large data sets of high quality. One solution has been to acquire data that are systematically collected by states, particularly the Nordic welfare states. The Nordic countries have a long tradition of collecting population-wide data within the health care sector and conducting population-based research, such as cohort studies, which researchers can link to tissue samples for biobanks. In addition, the primary care systems in the Nordic countries have a high degree of digitalization, which facilitates the secondary use of data. These resources have become extremely valuable within the global data market. Marion Fourcade and Jeffrey Gordon3 have recently suggested that states may have become less accountable over time because of their increased collection and use of extensive population data. 320

Although states have been utilizing population data for centuries to aid governance,4 a reassessment of the relationship between state-collected data and their uses has suggested that the aims of data use have extended beyond governance; increasingly, the focus has shifted toward the capitalization of data in the global data markets.5 In this model, health care data gathered by the state serve as a base for wealth creation.6 Many states are now seeking to copy the data capitalization model developed by the private sector. Large social media and IT companies, such as Facebook, Amazon, Microsoft, Apple, and Google, have been the major drivers of the emergent data market. These companies provide users with access to services and platforms in exchange for the users’ data, which are then sold to other companies for marketing and analysis. Although the emergence of these companies has a unique and situated history, many states have sought to replicate the private sector model using data that the state has collected through its numerous functions, including health care. This chapter explores the ethical dimensions of data collection and data use in relation to state practices within the Nordic countries. The purpose of the chapter is to ask if the standard concept of individual consent is sufficient to guarantee autonomy and individual rights, or do we need to develop a better framework for understanding and governing how population data are collected and used by the state?

This discussion can be located within the field of data ethics and critical data studies (CDS),7 which focuses on the relevant questions relating to the collection and use of data. As well as researching individual autonomy, CDS also addresses broader issues and questions surrounding the construction and governance of data infrastructures; for example, prominent issues include the impact and role of the structural changes governing how data are collected and used and the legal changes that are required to facilitate these activities. These topics go beyond the remit of the individual and their respective rights, as CDS acknowledges that the structural features and changes within data management raise broader societal questions and concerns. In many ways, the questions that focus on the use of individuals’ data address the functional changes in the data supply chains and the means by which value is derived from the data. In the following section, I briefly discuss the broader context of change in relation to health data spaces. I then discuss the notion of informed consent and whether it can sufficiently address the new challenges posed by societally relevant and impactful data supply chains. In the third section, I review these issues in relation to the “testbed nation” and explore how this concept has been used to redefine the relationships between data sources, data collectors, and data consumers.

H EA LTH DATA SPACE S In recent years, several international efforts have focused on developing common standards and guidelines for sharing different types of health data among a broad range of practitioners, including researchers and businesses. These developments have progressed beyond the traditional questions surrounding informed consent and have reflected a wider international interest in data collection and use. The implementation of these standards necessitates that data practices at the national level are modified to ensure that data sharing and data access are possible. These processes require political support,

but they are also significant for data practitioners, as they directly benefit from accessing new types of data from different regions and countries. In the following text, I briefly discuss several examples of these initiatives: EHDS, FAIR, TEHDAS, and GAIA-X. The European Health Data Space (EHDS)8 is an initiative of the European Commission that is operating between 2019 and 2025. The goal of the initiative is to facilitate and improve the access and movement of health data in Europe. Data that fall under the remit of the EHDS includes electronic health records, genomics data, and data from patient registries. EHDS plans to allow for the seamless transfer of medical records for individuals traveling between European countries. Significantly, while the data can be used for medical treatment, EHDS also lays the groundwork for sharing data for secondary purposes, such as research; this feature is regarded as particularly important for economic development. The FAIR data principles were established in 20169 with the purpose of promoting scientific data management and good stewardship. FAIR stands for findable, accessible, interoperable, and re-usable. One goal of the FAIR principles is to facilitate data findability and usability by humans and machines. While the FAIR data principles focus on making all scientific data more accessible, they have a broad significance for health and biobanking data; these two domains utilize many of the FAIR principles, such as employing metadata to describe tissue sample collections. A third example of the emerging data economy and its associated standards is the TEHDAS Joint Action, which aims to develop and establish European principles for the secondary use of health data. One of the key principles of TEHDAS is to ensure that individuals have the right to control their own data. This includes data that are automatically collected and stored by the state, as well as data that individuals manage for themselves, such as MyData. Simultaneously, TEHDAS also seeks to establish common ground rules for sharing different types of data within the European context. GAIA-X shares many similarities with TEHDAS and is the final example in this section. The focus of D ata E thics and the T estbed N ation 

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GAIA-X is to develop a European digital infrastructure that serves the needs of institutions, such as research organizations and private companies. GAIA-X is a project initiated by Europe for Europe and beyond. Representatives from business, politics, and science from Europe and around the globe are working together, hand in hand, to create a federated and secure data infrastructure. Companies and citizens will collate and share data—in such a way that they keep control over them. They should decide what happens to their data and where they are stored, and always retain data sovereignty.10 GAIA-X is a major undertaking with ten working groups focusing on specific domains, including finance, energy, and health. The initiatives use terms such as data ecosystem to conceptualize the organization of large and complex information systems. Each initiative represents the role of the individual by exercising the individual’s right to decide how their data are used. These different examples highlight the emergence of new types of data ecosystems in which large quantities of personal data can be utilized for secondary purposes. Some aspects of data sharing are broadly accepted, such as ensuring that data are findable. However, sharing health data across national borders represents a more contentious issue that raises critical and sensitive questions. For example, a physician accessing the health records for a person in another country incorporates ethical dimensions that are quite different to a private company being given access to the anonymized health data of 10,000 individuals. Although many of these approaches rely on informed consent and respect for the individual’s right of autonomy, there are different consequences and ethical discussions regarding the release of population-level data, particularly when individuals may not be aware that the data are being gathered and stored. Ventures such as TEHDAS emphasize the right of individuals to decide how their data are used. Given that the changes are systemic in nature, however, it is important to ask whether individual consent is sufficient or whether broader public discussions are needed. The examples described in this chapter are indicative of the major changes that are 322 

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currently underway to restructure data supply chains and improve data sharing and movement.

R E T H I N K I N G I N FO R M E D CO N S E N T Traditionally, medical research has required that informed consent is obtained from individual participants if the research involves exposure to physical or psychological intervention or observation. This approach provides the foundation for respecting the autonomy of the research subject, and it has become a cornerstone of medical research. Discussions on informed consent within the field of biobanking became heightened when researchers began to request the re-use of existing samples and data for secondary purposes. As a result, researchers began to express different viewpoints: some argued that researchers should re-request consent every time samples are used for a new research purpose, while others stated that these additional consent processes were unscientific and an unnecessary waste of time and resources. How can a researcher request permission to use data in a new field of study when the potential is still uncertain? These discussions led to the development of new terminology and practices in the field of informed consent: terms such as “broad consent”11 and “dynamic consent”12 now reflect the altered topography of research. Methods for deriving data from research subjects have been redefined to support the autonomy of the research subjects and their right to accept or decline participation. State authorities and health care professionals have also been experimenting with a range of solutions to maintain and respect individual autonomy over the use of one’s data; for example, “opt-out” and “opt-in” solutions have been explored to manage research participation and the secondary use of data.13 These solutions have sought to avoid the generally time-consuming and costly options associated with reacquiring consent for every new research phase. Another line of ethical argumentation offers an alternative to the discussions on informed consent: Jones and colleagues14 have suggested that researchers have an ethical duty to utilize data that have

already been collected in order to minimize waste and extend the chances of identifying potential treatments and cures. This line of reasoning suggests that once an actor, state, or researcher has collected data or samples, they have a duty to maximize the benefits that can be accrued from these resources. This recent discussion has not attempted to define what constitutes a benefit (public vs. private), but it has highlighted a utilitarian approach to solving the issue. The informed consent discussions that focus on biobanking and health care data have identified the challenges associated with the structural and practical changes relating to the re-use of data. While Nordic welfare states have a long history of using state-collected data for research and population governance, the secondary use of samples and data has recently taken on a broader significance, particularly from a commercial perspective. State-initiated data collection practices have also differed because biobank data and samples have traditionally been collected for a single specific purpose. More recently, however, the type of consent obtained from donors and research participants is increasingly broad; thus, the data in the databases and tissue collections can also be collected and maintained for secondary purposes. This change in collection and consent practices reflects the new and altered approach to data collection and supply systems. Jake Metcalf has examined this changing research landscape and the significance of Big Data ethics: Discussions of human subject protections in big data research are necessarily discussions of how data ethics will relate to already established norms and institutions that have not yet grappled with the ways in which data research impacts human subjects.15 In addition to the physical intervention of medical research, Metcalf’s observation highlights how data use and re-use should also be concerned with the other potential impacts on the lives of data subjects. In relation to biobanking and health data, this discussion has centered on how private interests are managed in the re-use of publicly collected and maintained data.

The following examples provide contexts for the changing consent practices. The first example describes the secondary use of heel prick cards, which are used in many countries, including Denmark, to screen newborns for phenylketonuria (PKU), a potentially lethal condition if not diagnosed and treated early. The PKU test is generally carried out within the first few days after birth by taking a few drops of blood (usually from the infant’s heel) and dabbing it onto a card that is then sent for diagnostic analysis. Denmark has been storing these screening cards from all Danish births for decades; however, as the screening is completed for diagnostic purposes, their preservation for a secondary use has come under scrutiny, as infants cannot provide informed consent.16 In addition, parents frequently pay little attention to the test because of the numerous other factors associated with the arrival of a newborn. Despite the concerns, the PKU cards are regarded as extremely useful resources that have provided important research insights over the years. In addition, the collection continues to build a comprehensive overview of the Danish population. The second example describes two recent legislative changes in Finland that highlight how data ethics in public policies are changing in relation to the re-use of samples and data. The first is the Biobank Act of 2013, which has allowed for hundreds of thousands of so-called legacy samples to be transferred to biobanks without obtaining additional consent.17 A legacy sample is a tissue sample that can be used for future research despite being originally collected for a single research project. A second legislative change in Finland was the introduction of the Act on the Secondary Use of Health and Social Data in 2019, which facilitates the broader use of social and welfare data for secondary research. In addition, a new authority called Findata was established to provide permits for data requests. Informed consent and the secondary use of data have become salient issues because of recent discussions addressing the practices of social media companies, such as Facebook. Attention has been directed toward their collection and use of users’ data and the potential negative impacts on the well-being of D ata E thics and the T estbed N ation 

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specific groups. Although the collection and use of data by state authorities for diagnostic purposes, treatment, and research have developed in a very different context, many of the issues surrounding transparency and autonomy remain. The secondary use of samples and data in the Danish and Finnish cases is increasingly premised on benefits that are valued in the private sector; thus, it is unclear to what extent such changes can be managed solely through an informed consent process. This is even more pertinent for cases with undermined informed consent and for people who are unaware that their samples and data are being used for secondary purposes. In the following section, I discuss the emergence of the testbed nation to facilitate an understanding of the changing significance of informed consent in the secondary use of health care data and biobanking.

TH E EME RGE NCE O F T H E TESTBE D N AT I O N At the beginning of the millennium, the Australian startup Autogen signed an agreement with the Tongan government to perform genetic analysis of the Tongan population as part of a study on obesity and diabetes. Shortly after the agreement was signed, a controversy arose within the Tongan community, initiated by those objecting to the process that led to the agreement. Although the Tongan government and Autogen had emphasized that the research would be conducted with individuals’ informed consent, there were strong objections to the lack of community engagement. While the government and company regarded individual informed consent as the gold standard of medical research, the Tongan people noted that the research involved the collection of genetic information that related to the whole community and therefore extended beyond the concept of the individual. Thus, informed consent was not sufficient to address the community’s concerns. Autogen’s approach also reflected a particular vision of small populations as useful case studies for researching genes in isolated populations. More importantly, however, was the way in which Autogen 324 

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had framed Tonga as a “laboratory community.”18 Laboratory communities refer to small and often isolated populations, such as the Amish or Hutterites,19 which confer a statistical benefit to identifying disease-causing genes.20 Laboratory communities are a precursor to the notion of testbed nations. The way in which both concepts view a particular population is related to how they contribute to the production of scientific knowledge. In this sense, they share an epistemic similarity despite their differing terms of scale. While laboratory communities tend to refer to small communities, a testbed nation refers to a national population and thus can represent millions of people. The Danish PKU cards provide an example of a testbed nation, as a card has been stored for every individual born in Denmark since 1982. To date, more than 2 million cards have been collected. Similarly, in Finland, the notion of a testbed nation is represented by the availability of comprehensive data and samples drawn from the Finnish population as well as by the infrastructure (legislation and IT systems) that ensures these resources are readily available. The emergence of the notion of a testbed nation reflects a significant shift in the approach that some countries have taken to making population data available for research. In this chapter, I have used examples from two Nordic countries, Denmark and Finland, to examine the development of the testbed nation and reflect upon the important changes surrounding the discussions of informed consent and data use ethics. Within this context, the Nordic countries differ from most other nations. All Nordic countries allocate each citizen or permanent resident a unique personal identification number.21 This number has a wide variety of applications; for example, it can be used for health care transactions, taxation, schooling, and public libraries. Private companies, such as banks and insurance companies can also use the PIN to identify individuals. The PIN facilitates both the administration of populations as well as the processing of population data.22 The Danish journalist Lone Frank once likened the whole of Denmark to being a cohort:23 every person in Denmark who has a PIN

can potentially be a source of data for research. While Frank was specifically referencing epidemiological research, the notion of a testbed nation is much broader because the PIN facilitates the linking of multiple and diverse data resources. But what is a testbed? A testbed is often described as a research environment in which developers can test and develop new products or concepts. Although it is generally used to test devices or programs, the idea of a testbed nation can represent a transformative process in which population data are made accessible or available within a virtual environment. Recent examples of these environments include cloud computing solutions, or so-called data sand boxes or data lakes, which signify a change in the way large quantities of data are managed and accessed. Louise Amoore has defined the ethical dimensions of this phenomenon as cloud ethics, which “is concerned with the political formation of relations to oneself and to others that is taking place, increasingly, in and around algorithms.”24 Testbed nations, therefore, create new spaces in which population data become the object of calculations and experimentation. Instead of just working with tangible devices, testbed nations can also provide virtual data laboratories that recreate a nation in the form of a digital twin, which, in turn, generates savings in time and money when testing new ideas or modeling possible changes to the national environment. Within the Danish context, an additional example of a testbed nation is the marketing of the term “Trial Nation,” which is used to present Denmark as an ideal location for conducting randomized clinical trials. Randomized clinical trials are often an expensive and time-consuming aspect of new drug development. At the same time, there is no guarantee that a drug will be approved if the trials reveal unintended side effects. To address these concerns, state-collected resources can be used to support clinical trials, a concept advocated by the Danish Trial Nation: Trial Nation offers a single, national entry point for life science companies, patient organisations and clinical researchers wishing

to sponsor, participate in, and conduct clinical trials in Denmark.25 Trial Nation exemplifies how data supply chains are being configured at a national level to facilitate easy and efficient access to reliable population-level data. Nordic countries have faced challenges when working with their often fragmented and varied data resources, which are managed and governed by different authorities and institutions. This fragmentation has been a barrier to the efficient use of these resources by researchers and companies. Consequently, Nordic countries, such as Denmark, have sought to develop a single entry point for access to their broad range of national data repositories. These entry points simplify the access to population data as well as streamline the often complex and time-consuming authorization processes. By developing these concepts associated with a Trial Nation, states can focus on improving their data supply chains to increase the potential of value creation. In Finland, policy documents have included the term “testbed nation” to market and attract research collaboration and investment. For example, Sitra, a government-funded think tank tasked with exploring and developing new business opportunities, has used the term. Sitra developed a series of slides26 that market and brand Finland and its population as an ideal resource for conducting research.27 The slides specifically highlight Finland’s highly digitalized health care system, its legislative infrastructure that encourages research, its willing population,28 and its supportive government. Although these features may not link directly to consent, they are central requirements for the development of a testbed nation whose goal is to facilitate the efficient operation of data supply chains. An important feature of becoming a testbed nation is that the national resources become the targets of the state’s marketing and branding strategies. “Data ecosystem” is a recent term used by governments in policy documents to describe the “complex networks of organizations and individuals that exchange and use data as a main resource. . . . Such

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ecosystems provide an environment for creating, managing and sustaining data sharing initiatives.”29 Data ecosystems are at the heart of developing testbed nations, as they help data controllers and managers make data more readily available. The notion of the data ecosystem is important when describing how the structures and connections between different data-managing organizations are brought together to form networks that facilitate efficient access and the movement of data and other resources.

MARKE TING NAT I O NA L R E SO U R C E S The populations that provide data can become targets of marketing and branding when data supply chains are reorganized to facilitate easier access to focused information. Population data fall under the scope of national resources; therefore, it also attracts the attention of organizations developing country-branding strategies. Country branding or nation branding is the process by which various national actors, such as tourism boards, seek to promote a nation’s investment or tourism opportunities.30 Marketing a nation’s scientific and innovative capacity utilizing population data is a form of population branding: unique images and visions of both the nation and its population are created using advertising techniques derived from the commercial sector.31 When examining testbed nations, it is notable that the advertising techniques and methods developed by the commercial sector are increasingly being employed within state operations. As a result, the traditional model of democracy through representation is gradually replaced by images and messages that reference a specific population, an approach developed and defined within the boundaries of a marketing and advertising company. Over time, it can become difficult to resist and contest the ways in which advertising campaigns portray and represent a given population. In relation to the discussion of informed consent, I argue that the processes being developed have a significant bearing on the relationship between the state and the population that provides the data. 326 

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CO N C LU S I O N This chapter has explored the ethical dimensions of data collection and use in relation to state practices within the Nordic countries. I have discussed how the changes in the organization of Denmark and Finland’s data supply chains have challenged the traditional notions and practices surrounding informed consent. Accordingly, I have asked whether a better framework is required to understand and govern how states collect and use population-based data. In its traditional form, consent has always focused on the individual and notions such as autonomy. However, because of the new practices surrounding the secondary use of health care information and biobanking samples, state-controlled data collection is moving toward a different ethos: the state collects data for a purpose that is broader than a single specific research project. Their goals include the development of commercial enterprises that derive their value from data. Thus, data are not just a research resource, but also an asset that the state actively markets to attract business and investment. From this perspective, the state expects individuals to serve as a base for the state’s wealth production by generating data that can be used for future research. In broader terms, this change reflects how state policies have begun to copy, translate, and implement the business models developed by the private sector.

N OT E S 1.  Nana Kongsholm et al., “Challenges for the Sustainability of University-Run Biobanks,” Biopreservation and Biobanking 16, no. 4 (2018): 312–21, https://doi.org/10.1089 /bio.2018.0054. 2.  Kenneth Cukier and Viktor Mayer-Schoenberger, The Rise of Big Data: How It’s Changing the Way We Think about the World (Princeton, NJ: Princeton University Press, 2014). 3.  Marion Fourcade and Jeffrey Gordon, “Learning Like a State: Statecraft in the Digital Age,” Journal of Law and Political Economy 1, no. 1 (2020): 78–108, https://doi .org/10.5070/LP61150258. 4.  Alain Desrosières, The Politics of Large Numbers: A History of Statistical Reasoning (Boston, MA: Harvard University Press, 1998). 5.  Nick Couldry and Ulises A. Mejias, The Costs of Connection (Stanford: Stanford University Press, 2019). Aaro

Tupasela, “Populations as Brands in Medical Research: Placing Genes on the Global Genetic Atlas,” BioSocieties 12, no. 1 (2017): 47–65, https://doi.org/10.1057/s41292 -016-0029-9. 6. Heta Tarkkala, Ilpo Helén, and Karoliina Snell, “From Health to Wealth: The Future of Personalized Medicine in the Making,” Futures 109 (2019): 142–52, https:// doi.org/10.1016/j.futures.2018.06.004. 7.  Craig Dalton and Jim Thatcher, “What Does a Critical Data Studies Look Like, and Why Do We Care? Seven Points for a Critical Approach to ‘Big Data,’” Society and Space (May 12, 2014), https://www.societyandspace.org /articles/what-does-a-critical-data-studies-look-like -and-why-do-we-care. Andrew Iliadis and Federica Russo, “Critical Data Studies: An Introduction,” Big Data and Society 3, no. 2 (2016) doi.org/10.1177/2053951716674238. Rob Kitchin and Tracey Lauriault, “Towards Critical Data Studies: Charting and Unpacking Data Assemblages and Their Work,” in Thinking Big Data in Geography: New Regimes, New Research, eds. J. Thatcher, A. Shears, and J. Eckert (Lincoln: University of Nebraska Press, 2018), https://ssrn.com /abstract=247411. 8.  European Health Data Space website, https://ec.eu ropa.eu/health/ehealth/dataspace_en, accessed November 9, 2021. 9.  FAIR data principles website, https://www.force11 .org/group/fairgroup/fairprinciples, accessed November 9, 2021. 10.  GAIA-X website, https://www.data-infrastructure .eu/GAIAX/Navigation/EN/Home/home.html, accessed November 9, 2021. 11.  Mark Sheehan, “Can Broad Consent Be Informed Consent?,” Public Health Ethics 4, no. 3 (2011): 226–35, https:// doi.org/10.1093/phe/phr020. Kristin Solum Steinsbekk, Bjorn Kare Myskja, and Berge Solberg, “Broad Consent versus Dynamic Consent in Biobank Research: Is Passive Participation an Ethical Problem,” European Journal of Human Genetics 21, no. 9 (2013): 897–902, https://doi.org/10.1038 /ejhg.2012.282. 12.  Jane Kaye et al., “Dynamic Consent: A Patient Interface for Twenty-First Century Research Networks,” European Journal of Human Genetics 23, no. 2 (2015): 141–46, https://doi.org/10.1038/ejhg.2014.71. 13. Francisca Nordfalk and Klaus Hoeyer, “The Rise and Fall of an Opt-out System,” Scandinavian Journal of Public Health 48, no. 4 (2020): 400–404, https://doi.org/10 .1177/1403494817745189. 14.  Kerina H. Jones et al., “The Other Side of the Coin: Harm due to the Non-use of Health-Related Data,” International Journal of Medical Informatics 97 (2017): 43–51, https:// doi.org/10.1016/j.ijmedinf.2016.09.010. 15.  Jake Metcalf, “Human-Subjects Protections and Big Data: Open Questions and Changing Landscapes,” Data and Society Research Institute, http://www.datasociety.net/, accessed November 9, 2021.

16.  Conor Douglas et al., “The Politics of Representation in the Governance of Emergent ‘Secondary Use’ Biobanks: The Case of Dried Blood Spot Cards in the Netherlands,” Studies in Ethics, Law, and Technology 6, no. 1 (2012): Article 4, https://doi.org/10.1515/1941-6008.1178. 17.  Marjut Salokannel, Heta Tarkkala, and Karoliina Snell, “Legacy Samples in Finnish Biobanks: Social and Legal Issues Related to the Transfer of Old Sample Collections into Biobanks,” Human Genetics 138, no. 11 (2019): 1287–99, https://doi.org/10.1007/s00439-019-02070-0. 18.  Rada Rouse, “Tonga Joins List of Laboratory Communities,” Nature Medicine 7, no. 1 (2001): 8, https://doi .org/10.1038/83413. 19. Mauricio Arcos-Burgos and Maximilian Muenkes, “Genetics of Population Isolates,” Clinical Genetics 61, no. 4 (2002): 233–47, https://doi.org/10.1034/j.1399-0004.2002 .610401.x. 20. Aaro Tupasela, Karoliina Snell, and Heta Tarkkala, “The Nordic Data Imaginary,” Big Data & Society 7, no. 1 (2020), https://doi.org/10.1177/2053951720907107. 21.  Marja Alastalo and Ilpo Helén, “A Code for Care and Control: The PIN as an Operator of Interoperability in the Nordic Welfare State,” History of the Human Sciences (2021), doi.org/10.1177/09526951211017731. 22. Susanne Bauer, “From Administrative Infrastructure to Biomedical Resource: Danish Population Registries, the ‘Scandinavian Laboratory,’ and the ‘Epidemiologist’s Dream,’” Science in Context 27, no. 2 (2014): 187–213, doi:10 .1017/S0269889714000040. 23.  Lone Frank, “When an Entire Country Is a Cohort,” Science 287, no. 5462 (2000): 2398–99, doi:10.1126/science .287.5462.2398. 24. Louise Amoore, Cloud Ethics—Algorithms and the Attributes of Ourselves and Others (Durham, NC: Duke University Press, 2020), 7. 25.  Trial Nation website, https://trialnation.dk/, accessed November 9, 2021. 26. Sitra slides, Finland—Your Testbed for the Next Generation Research & Medical Innovation, 2015, https://www .slideshare.net/SitraHyvinvointi/finland-your-testbed-for -the-next-generation-research-medical-innovation, accessed November 9, 2021. 27. Tupasela, Populations as Brands. 28.  Karoliina Snell and Heta Tarkkala, “Questioning the Rhetoric of a ‘Willing Population’ in Finnish Biobanking,” Life Sciences, Society and Policy 15, no. 1 (2019): 1–11, https:// doi.org/10.1186/s40504-019-0094-5. 29.  Marcelo Oliveira and Bernadette Farios Lóscio, “What Is a Data Ecosystem?,” ACM International Conference Proceeding Series 18 (2018): 1–9, doi.org/10.1145/3209281.3209335. 30. Melissa Aronczyk, Branding the Nation: The Global Business of National Identity (Oxford: Oxford University Press, 2013). 31. Tupasela, Populations as Brands.

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CHAPTER 28

AI in Medical Practice Karin Jongsma and Martin Sand1

T

he use of advanced data analytics, algorithms, and artificial intelligence (AI)2 enables the analysis of complex and large data sets, which can be applied in many fields of society. In medicine, the development of AI has spawned optimism regarding the enablement of personalized care, better disease prevention, faster detection of illnesses, more accurate diagnosis and treatment of disease.3 AI systems are being developed in several forms, ranging from very simple and transparent models (symbolic AI) to sophisticated self-learning neural networks (non-symbolic AI) that continuously iterate and adapt their own analysis procedures.4 In medicine, such self-learning algorithms are developed to fulfill various functions and purposes: They are intended to be used to detect illnesses in medical image such as MRIs or X-rays,5 they can prioritize information or patient files,6 they can advance medical knowledge helping to identify causes of disease and develop treatments,7 and they can provide recommendations for medical decision-making.8 In particular, neural networks for imagine recognition technologies have sparked massive optimism in the past years.9 The training of such systems is typically done with thousands of data points. The accuracy after such a training phase can be tested by providing another set with known labeling (i.e., done by humans), after which the outcome of the algorithm 328

can be compared to the known labels. While many prototypical algorithms and models have been created and published, only few have been experimentally tested in clinical settings.10 Despite the strong academic attention and hyperbolic promises, medical AI is currently still rarely used in routine patient care. Furthermore, some studies have indicated that AI systems that seem promising in experimental settings only yield limited improvements in practice.11 AI technologies also find their ways into the programming of advanced medical robots that are currently being developed to assist surgery and other tasks that require fine motor skills. Recently, their potential has also been underscored as tools to perform surgery on contagious patients.12 These medical robots usually combine both symbolic and non-symbolic AI technologies to recognize objects invisible or intractable to human vision and sense. As in other medical disciplines, where AI systems are envisioned, these robots are most desired for contexts in which doctors perform rather monotonous, routine, and time-consuming tasks, such as suturing.13 Additionally, the application of artificially intelligent robots is envisioned for the care context, as a form of ambient living, as support or replacement for nurses, to decrease the physically burdensome tasks of nurses and increase the safety of patients and elderly (e.g., assisting mobility, sanitary procedures, reporting mobility issues).14 Regarding this latter context, ethical

concerns have been raised about the lack of human touch in elderly care, increased objectification, loss of personal liberty, and infantilization.15 In the following, we will focus on a number of ethical issues that exceed the various domains of application of medical AI and discuss problems that pervade the deployment of AI in medicine more generally. The ethical implications of medical AI are various as they include the promises and speculations about its effects; the collection, use, and storage of data; the quality and application context of the algorithms; and the implementation in clinical practice.16 Furthermore, much of the debate on medical AI is based on hopes and expected benefits of AI, indicating the need for ethical guidance to responsibly develop these technologies. In this chapter, we will provide an overview of the ethical implications of medical AI that are most fervently discussed in bioethics and philosophy of technology. We will first explore in more detail some fields of application of medical AI and then focus on the ethical challenges of AI for privacy and data protection, patient autonomy, explainability, and responsibility. We will conclude with a summary and an outlook, where we will consider those technologies from a broader perspective. As often when new technologies emerge; they are accompanied with vast promises, hopes, and hype.17 We will outline why awareness of these visions’ significance is warranted and how a better understanding of these visions can teach us valuable lessons about medical AI’s scope and limits.

F IELDS OF AP P L I C AT I O N Image -Driven Diagnostics Machine learning and deep learning have proven to be particularly suitable for image processing and pattern recognition. This may explain why the majority of current and proposed AI applications in medicine are used to aid image-based diagnostics in fields like radiology and pathology.18 Furthermore, important preconditions such as the infrastructure and storage of digital images are increasingly available. Since a large part of the workload of radiologists is to work

of radiologists consist of the interpretation of medical images,19 diagnostic AI applications could increase this capacity, support or take over this task, and thereby change the way image-driven diagnostic is organized.20 Some studies have indicated that AI systems can perform equal to expert radiologists and pathologists or even outperform them when detecting, classifying, and segmenting tumors in ultrasonography, X-ray imaging, MRI scans, and digitalized microscopy slides.21 Results like these have raised enthusiasm and fueled the motivation to develop and employ algorithms in image-driven diagnostics. However, the introduction of medical AI in those fields also faces obstacles and ethical challenges. There is, for example, a lack of expertly annotated images to train the algorithms, and images used in digital pathology are extremely large. While neural networks work on much smaller images, down-sampling these images had the downside that crucial information may be lost.22 There are also more fundamental issues at hand, including the non-Boolean nature of diagnostic tasks23 and that specific decisions made by opaque AI systems are not interpretable for the human physician, an aspect to we will return to later on.

Clinical Decision Suppor t Systems and Data-Driven Research Medical AI is also developed for clinical decision support systems and data-driven research. These systems are generally trained by written input. This input can comprise coded text, but may also include digitalized handwritten or spoken natural language data. The data can originate from various sources such as biosensors with continuous output of physiologic metrics, and digitized medical records, but may also include non-health-related data, for example, information from social networks.24 An important motivation to employ AI-based clinical decision support systems in health care is the increasing amount of information in clinical care that has to be processed by medical practitioners. There is a growing array of scientific literature and guidelines with which physicians ought to grapple. Additionally, an increasing amount of information about A I in M edical P r actice 

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individual patients, including information such as blood pressure values, genetic information, and various types of behavioral and fitness data, is available. It is suggested that clinical decision-support systems can help to process and analyze this variety of information, especially to further tailor and “personalize” treatment and prediction. Such systems can process huge amounts of medical information and literature using a large number of variables, much larger than is usual in normal statistical studies. The hope and expectation are that such systems can predict more reliably the health outcome or can provide better treatment advice. However, critics highlight the limitations of those systems: The systems search for correlations between data points, which can be meaningless or accidental patterns in the data, without an adequate theory or hypothesis that is tested25 (see also note 2). Furthermore, opponents object to this “data fundamentalism” by arguing the need for theory-driven research and by pointing out the dangers of perceiving data-driven research as being “theory-free.”26 It is argued that data and datasets are neither neutral nor objective: Data obtainment is a value-laden practice, and the obtained data needs to be thoroughly interpreted before robust inferences can be made.

CO NVE RSATI O NA L AG E NTS Conversational agents (CA), or chatbots, are software programs computed to mimic human interaction, ranging from simple chatbots to embodied CA.27 A CA is a type of AI system that engages in a dialogue with its users, either by text, spoken language, or image and uses natural language processing (NLP) and understanding (NLU).28 NLP is the process of explaining a structure or a command to a machine in the natural language as used by humans, translating it into a format that a machine can process, generate, and translate back to the user. NLP and NLU aim to improve communication between humans and computers.29 Non-expert users can interact with such applications in their own language mimicking a conversation with another person. One of the most 330 

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important technical requirements for CAs is their robustness for unexpected input by the user and ability to learn and generate new language output. Potential application of CAs in medicine are foreseen in several fields, including general practice, genetic counseling, and mental health. In the context of genetic counseling, CAs could be suitable to complement or (partly) replace in-person conversations with persons identified to have a genetic disposition or with their family. Embodied conversational agents can, for example, be used in therapeutic computer games and virtual reality environments to provide interactive skills training for people on the autism spectrum, with depression and anxiety disorders.30 Embodied CAs with animated faces allow additional non-verbal communication.31 While CA technologies become increasingly more sophisticated to detect mood, tone, and intent, they are neither universally employed in clinical settings, nor are they validated for most populations. Empirical studies have shown promising results with regard to user satisfaction and usability, as perceived by chatbot users.32 Evaluation of more sophisticated CAs with speech input also demonstrated positive results on effectiveness, accuracy, and acceptability of the CA. Nevertheless, robust evaluations are still scarce, and further empirical evaluation is necessary.33

E T H I C A L CO N C E R N S There is a number of ethical issues that pervade all of the previously sketched fields of AI application in medicine. In the following, we will discuss a few issues that have attracted particular attention in the bioethics literature.

P R I VAC Y A N D DATA P R OT E C T I O N In medical AI ethics, much attention has been paid to issues around privacy and data protection, as AI needs to be fed with large amounts of data. These large amounts of data—”big data”—have been considered fuel to get the machinery of medical AI

properly running and seize its full potential. Big data is often seen as a necessary condition to realize the vast promises of medical AI.34 In a survey on existing AI regulations, Thilo Hagendorff has identified that the issue of privacy is among the most addressed in ethics guidelines for AI (eighteen of twenty-two guidelines mention privacy).35 Traditionally, in the context of medicine, there has been a strong focus on privacy as an aspect of doctors’ obligation to treat medical information confidentially.36 The confidentiality requirement is grounded in by two reasons: The first is that medical information is sensitive in that it can be used against the interest of a patient and undermine important rights and the unhindered pursuit of interests (see also the following section). Medical information, if publicly available, might consciously or unconsciously be used to discriminate against people in hiring decisions, political participation, financial matters, insurance cases, and other contexts.37 Hence, the practice of confidentiality ought to protect patients against harm. Even if such harm is unlikely to occur (because some medical information is trivial or irrelevant), the confidentiality obligation is considered to be strict, as it forms the fundament of the trusting relationship between doctor and patient.38 Like confidentiality, the notion of privacy contains two distinct, yet intertwined aspects: First, it is concerned with the idea of control over one’s personal information and, second, with the idea of (restricting) access by other parties to one’s personal information to prevent abuse, discrimination, and injustice.39 While not necessarily implied in a loss of control (one might lose a private, intimate notebook, which is found by someone else, who never reads it—thus one lost control, but no one else actually accessed one’s data), a loss of control over personal data implies an increased risk that others access this data. Privacy in the context of medical AI, relates to the aforementioned ideas of control, when it comes to the practice of consenting to data obtainment and to the idea of access in terms of data security. Defining consent clearly and regulating it in the context of medical AI that uses big data are challenging: Data that have formerly not been deemed medically relevant (searches

in Google, fitness data, and social media behavior), may become a viable source for an advanced algorithm to detect patterns in the data that are relevant for preventative or health-related measures. Data from Twitter, Facebook, and Instagram have already been used to reveal health information at the individual and population level to gain a greater insight into health habits, trends, and treatments and to identify risks and predict illnesses.40 Consenting to allow those platforms to obtain personal data, does not necessarily imply to consent to participate in medical data research. Furthermore, while individual benefits in sharing such data are unlikely to occur, the collective benefit of advancing medical research by doing so might be an overruling concern, justifying the utilization of such data, if anonymized and handled with care.41 Cases where loads of medical data have been shared without consent accompanied by public outcries42 underscore the temptation to harvest the potential of data collected in non-medical contexts and also explain why privacy leads the list of bioethical concerns regarding medical AI. Moreover, given the levels of sophistication of existing algorithms, it remains questionable whether anonymity and privacy of those who have not consented can be guaranteed, as identities may be deduced from combining various (anonymized) data points. Identities could be inferred from clusters of data: Health data from relatives of someone might contain relevant information about the person herself. Or, the fitness data of a friend, who has consented to participate in a medical study, might allow a sophisticated algorithm to draw inferences on your fitness levels if you are regularly training together.43 In this way, sustaining control over one’s personal information needs to increasingly consider indirect loss of control through breaches or voluntary loss of control of other people’s data. This suggests looking at privacy not only as an issue confined to the medical realm but as a wider transformation considered as the “datafication of society.”44 Another big challenge for medical AI is access as an aspect of data security; data to whose obtainment has been consented by a patient remains private only if they can be stored and communicated safely. A I in M edical P r actice 

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While numerous tools are being developed to ensure privacy-preserving AI,45 a recent study found that a large fraction of mobile health apps transmitted data insecurely (almost one-fourth) and almost one-third of providers did not share privacy policies, while a striking forty-seven percent provided those policies but failed to comply with them.46 The issue of access is further amplified as hospitals and other traditional health care institutions are no experts in data management and security. These institutions tend to outsource these tasks to private firms, whose experience and ethical oversight with medical research is limited. For instance, these firms’ awareness and recognition of the aforementioned confidentiality principle is arguably limited.47 Whether data protection laws, such as the European GDPR can effectively be enforced in the “‘Wild West’ of digital health research,”48 in which opaque and globally connected players share data, is questionable. To object to data obtainment and utilization at any time, is a right granted by the GDPR (Art. 21). However, to whom could a patient, who has been affected by the illegal transmission of health data by London’s Royal Free clinic to DeepMind, effectively object––now that Google Health in the United States has acquired large amounts of the data from DeepMind?49 It is not surprising that commentators, therefore, warn that privacy governance is lacking behind in an increasingly global and complex medico-technological environment.50

AUTONOMY The introduction of medical AI may support and challenge professional and patient autonomy. The introduction of medical apps and increased digital measurements can support patients’ autonomy in the sense that it enables them to gain insight into their health condition, manage their own illness, and can help them to communicate better with their health care providers.51 Some scholars warn that black-box algorithms can hamper patient autonomy in clinical decision-making.52 It is argued that the underlying model, data, and process of medical AI will be hard to understand for most patients, due to a lack 332 

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of technological literacy or due to the black-boxed nature of these algorithms, and it is therefore hard for them to exert agency over it.53 Others worry that medical AI may reintroduce a paternalistic model of decision-making, by ranking treatments according to their effectiveness for increasing the life-span of patients. The worry is that patients whose values do not align with the values that are built in the algorithm—for example, patients who would choose the minimization of their current suffering at all cost— may not have the possibility to choose a treatment based on these values, thereby having their patient autonomy threatened.54 Yet, others have argued that medical AI can include more and more personalized data in their computation, meaning that the advice of such algorithms could be more personalized than those of clinicians.55 It means that risk stratification, served by AI systems, would be better equipped to cater to diversity and patient-centered care, and could thereby support patient autonomy. While it is hoped that medical AI will support patient-centered care, one may wonder whether patient-centeredness can be reached by depending on larger sums of data points analyzed by an AI algorithm.56 The complex set of factors and values that constitute a person—that is relevant to patient-centered medicine—cannot be reduced to a bundle of data points. Further research is needed to find out whether and how AI-systems can be designed in such a way that they support patient autonomy or can be designed in such a way that patients are provided with meaningful options to choose from. It is suggested that the autonomy of health care professionals too may be threatened by medical AI. Medical AI might disrupt and even erode established clinical workflows, challenge the way in which physician’s knowledge is organized, and direct their behavior and decision-making. Due to the introduction of medical AI, there may be an epistemic loss in medical understanding and interpretation, when these systems are opaque.57 Empirical studies have indicated that health care professionals perceive an impact of medical AI on their autonomy, which also affects their willingness to use and accept these systems.58 Simultaneously, it is argued that AI,

specifically natural language processing algorithms, can support health care professionals in analyzing and structuring large sums of clinical data and guidelines, provided that the algorithms training is solid and supervised.59 Currently, medical AI systems are mostly applied in the form of clinical decision support systems, meaning that they provide input for medical decision-making, while health care professionals and patients can ultimately decide. It is reasonable to expect that further digitalization and use of more complex or opaque AI systems will continue to change clinical practice and the workflow of medical professionals. Given their increasing interactions with these new technologies, medical professionals will have to renegotiate their position and role in the digital transition. What skills and expertise may permissibly by outsourced to data-driven tools and which (new) competencies and tasks health care professionals should be possessed, is still being debated (see also the next section on responsibility). The promise of medical AI to have superior reliability, accuracy, and knowledge has fueled hopes for more patientcentered and reliable clinical decision-making. Whether these hopes become reality remains to be seen. The introduction of these systems clearly contains the risk of an epistemic incomprehensiveness; a less holistic view on patient’s perspectives, needs, and values, and an epistemic loss in terms of decreased medical understanding and explanations on the side of the medical professional.

R ESPONSIBILI T Y A ND R E TRIBUTION G A P S Like all technology, AI systems are imperfect. They can break and their application and functioning can fail. If the algorithm is mistaken, for example, by making the wrong diagnosis and/or recommending the wrong treatment, who should be held responsible for these mistakes? Algorithms, regardless of how sophisticated they are, are unable to bear moral or legal responsibility: They are incapable of answering questions about their behavior and it is

meaningless to fine or imprison them. Therefore, in cases of harm to a patient, demands (justified or not) for retribution must remain unsatisfied; a responsibility or retribution gap emerges.60 But what about the humans that are still involved in some stages of the development and utilization of AI, the developers and doctors; are they not to be competent to answer and account for how they, for instance, took the outputs of an AI into account, or how they programmed it? Prima facie, there are two problems with holding the people involved responsible. First, as with other technologies, the problem of the many hands looms large: There are several parties involved in the development, testing and application of AI algorithms, meaning that it does not settle the question as to who specifically is responsible for which aspects and errors.61 Second, it is sometimes argued that because these algorithms are opaque, physicians cannot explain their outputs and, therefore, they do not have a proper understanding of their processing. They cannot answer as a proxy for the machine, they could only answer for their own act of taking machine advice into consideration. Would that suffice? To many, it seems that they cannot be held morally responsible.62 The discussion about responsibility gaps is cumbersome and topples over at least two distinct problems: Responsibility gaps are often discussed over a wide range of different fields and applications, where AI or autonomous systems are employed. These different fields encompass the application of drones in military contexts,63 the deployment of autonomous vehicles on public infrastructures,64 and medical AI in its potential future contexts of application for diagnosis and treatment.65 Demands for retribution in cases of harm might in the first two cases rather be addressed at the public institutions (or combatant groups) that are in charge of the operation or the public infrastructure, or the companies that produce the technologies in general:66 Those are typical addressees of requests for compensation and, while oftentimes opaque and in a sense running behind the technology, liability structures are indeed in place to cover negligent applications of autonomous or AI systems.67 Whether such liability would sufficiently satisfy the responsibility A I in M edical P r actice 

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demand, is however unclear. Maybe a more substantive moral responsibility is required? This leads us to the second issue that befuddles the responsibility gap discussion: The concept of responsibility itself is multi-faceted and its ordinary use, if not inconsistent, is at least ambivalent.68 Classic authors trace the origins of responsibility back to our moral sentiments toward others, sentiments that are open for minor revisions but are unlikely to ever resonate or be directed at inanimate objects.69 Others conceive of responsibility as the ability to answer—something which machines cannot, but (most) humans can do.70 In contrast to the public infrastructure and military case, in the medical context, the classic responsibility locus is the medical practitioner, who under normal circumstances bears full responsibility for negligent behavior and resulting damage. A doctor who relies on an AI system, might not be able to explain the output of such system and how it came about—she might be able to validate the output—but she might answer and justify why she took the output into account in her decision-making. She could outline that her previous experiences with the system have been positive and that the system has proven great results in pre-clinical trials. Whether or not such reasoning is sufficiently persuasive strongly depends on the context: Is she trying to console the victim of a medical treatment that went wrong, or defending herself at the court? The condition of answerability in its most general sense would be fulfilled: Bad answers are answers too. In this sense, answerability seems to be morally more substantive than the system of liability mentioned before. However, does answerability then satisfy the desire for retribution that some think is at stake in the medical context? Those, who underscore the overtness of responsibility in terms of public sanction, blame, and so on,71 will see answerability only as a necessary but insufficient condition of responsibility: They will have to analyze how and on which grounds to determine the degree of sanction or blame—if any—justifiable in cases of medical harm that involved medical AI. Is the medical professional ever an addressee of such overt responsibility or accountability? Thus, whether and how serious we take responsibility gaps to be, 334 

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depends on how we expose the problem in the first place and in which context. In line with the previous reasoning, recent literature has suggested to distinguish four different types of responsibility gaps of which one or more could be applicable in a given context.72 This literature also underscores these systems’ nature as “interconnected socio-technical systems, . . . relying on a complex texture of human agents and technical systems, such as bureaucracies or corporates,”73 thereby going beyond previous attempts to locate the responsibility gap in the triangle doctor-manufacturer-AI. To advance this issue in the context of medicine, a more substantive studies into the responsibility needs (answerability or retribution) of patients in the near future as well as a normative investigation into whether these needs are justifiable, are certainly due. Lastly, as in our brief exploration, this discussion oftentimes starts out with a view on the backward-looking question of responsibility: Who is to be held responsible, when the harm has occurred? Recently, authors have also pointed out that we should turn this table and also focus on how we can prevent damage from happening in the first place. Forward-looking responsibility has been alluded to as a way of lowering the possibility of failure and the emergence of responsibility gaps.74 Forwardlooking responsibilities are articulated as a means to raise awareness of doctors of their grown oversight responsibilities, to keep in check whether the AI systems decline in accuracy, whether they are still safe in terms of personal data protection, and whether the data that are being fed are of reasonable quality to name but a few. These competencies can meaningfully complement training schemas (such as EPAs) and, thereby, provide a fruitful shift of focus to the traditional responsibility gap debate.

EXPLAINABILITY In the literature, the opaqueness of black-box algorithms is often cited as a problem: The fact that we do not fully understand and cannot fully figure out how AI algorithms arrive at a certain recommendation or

output. This concerns mostly deep neural networks that are able to learn, meaning that they change the values of their nodes intractably. This also means that the working mechanisms of such algorithm are opaque. Some argue that explainability of such aslgorithms is an important condition for using them.75 Transparency of the working mechanisms is a frequently mentioned precondition for applying medical algorithms, but there are some caveats to be added. Is being able to explain such an algorithm always necessary or is it the case that much medical knowledge and practice is based on ad hoc decisions and heuristics that neither fulfills demands for explainability?76 Furthermore, in medicine, more technologies are used, of which doctors cannot explain in detail how they function; think, for example, of an MRI scanner. These are widely used and doctors are trained to interpret what real scores or images are, what they mean, and how to verify them. Also, we should not overestimate the importance of having explanations for what we do; in many situations in medicine it is initially enough to know that something works, without knowing exactly why ir works. Just think of the effects of aspirin or lithium, which have already been prescribed without it being clear exactly how the mechanism of action works. The question is therefore whether explainability should always be a requirement for the application of AI.77 Moreover, the whole motivation for using AI is its superior handling of large amounts of data. If we demand that only algorithms can be used that are transparent and that we can understand, then we probably won’t get much further than our own cognitive ability. If algorithms are proven reliable, in the sense that they are very often accurate, we have reasons to use them, even if they are not transparent.78

CO NCLUSION — V I SI O NS A ND TH E FUTURE O F ME D I C A L A I The present chapter illustrates that the foreseen fields of application of medical AI are varied, each inducing distinct normative concerns. Medical AI is developed to be eventually applied in various areas within

medicine ranging from general practice, radiology to surgery, as well as in various domains of health care including prevention, care and treatment. Clearly, medical AI also comprises a variety of different technologies of which we have only provided a rough overview. Therefore, the list of ethical issues that have been discussed in this chapter is merely indicative and far from being exhaustive. The ethical implications of a specific medical AI application are dependent on the specific properties, goals and fields of application and should, therefore, be carefully scrutinized also in relation to these contexts (we mentioned the particular concern in relation to elderly care before; concerns that have little bearing in other areas). Most of the described technologies in this chapter have not yet been introduced into routine patient care, they are being developed, and some have undergone limited pre-clinical validation. Whether they will be widely integrated in clinical practice depends on policy-makers, public decision-making, and whether legal and ethical concerns can be sufficiently addressed. The history of medical digitalization reminds us that not all once fanciful envisioned technologies became widely adopted in medical practice: On the contrary, we tend to forget the many dead ends into which technological promises lured us. When looking at the history of medicine, expectations regarding the potential of computer-aided diagnosis go back as far as the 1960s.79 While machine learning as a new tool for image analysis breathed new life into this old vision, it yet has to prove that it can resolve the issues that have slowed the introduction of computer-aided technologies into the diagnostic process, which seemed rather profane: There were no efficiency gains as radiologists had to continue validating all images and approve and disapprove the results: “For every true-positive cancer detected by CAD [computer assisted diagnosis] there were more false-positives, which had to be ignored by radiologists. CAD did not help radiologists who already had a high sensitivity. Far from being helpful, CAD was like a monkey on the shoulder of radiologists, who subsequently had to silence the several false predictions suggested by CAD.”80 As long as AI diagnostics remain focused on only one type of A I in M edical P r actice 

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cancer, thus operate task specific, they might even hamper radiological work. In this manner, the idea of assessing AI “performance” must be expanded to include not only comparisons between accuracy of AI vs. doctors regarding one type of cancer, but should also include efficiency, efficacy, and patient outcomes. More generally, whether emerging technologies work in practice or not, depends not only on their effectiveness as isolated entities. More important is how well equipped the humans are that interact with them and whether they and their patients are willing to trust and accept to a certain degree their relative autonomy. The very fact, however, that medical AI is being discussed as a technological solution to a number of real and perceived problems in health care and medicine, constitutes in itself a fact worthy of critical and hermeneutic understanding.81 One of the most pressing questions is whether the problems medical AI is supposed to solve really need a solution, let alone a technological one. Not all of the problems that medical AI is sought to respond to are medical in a narrow sense: One of medical AI’s most vocal promoters, Eric Topol,82 provides an analysis of the problems of health care bureaucracy, where inequalities and inefficiencies are embedded in the health care system, a problem that is particularly prominent in the United States and is of less relevance in the European or international context. The problems of equality that Topol mentions refer to the heterogeneity of quality of health care that varies from state to state and county to county. This further disadvantages already disadvantaged/ discriminated groups who have limited access to health care in rural areas and due to their enormous costs.83 These issues are well known and it remains an important task to critically assess the vision of medical AI and see whether a technological solution is indeed required for those societal problems (that cause health issues in their wake) or whether medical AI breaks a fly on a wheel in this regard, perpetuating the problem by driving the costs of medical procedures up and side-stepping simpler solutions such as changes in health-care governance.

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N OT E S 1.  Both authors have contributed equally to the manuscript. 2.  Ezio Di Nucci has pointed out that use of the concept “AI” in relation to machine learning systems in medicine is misleading as none of these tools are remotely on a par with the scope and depth of human intelligence, giving unnecessary rise to a discussion about risks that those systems do not actually pose (E. Di Nucci, “Should We Be Afraid of Medical AI? Journal of Medical Ethics 45, no. 8 [2019]: 556– 58). As we will argue in the Conclusion section, we believe insights such as these could be seen as one dimension of an advanced hermeneutic understanding of the semantics and visions of medical AI. 3.  A. L. Fogel and J. C. Kvedar, “Artificial Intelligence Powers Digital Medicine,” NPJ Digitital Medicine 1 (2018); E. J. Topol, “High-Performance Medicine: The Convergence of Human and Artificial Intelligence,” Nature Medicine 25 (2019) : 44–56. 4.  A. Esteva et al., “A Guide to Deep Learning in Healthcare,” Nature Medicine 25, no. 1 (January 2019): 24–29; E. H. Shortliffe, and M. J. Sepúlveda, “Clinical Decision Support in the Era of Artificial Intelligence,” JAMA 320, no. 21 (2018): 2199–200. 5.  P. Rajpurkar, J. Irvin, and K. Zhu, “CheXNet: Radiologist-Level Detection on Chest X-Rays with Deep Learning,” arXiv (2017). 6.  Z. Obermeyer and E. J. Emanuel, “Predicting the Future—Big Data, Machine Learning, and Clinical Medicine,” New England Journal of Medicine 375, no. 13 (2016): 1216–19. 7. It has been repeatedly argued, also in the context of the present debate, that the path from correlation to causation to an eventual successful medical intervention and treatment is not a one-way street (Alex John London. “Artificial Intelligence and Black-Box Medical Decisions: Accuracy versus Explainability,” Hastings Center Report 49, no. 1 [2019]: 15–21, esp. 17). AI that advances success rates regarding the first of those three steps cannot guarantee improvements regarding the latter. 8.  E. S. Berner and T. J. La Lande, “Overview of Clinical Decision Support Systems,” in Clinical Decision Support Systems: Theory and Practice, ed. E. S. Berner (Cham, Switzerland: Springer, 2016), 1–17; Fogel and Kvedar, “Artificial Intelligence Powers Digital Medicine.” 9.  E. J. Topol, Deep Medicine—How Artificial Intelligence Can Make Healthcare Human Again (New York: Basic Books, 2019). 10.  M. P. Sendak et al., “Sepsis Watch: A Real-World Integration of Deep Learning into Routine Clinical Care,” JMIR 8, no. 7 (2019): e15182; K. R. Courtright et al., “Electronic

Health Record Mortality Prediction Model for Targeted Palliative Care Among Hospitalized Medical Patients: A Pilot Quasi-experimental Study,” Journal of General Internal Medicine 34, no. 9 (2019): 1841–47; N. C. Dean, “Performance and Utilization of an Emergency Department Electronic Screening Tool for Pneumonia,” JAMA, 173, no. 8 (2013): 699–701; Gulshan et al. “Development and Validation of a Deep Learning Algorithm for Detection of Diabetic Retinopathy in Retinal Fundus Photographs,” Journal of the American Medical Association 316, no. 22 (2016): 2402–10. 11.  Travers Ching et al., “Opportunities and Obstacles for Deep Learning in Biology and Medicine,” Journal of Royal Society Interface 15 (2018): 20170387; R. Miotto et al., “Deep Learning for Healthcare: Review, Opportunities and Challenges,” Briefings in Bioinformatics 19, no. 6 (2018): 1236–46. 12.  A. Zemmar, A. M. Lozano, and B. J. Nelson. “The Rise of Robots in Surgical Environments during COVID19,” Nature Machine Intelligence 2, no. 10 (2020): 566–72. 13.  E. Svoboda, “Your Robot Surgeon Will See You Now,” Nature 573 (2019): S110-S111. 14.  H. Lee et al., The Purpose of Bedside Robots: Exploring the Needs of Inpatients and Healthcare Professionals,” CIN: Computers, Informatics, Nursing 38 (2020). 15.  A. Sharkey and N. Sharkey, “Granny and the Robots: Ethical Issues in Robot Care for the Elderly,” Ethics and Information Technology 14 (2012): 27–40. 16.  T. Hagendorff, “The Ethics of AI Ethics: An Evaluation of Guidelines,” Minds and Machines 30, no. 1 (2020): 99–120; M. Ruckenstein and N. Schüll, “The Datafication of Health,” Annual Review of Anthropology 46 (2017): 261–78. 17. E. Simakova and C. Coenen, “Visions, Hype, and Expectations: A Place for Responsibility,” in Responsible Innovation., eds. R. Owen, J. R. Bessant, and M. Heintz (Chichester, UK: John Wiley & Sons, 2013), 241–66; L. Floridi, “AI and Its New Winter: From Myths to Realities,” Philosophy & Technology 33, no. 1 (2020): 1–3. 18.  A. Hosny et al., “Artificial Intelligence in Radiology,” Nature Reviews Cancer 18, no. 8 (2018): 500–510; F. Jiang et al., “Artificial Intelligence in Healthcare: Past, Present and Future,” Stroke and Vascular Neurology 2, no. 4 (2017): 2430–31; F. Pesapane, M. Codari, and F. Sardanelli, “Artificial Intelligence in Medical Imaging: Threat or Opportunity? Radiologists Again at the Forefront of Innovation in Medicine,” European Radiology Experimental 2 (2018): 1–10. 19.  E. S. McDonald et al., “Baseline Screening Mammography: Performance of Full-Field Digital Mammography Versus Digital Breast Tomosynthesis,” American Journal of Roentgenology 205, no. 5 (2015): 1143–48. 20. A. Tang et al., “Canadian Association of Radiologists White Paper on Artificial Intelligence in Radiology,” Canadian Association of Radiologists Journal 69, no. 2 (2018): 120–35. 21.  B. Ehteshami Bejnordi et al., “Diagnostic Assessment of Deep Learning Algorithms for Detection of Lymph Node Metastases in Women with Breast Cancer,” JAMA 318, no.

22 (2017): 2199–210; M. Ghafoorian et al., “Deep Multi-scale Location-Aware 3D Convolutional Neural Networks for Automated Detection of Lacunes of Presumed Vascular Origin,” Neuroimage: Clinical 14 (2017): 391–99. 22.  H. R. Tizhoosh and L. Pantanowitz, “Artificial Intelligence and Digital Pathology: Challenges and Opportunities,” Journal of Pathology Informatics 9 (2018): 38. 23.  G. P. Pena and Jde S. Andrade-Filho, “How Does a Pathologist Make a Diagnosis?,” Archives of Pathology & Laboratory Medicine 133, no. 1 (2009): 124–32. 24.  B. Mittelstadt and L. Floridi, eds., The Ethics of Biomedical Big Data (Switzerland: Springer, 2016). 25.  London, “Artificial Intelligence and Black-Box Medical Decisions,” 15–21; J. Stegenga, Medical Nihilism (Oxford: Oxford University Press, 2018). 26.  T. Sharon, “The Googlization of Health Research: From Disruptive Innovation to Disruptive Ethics,” Personalized Medicine 13, no. 6 (2016): 563–74. 27. D. D. Luxton, “Ethical Implications of Conversational Agents in Global Public Health,” Bulletin of the World Health Organization 98, no. 4 (2020): 285; J. D. McGreevey, C. W. Hanson, and R. Koppel, “Clinical, Legal, and Ethical Aspects of Artificial Intelligence–Assisted Conversational Agents in Health Care,” JAMA 324, no. 6 (2020): 552–53; E. Ruane, A. Birhane and A. Ventresque, “Conversational AI: Social and Ethical Considerations,” AICS (2019): 104–15. 28.  Ruane, “Conversational AI: Social and Ethical Considerations.” 29.  D. Perez-Marin and I. Pascual-Nieto, Conversational Agents and Natural Language Interaction: Techniques and Effective Practices (IGI Global, 2011). 30.  E. Hudlicka, “Virtual Affective Agents and Therapeutic Games,” in Artificial Intelligence in Behavioral and Mental Healthcare, ed. D. D. Luxton (San Diego: Elsevier/ Academic Press, 2015); D. D. Luxton, and A. Sirotin. “Intelligent Conversational Agents in Global Health,” in Innovations in Global Mental Health, ed. S. Okpaku (New York: Springer, 2020). 31.  Perez-Marin and Pascual-Nieto, “Conversational Agents and Natural Language Interaction. 32.  M. Milne-Ives et al., “The Effectiveness of Artificial Intelligence Conversational Agents in Health Care: Systematic Review,” Journal of Medical Internet Research 22, no. 10(2020): e20346; T. Nadarzynski et al., “Acceptability of Artificial Intelligence (AI)-Led Chatbot Services in Healthcare: A Mixed-Methods Study,” Digital Health 5 (2019): 2055207619871808. 33.  L. Tudor Car et al., “Conversational Agents in Health Care: Scoping Review and Conceptual Analysis,” Journal of Medical Internet Research 22, no. 8 (2020): e17158. 34. Mittelstadt and Floridi, “The Ethics of Biomedical Big Data,” 3. 35.  T. Hagendorff, “The Ethics of AI Ethics: An Evaluation of Guidelines,” Minds and Machines 30, no. 1 (2020): 99–120, esp. 103. A I in M edical P r actice 

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36.  M. H. Kottow, “Medical Confidentiality: An Intransigent and Absolute Obligation,” Journal of Medical Ethics 12, no. 3 (1986): 117–22; Beauchamp and Childress suggest that “confidentiality is a branch or subset of informational privacy,” pointing out though that not all privacy infringements are confidentiality infringements, but all confidentiality infringements can be understood as privacy infringements (T. L. Beauchamp and J. F. Childress, Principles of Biomedical Ethics [Oxford: Oxford University Press, 2001], 304). 37. J. van den Hoven, “Information Technology, Privacy, and the Protection of Personal Data,” in Information Technology and Moral Philosophy, eds. J. van den Hoven and J. Weckert (Cambridge, MA: Cambridge University Press, 2008), 301–21. 38.  Kottow, “Medical Confidentiality.” 39. van den Hoven, “Information Technology, Privacy, and the Protection of Personal Data”; K. Macnish, “Government Surveillance and Why Defining Privacy Matters in a Post-Snowden World,” Journal of Applied Philosophy 35, no. 2 (2018): 417–32. 40. C. Marino, et al., “The Associations between Problematic Facebook Use, Psychological Distress and WellBeing among Adolescents and Young Adults: A Systematic Review and Meta-analysis,” Journal of Affective Disorders 226 (2018): 274–81; J. A. Naslund et al., “Facebook for Supporting a Lifestyle Intervention for People with Major Depressive Disorder, Bipolar Disorder, and Schizophrenia: An Exploratory Study,” Psychiatric Quarterly 89, no. 1 (2018): 81–94; M. Terrasse, M. Gorin, and D. Sisti, “Social Media, E-Health, and Medical Ethics,” The Hastings Center Report 49, no. 1 (2019): 24–33. 41. Mittelstadt and Floridi, “The Ethics of Biomedical Big Data.” 42.  A. Hern, “Royal Free Breached UK Data Law in 1.6m Patient Deal with Google’s DeepMind,” The Guardian, 2017. 43.  S. B. Pan, “Get to Know Me: Protecting Privacy and Autonomy under Big Data’s Penetrating Gaze,” Harvard Journal of Law & Technology 30 (2016): 239. 44.  K. van Es and M. T. Schäfer, The Datafied Society: Studying Culture through Data (Amsterdam: Amsterdam University Press, 2017). 45. B. Baron and M. Musolesi, “Interpretable Machine Learning for Privacy-Preserving Pervasive Systems,” IEEE Pervasive Computing 19, no. 1 (2020): 73–82. 46.  G. Tangari et al., “Mobile Health and Privacy: Cross Sectional Study,” BMJ 373 (2021): n1248, doi: 10.1136/bmj .n1248. 47.  Sharon, “The Googlization of Health Research.” 48.  C. Nebeker, J. Torou, and R. J. Bartlett Ellis, “Building the Case for Actionable Ethics in Digital Health Research Supported by Artificial Intelligence. BMC Medicine 17 (2019): 137. 49.  J. Vincent, “Privacy Advocates Sound the Alarm after Google Grabs DeepMind UK Health App,” The Verge, 2018,

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https://www.theverge.com/2018/11/14/18094874/goo gle-deepmind-health-app-privacy-concerns-uk-nhs-medi cal-data, accessed October 5, 2021. 50.  B. Murdoch, “Privacy and Artificial Intelligence: Challenges for Protecting Health Information in a New Era,” BMC Medical Ethics 22, no. 1 (2021): 122. 51.  K. R. Jongsma et al., “How Digital Health Affects the Patient-Physician Relationship: An Empirical-Ethics Study into the Perspectives and Experiences in Obstetric Care,” Pregnancy Hypertension 25 (2021): 81–86. 52.  T. Grote and P. Berens, “On the Ethics of Algorithmic Decision-Making in Healthcare,” Journal of Medical Ethics 46, no. 3 (2020): 205–11; E. Vayena, A. Blasimme, and I. G. Cohen, “Machine Learning in Medicine: Addressing Ethical Challenges,” PLoS Medicine 15, no. 11 (2018): e1002689; J. Morley et al., “The Ethics of AI in Health Care: A Mapping Review,” Social Science & Medicine 260 (2020), https://doi .org/10.1016/j.socscimed.2020.113172. 53.  B. L. DuFault and J. W. Schouten, “Self-Quantification and the Datapreneurial Consumer Identity,” Consumption Markets and Culture (2018): 1–27. 54.  R. J. McDougall, “Computer Knows Best? The Need for Value-Flexibility in Medical AI,” Journal of Medical Ethics 45, no. 3 ( 2019): 156–60. 55.  E. Di Nucci, “Should We Be Afraid of Medical AI?,” Journal of Medical Ethics 45, no. 8 (2019): 556–58. 56.  J. C. Bjerring and J. Busch “Artificial Intelligence and Patient-Centered Decision-Making” Philosophy & Technology 34 (2021): 349–71. 57.  Bjerring and Busch, “Artificial Intelligence and Patient-Centered Decision-Making.” 58. M. Sambasivan et al., “Intention to Adopt Clinical Decision Support Systems in a Developing Country: Effect of Physician’s Perceived Professional Autonomy, Involvement and Belief: A Cross-Sectional Study,” BMC Medical Informatics and Decision Making 12 (2012): 142; L. Strohm, et al., “Implementation of Artificial Intelligence (AI) Applications in Radiology: Hindering and Facilitating Factors,” European Radiology 30 (2020): 5525–32. 59.  Bjerring and Busch, “Artificial Intelligence and Patient-Centered Decision-Making”; A. Holzinger, B. Haibe-Kains, and I. Jurisica, “Why Imaging Data Alone Is Not Enough: AI-Based Integration of Imaging, Omics, and Clinical Data,” European Journal of Nuclear Medicine and Molecular Imaging 46, no. 13 (2019): 2722–30. 60.  J. Danaher, “Robots, Law and the Retribution Gap,” Ethics and Information Technology 18, no. 4 (2016): 299–309, doi: 10.1007/s10676-016-9403-3; A. Matthias, “The Responsibility Gap: Ascribing Responsibility for the Actions of Learning Automata,” Ethics and Information Technology 6, no 3 (2004): 175–83, doi: 10.1007/s10676-004-3422-1. 61. B. D. Mittelstadt et al., “The Ethics of Algorithms: Mapping the Debate,” Big Data & Society 3, no. 2 (2016): 205395171667967.

62.  Grote and Berens, “On the Ethics of Algorithmic Decision-Making in Healthcare”; T. Grote and E. Di Nucci, “Algorithmic Decision-Making and the Problem of Control,” in Technology, Anthropology, and Dimensions of Responsibility, eds. B. Beck and M. Kühler (Stuttgart, Germany: J. B. Metzler, 2020), 97–113. 63.  R. Sparrow, “Killer Robots,” Journal of Applied Philosophy 24, no. 1 (2007): 62–77. 64.  J. Stilgoe, “Who’s Driving Innovation? (Cham, Switzerland: Palgrave Macmillan, 2020). 65.  Grote and Di Nucci, “Algorithmic Decision-Making and the Problem of Control.” 66.  It is quite obvious that the initial addressee of retribution demands are often not the ones to blame—consider someone dropped a vase in your living room, while being at first angry about the damage, you realize upon reflection that it has been an accident. Such change in perception and retribution demands invites for the debunking of traditional retribution gaps (S. R. Kraaijeveld, “Debunking [the] Retribution [Gap],” Science and Engineering Ethics 26 [2020]: 1315–28). 67.  H. Zech “Liability for AI: Public Policy Considerations,” ERA Forum 22 (2021): 147–58, doi: 10.1007/s12027020-00648-0. 68.  I. van de Poel, and M. Sand, “Varieties of Responsibility: Two Problems of Responsible Innovation,” Synthese 198, no. 19 (2021): 4769–87. 69.  P. Strawson, “Freedom and Resentment,” Proceedings of the British Academy 48 (1962): 187–211. 70. A. M. Smith, “Attributability, Answerability, and Accountability: In Defense of a Unified Account,” Ethics, 122, no. 3 (2012): 575–89. 71.  D. J. Coates and N. A. Tognazzini, “The Nature and Ethics of Blame,” Philosophy Compass 7, no. 3 (2012): 197– 207; A. M. Smith, “On Being Responsible and Holding Responsible,” The Journal of Ethics 11, no. 4 (2007): 465–84, doi: 10.1007/s10892-005-7989-5. 72.  F. Santoni de Sio and G. Mecacci, “Four Responsibility Gaps with Artificial Intelligence: Why They Matter and

How to Address Them,” Philosophy & Technology 34, no. 4 (2021): 1057–84, doi: 10.1007/s13347-021-00450-x. 73. Santoni de Sio and Mecacci, “Four Responsibility Gaps with Artificial Intelligence,” 1058. 74.  M. Sand, J. M. Durán, and K. R. Jongsma, “Responsibility beyond Design: Physicians’ Requirements for Ethical Medical AI,” Bioethics 36, no. 2 (2021): 162–69. 75.  J. Amann et al., “Explainability for Artificial Intelligence in Healthcare: A Multidisciplinary Perspective,” BMC Medical Informatics and Decision Making 20, no. 1 (2020) : 310; C. Rudin , “Stop Explaining Black Box Machine Learning Models for High Stakes Decisions and Use Interpretable Models Instead,” Nature Machine Intelligence 1, no. 5 (2019): 206–15. 76.  London, “Artificial Intelligence and Black-Box Medical Decisions.” 77.  London, “Artificial Intelligence and Black-Box Medical Decisions.” 78.  J. M. Durán and K. R. Jongsma, “Who Is Afraid of Black Box Algorithms? On the Epistemological and Ethical Basis of Trust in Medical AI,” Journal of Medical Ethics 47 (2021): 329–35. 79. K. Doi, “Computer-Aided Diagnosis in Medical Imaging: Historical Review, Current Status and Future Potential,” Computerized Medical Imaging and Graphics 31, nos. 4–5 (2007): 198–211. 80.  A. Kohli and S. Jha, “Why CAD Failed in Mammography,” Journal of the American College of Radiology 15, no. 3: 535–37, p. 535f. 81.  A. Grunwald, “Assigning Meaning to NEST by Technology Futures: Extended Responsibility of Technology Assessment in RRI,” Journal of Responsible Innovation 4, no. 2 (2017): 100–117. 82.  Topol, “Deep Medicine—How Artificial Intelligence Can Make Healthcare Human Again.” 83.  A. Case and A. Deaton, Deaths of Despair and the Future of Capitalism (Princeton, NJ: Princeton University Press, 2020).

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CHAPTER 29

Performance-Enhancing Drugs Thomas Søbirk Petersen

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do it and you probably do it too. The use of performance-enhancing drugs (PEDs) is widespread and part of many people’s lives.1 Let me give a few examples. We drink coffee and energy drinks for many reasons, but one is to boost our performance during sport, study, or work, as caffeine reduces tiredness2 and can improve, for example, motor skills.3 In addition, if we want to perform better at social events, we drink alcohol to get into a good mood and become more extrovert.4 In this chapter, however, the focus will be on the use of PEDs that are not part of mainstream culture (unlike coffee, for instance), and where the use, production, distribution, selling, and buying for non-medical use is banned and punishable by certain organizations (e.g., World Anti-Doping Agency) and/or the state.5 In particular, we will focus on arguments in the bioethical literature concerning if or when the use of PEDs is morally acceptable and what implications this has for whether it should be legally acceptable. In a handbook on Bioethics we cannot go into a detailed metaethical discussion about the relation between morality and the Law. But fortunately this is not necessary in this chapter. All we have to accept is the uncontroversial claims that moral arguments can and should influence what is and should be legal, and if there is nothing morally wrong with a practice it should not be illegal.

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But before directly addressing the moral issues surrounding PEDs, we must first specify what precisely is meant by “performance-enhancing drugs.” The use of PEDs is usually counterposed to drug use that is characterized as therapy. However, when humans use medical drugs or methods to combat injuries or diseases such as cancer, diabetes, HIV, or Covid-19, we are engaged in therapy, we want to make people healthy again. But, when humans use performance-enhancing drugs, scholars often mean drugs that are being used to enhance central human capabilities beyond their healthy state.6 In this chapter, I will stick to this way of drawing the distinction between therapy and enhancement. We should be aware, however, that the distinction is not always easy to draw.7 For example, are vaccines an instance of therapy or enhancement? It does seem to make sense both to regard vaccinations as a preventative therapeutic kind of intervention and as an enhancement of our immune system.8 But apart from mentioning one of the challenges in making a clear distinction, there are clear cases where it is appropriate to claim that drugs are administrated to or used by people who are not ill. Furthermore, we should be aware that PEDs are used in a wide variety of ways according to what type of capacity they aim to improve. In the bioethical “enhancement literature” it has therefore been

common to distinguish between different areas or capacities with respect to which PEDs are used. For example, the use of drugs to enhance physical capabilities,9 as well as capabilities within areas of cognition,10 mood,11 love,12 morality,13 reproduction,14 and life extension.15 However, this way of classifying PEDs has been challenged by researchers who argue that it is biologically or neurologically problematic to separate several of these aforementioned areas in any clear way.16 Nevertheless, in order not to complicate the presentation and critical discussion of some of the ethical perspectives of PEDs that will be the aim for the rest of this chapter, we shall primarily focus on what, in rough terms, can be called “physical enhancement” and “cognitive enhancement.” Physical enhancement involves, for example, the use of anabolic-androgenic steroids, or growth hormone to improve muscle strength. These types of interventions are used by, for example, athletes with the intention of improving sports performance or by gym-goers to enhance, for instance, muscle definition for aesthetic reasons. Cognitive enhancement involves, for example, the use of drugs like Ritalin or Modafinil to enhance cognitive capabilities such as memory, concentration, and alertness. These types of interventions are used by athletes, soldiers, pilots, students, and researchers, among others, with the intention of combatting fatigue and thereby improving the chances of winning or survival or to improve grades or job performance. Apart from the practical reason of not making things too complicated, the focus on physical and cognitive enhancement is also fueled by the fact that these drugs have existed for quite some time and are being used by a huge number of people compared to, for example, love- or morality-enhancement drugs. A study conducted in 2018 showed, for instance, that about 50 percent of elite athletes had used doping at least once within the previous year.17 Moreover, the lifetime use of non-medical PEDs for college students in the United States has been estimated to be 5–55 percent18 but 5–46 percent in Europe.19 Furthermore, many of the arguments for or against the use of physical and cognitive PEDs

can also be raised in ethical discussions on, for instance, mood enhancement, moral enhancement and life extension, although these areas of PEDs do also raise some of their own ethical issues.20

ETHICAL ISSUES In the following paragraphs, I will present and critically discuss some of the central ethical objections to legalize the use of physical and cognitive performance-enhancing drugs by healthy people. However, before doing so, an important notice on the effectiveness of PEDs on performance is appropriate. It is clear that doping in sport can enhance sports performance, especially if done under the supervision of doctors. For instance, even at low doses, anabolic steroids are capable of increasing muscle mass and the energy output of racing cyclists by 5–20 percent.21 Therefore, for athletes seeking the glory of victory, for example, fame, money, or big muscles, it will always be very tempting to use doping. In contrast, whether healthy people’s use of PEDs really can enhance their cognitive performance is still debated in the scientific community. The use of Modafinil, for example, which is a wakefulness-promoting agent used to treat narcolepsy, does according to some studies have a small to moderate attention-enhancing effect for executive functions (e.g., problem-solving) and work memory.22 Other studies, however, suggest that Moda­ finil does not have an effect on people with high IQ.23 Because of the lack of evidence for the effectiveness of cognitive enhancing drugs, some have argued that the existence of drugs that can cognitively enhance healthy people is a myth.24 However, new research on the effectiveness of the drugs currently available may prove otherwise. In addition, pharmaceutical research may in the future deliver drugs that are very effective in enhancing our cognitive capacities. These two prospects alone make it relevant to present and critically discuss the ethics of using drugs that can or are believed to enhance cognitive functions. Let us now consider the ethical objections to PEDs, beginning with an objection based on health.

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H EA LTH Few would deny that health is an important moral factor in evaluating the use of drugs. Therefore, it comes as no surprise that an often mentioned and important objection to the use of PEDs is that it will harm users by damaging their health. However, in order to evaluate this kind of objection we need to answer two very different questions. First, we need to know to what extent the use of PEDs is harmful to one’s health, which is a medical question. Second, we need to know whether, if the use of PEDs is in fact harmful, this constitutes a sufficient reason to ban their use, which is a bioethical question. Let me begin by answering the first question. With regard to doping in sport, there is strong evidence that it can be unhealthy to use it. Studies show, for example, that long-term use of anabolic steroids may cause cardiovascular disease, severe liver damage, depression, and lack of impulse control.25 However, there is also evidence that PEDs on the World Anti-Doping Agency’s (WADA) prohibited list can be either healthy to use or used in a way that is not unhealthy. Here are a few examples: After a tough stage in the Tour de France, riders’ bodies are drained of red blood cells and testosterone. In these situations, it can promote health if the riders are given red blood cells artificially and testosterone instead of letting them continue with a broken-down body.26 The quicker the body recovers, the quicker our immune system is reset and the less vulnerable we will be to infections and other diseases.27 Furthermore, several studies show that even though doping may sometimes benefit the health of athletes, certain forms of doping, for example, erythropoietin (EPO), can be safe if used within certain safety limits and under the supervision of doctors.28 With regard to health and the use of cognitive enhancement, there are some known side effects such as decreased appetite and insomnia. But the available evidence shows that severe negative effects of cognitive enhancement are very rare, although there is a lack of studies on the long-term harm of cognitive enhancers.29 In the bioethical discussion about whether PEDs for healthy people should be legalized, it is rarely 342 

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mentioned that lifting the ban may have some positive benefits for athletes’ health. I will mention in the following some of these benefits of lifting the ban on doping in sport. However, we should be aware that the same kinds of benefits also apply to the legalization of cognitive enhancement. In today’s environment of prohibition, we see how some types of drugs are produced in shady facilities without adequate control of product quality. We therefore have every reason to believe that the control of the quality, quantity, and use of drugs is poorer than it would be in an open and regulated market. Therefore, the first advantage of legalizing substances like EPO and anabolic steroids would be that doping in a market regulated by doctors and health authorities would probably be safer for users compared to the current unregulated and criminal market.30 A second advantage of legalizing doping is that athletes will avoid the health and welfare loss often associated with being punished for doping. This may be the health and welfare loss associated with the public humiliation and loss of earnings or social network that typically accompany the punishment for using drugs. However, even if we grant that doping can be harmful, this does not establish that it should be prohibited, because we would then need to consider the moral question of how much harm or risk of harm we will accept for autonomous athletes before something is prohibited. Prohibiting doping because it may be harmful is a viewpoint that does not correlate well with the fact that doing sport in itself can be unhealthy. For instance, some sports involve a direct danger to the athletes’ lives. American football, boxing, cycling, skiing, horse riding, and motor sports all claim several lives each year. Nevertheless, we do not tend to think that these risks are grounds for prohibiting well-informed and autonomous competent adults from choosing to participate in these sports. What we mean by an autonomous agent or athlete will be clarified in detail in the next section. This observation suggests that the health-based objection to doping commits a double standard: it claims that doping should be illegal because it is harmful, yet does not think that it should be illegal to participate

in sports that are by their very nature just as harmful as doping, if not more so. One way out of this double standard is to argue that the benefits of sport outweigh the harm of sport to such a degree that such activities should not be banned. This calculation is not true when banning doping, as the benefits of doping do not outweigh the harm of doping. But this way of arguing requires solid empirical evidence that is not easy to come by, especially when, as we have seen, there are some obvious benefits to the athlete’s health connected to decriminalizing or lifting the ban on PEDs for healthy people. Note that most sports associations do not believe that we should reduce the risk of injury to zero, since there are other values at stake in sports. Values that are sometimes allowed to trump the regard for athletes’ health. These values include suspense, entertainment, tradition, and intensity in competitive sports where we compromise with the safety and health of the athletes. If athletes’ health were our only moral concern, we would have to render sports unrecognizable. If we do not want sport to be harmful, we would probably only be able to allow certain board games like chess and backgammon. However, it should then only be permissible to play and spend time on these board games for a defined period of time, since hour-long board games might negatively affect mental health. Therefore, let us assume that few would believe, on reflection, that sports that might be harmful should also be banned. Or to put it in more general terms: If we accept that we should ban harmful acts, this would have the unreasonable consequence that we would also have to accept that driving a car, drinking alcohol, constructing subways and bridges, doing surgery, or using ice picks by definition should also be banned, as these actions too have caused harm to the people who are engaged in these activities. I guess that very few would accept such strict limits on peoples’ autonomy in order to protect their health. As a rule of thumb, autonomous people should be allowed to do what they want to unless they harm other people.31 In the bioethical literature, several attempts have been made to escape this double standard view

where it is accepted that harmful sports should not be banned while also accepting that doping in sports should be banned because it is harmful.32 One suggestion for arguing why we should accept harmful sports but not harmful doping is that the latter should be considered as an additional risk added to an already harmful sport. Therefore, by forbidding doping, you reduce the sum of health injuries to which the athletes are exposed. However, this line of thought faces two challenges. Firstly, the argument assumes that a doping ban would reduce the number of injuries to which athletes are exposed. However, as I have described earlier in this section, this is far from certain, since there are a number of advantages to legalizing doping. Secondly, the world of sports regularly accepts new measures that increase the number of injuries. Accepting new sports such as snowboarding or accepting new elements in ice skating or skate boarding as well as accepting that more people join traditional and harmful sports (such as American football) all increase the number of harmful acts in sports. But if you accept this increase in harmful acts, it seems to follow that you should also accept measures such as the use of PEDs, even if it increases the number of harmful acts among athletes.

AU TO N O M Y As we saw before, the importance of autonomy is obvious when we want to assess the health-based objection. For how much risk of harm to health should we accept that athletes are willing to take? But let’s now consider autonomy in more detail and in its own right in relation to whether PEDs should be banned. There is no doubt that the autonomy or self-determination of people is an important ethical value in guiding our actions whether the use of PEDs should be legal.33 But what do we mean by the term autonomy? In what follows, it is presumed that an agent has made an autonomous choice if we require the agent to have at least: (a) access to information about available options and the expected risks and benefits of these options, and (b) the ability to understand this information, to form preferences about the P e r fo r mance - E nhancin g D r u g s 

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options, and to make a choice based on this information and any relevant related preferences of the agent, and finally (c) the context under which the choice is made must be free of undue influence such as coercion, manipulation, pressure, and social conditioning.34 Nevertheless, it is not obvious what valuing autonomy implies concerning whether the use of PEDs for healthy people should be legal. It can and has been argued that the ban on healthy people’s use of PEDs violates their autonomy.35 This is clearly so if we accept that adults who are rational and well-informed about the effect of a substance or method X, and who voluntarily want to use X, have the right to decide for themselves whether they want to use X. On the other hand, a central argument against lifting the ban on PEDs for healthy people is that such a policy would violate people’s autonomy. This is because lifting the ban would somehow coerce or pressure the relevant people to use PEDs in order to “keep up” with PED-users, thereby violating requirement (c). Therefore, the objection to lifting the ban for healthy individuals is that the decision to use PEDs would not then be taken in an environment that is free from undue influence. In what follows, we shall focus on this latter view by trying to specify in more detail how lifting the ban on the use of PEDs for healthy people can be said to violate people’s autonomy and critically discuss when this is true, and if true, when it constitutes a decisive moral reason to protect the current ban. If lifting the ban implied that athletes or students would be force-fed PEDs, that would clearly violate people’s autonomy and be indisputably morally wrong and the ban should therefore not be lifted. But it is far from obvious that this would be the outcome of lifting the ban. Usually, when athletes or students use PEDs this is not the result of force, and lifting the ban on PEDs is fully compatible with regulations and a culture that protects the autonomy of individuals. However, violating autonomy by means of what we can call brute force is far from the most discussed objection to lifting the ban on PEDs. Different kinds of coercion, for example, through explicit or implicit threats to use PEDs, have taken center stage in the ethical discussion.36 The type of threat made to pressure 344 

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someone to use PEDs is of course highly significant for our moral evaluation of banning performance-enhancing drugs. If, to take an exaggerated case, a teacher threatens a student that her family will be killed if she does not use cognitive enhancement drugs, then obviously it is morally wrong and that would clearly speak against lifting a ban on such drugs. With such a threat, the student is practically left with no choice, as the cost of not using drugs is very high. Instead of talking about force or coercion, it might be more in line with the objections expressed in the literature to say that legalizing PEDs for healthy individuals would result in social pressure to use PEDs—a morally problematic pressure exerted by those around the individual concerned that has negative consequences for the athletes who do not want to use PEDs. Moreover, this social pressure would occur because athletes and students know that all their competitors or classmates are probably using PEDs. However, if we accept that the pressure from other individuals to perform better at competitions in sport or education is an expression of a morally problematic pressure, then it can be argued that this has unacceptable implications.37 According to this mindset, it would, for example, be morally unacceptable for a marathon runner to feel pressured to train twice a day to be able to compete with the other marathon runners. Of course, it might be a problematic psychological pressure for the individual to perform their best and having to train twice a day. But this does not seem like a morally problematic pressure that violates the autonomy of the athlete. We usually consider athletes and students as well informed and competent to make autonomous choices in relation to their lives. This view is supported by the fact that we already accept that, for instance, athletes choose for themselves whether they want to follow a training program, participate in a tournament, take medicine that is not on WADA’s prohibited list, or postpone education, and so on. However, if we trust that athletes and students, in similar situations, are free to choose in those situations, then it seems reasonable to believe that they can decide on an informed basis whether they want to use PEDs.

This way of reasoning matches accepted reasoning in a number of other areas. In the health sector, we also think it acceptable for patients to sometimes refuse treatment even when the physician knows that it might be very harmful to their health to do so. The basis for such acceptance is that we assume that it is a voluntary and well-informed decision made by a rational individual. Moreover, being under moderate pressure or influence to perform your best also has positive consequences. It may help you perform better and learn more than if there were no pressure. We can now conclude that if doping were legalized, it does not necessarily imply that athletes would be coerced into doping; this is an empirical question of whether this will be true or not. However, if athletes are subjected to direct coercion or threats to life if they do not use doping, as has been the case in totalitarian countries, this is obviously immoral and speaks in favor of not lifting the ban. Athletes and students might of course feel the pressure from their competitors to use PEDs if such drugs were legalized, but this is not necessarily a moral problem. Like you, I sometimes feel pressured into doing many things. This could be in connection with certain tasks at work or the fact that I take care to be polite to people. However, it is not convincing to think that I am automatically subject to a morally problematic pressure in those situations and that we need to ban conduct that leads to such situations.

FAI RN E SS That the use or legalization of PEDs would lead to an unfair advantage for those who use it, compared to those who do not use it, is a frequently raised objection.38 This objection can be formulated in several different ways according to how the notion of “unfair advantage” is specified.39 In this rather short entry, we shall focus on two such specifications: cheating and unequal access to PEDs due to differences in financial resources. The first specification is that the use of PEDs constitutes a form of cheating and therefore is unfair. If, for example, some athletes or students use PEDs that

are banned, whereas others do not (e.g., because they are worried about their health or fear punishment), this can create unequal opportunities of winning in sport or of getting good grades at an educational institution. We should be aware that cheating may not always create a competitive advantage, as you might get caught or because a certain drug is used in a way that will only make you perform badly. But if the use of PEDs amounts to cheating and creates unequal and advantageous opportunities, such use is, as a rule of thumb, morally problematic because it violates rules that are the result of a democratic process and apply to all. It could be rules as we see them within the world of sport (e.g., WADA’s prohibited list) or it could be rules for an educational institution, or it may be state rules against the production, distribution, selling, and buying of PEDs to or by healthy people.40 One significant challenge to this kind of objection is that it presupposes that the use of PEDs is wrong. For, if PED-use is not wrong, then we would be free to legalize it, in which case PED-use would then no longer constitute cheating. However, even if the objection based on unfairness in terms of cheating is a non-starter as an argument in favor of a ban, there are other fairness-based objections to lifting the ban on the use of PEDs which must be considered. This leads us to the second specification of unfairness, which is based on the idea or worry that PEDs would not be equally distributed if legalized, and that this is morally objectionable. The moral objection would arise because those who would benefit most from legalization would be the privileged or rich, due to cost barriers which would make it less likely that poorer people could have access to such drugs. This would be an unfair advantage, as it would only increase the inequality between rich and poor when it comes to performance on the labor market or in the realm of sport. Although this objection seems very attractive, it can be challenged. First, we can observe that, in general, few would be willing to restrict advances in health and well-being because such advantages were not distributed equally.41 Therefore, if PEDs, like proper nutrition and diet, could help some individuals but not all (because some could not afford it), few would argue P e r fo r mance - E nhancin g D r u g s 

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that we should not help anyone, as it seems better to help some people than none. This argument may not seem so convincing in the context of sport, with its zero-sum nature, until we realize that being good at sport typically presupposes that you (besides the genetic lottery) have also won in the social lottery, by having, for example, good coaches, facilities, and private sponsors or state support. Again few would ban that people from rich countries or high-middleincome countries should be allowed to participate in sport even though the social lottery is not fair. Second, access to PEDs may in some situations increase equality of opportunities for athletes and students. For most people, at least most athletes and students in richer parts of the world, anyway, many forms of PEDs represent a cheaper way to improve mental capacities that can enhance performance, compared to consulting a psychologist. Finally, the government or sports associations could pay for or sponsor PEDs for poor people.42 In this case, poor people would not have to pay for the enhancement out of their own pocket, and all else being equal, no people would be subject to unfairness due to not having access to PEDs. An obvious challenge to this latter suggestion is that it seems morally better to spend public money on therapy than on enhancement. This can be either because we want to benefit the worse off, or because of the diminishing marginal utility of benefitting people who are better off (healthy people who want enhancement) compared to benefitting people who are worse off (diseased people who want therapy). However, even if we accept this way of reasoning, this does not support a ban on the use of PEDs for healthy people who pay for PEDs out of their own pocket, as we noticed at the previous two responses to the objection.

AUTHE NTICIT Y The last type of objection to the use and/or legalization of PEDs that we shall deal with in this chapter is that such use undermines people’s authenticity. One way to understand this objection is that the performance a person does under the influence of PEDs 346 

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cannot be a product of the person in question but is purely the product of medication. However, in order to have a critical discussion of this type of objection, we need to be clearer about what is meant by the word “authenticity.” To begin with, we can note that there is little consensus on the meaning of the term. And as I cannot do justice to all its different meanings as it is used in the bioethical discussion of PEDs, in what follows I will distinguish between three different meanings that all seem to play a central role in discussions of this subject. According to the first version, you live an authentic life if what you choose to do in life is in accordance with your own stable values.43 We can call this version the autonomy-based version of authenticity. According to this version, if you are well informed and a competent decision-maker and decide by yourself that you want to use PEDs, this is in accordance with living an authentic life. Note that, not only can the use of PEDs be in accordance with living an authentic life, but the use of PEDs can increase your autonomy by making it easier or possible for you do things that you would like to do but cannot do or have severe difficulties in doing without the use of PEDs,44 for example, by improving impulse control.45 On the other hand, if you are being coerced into using PEDs or if you feel under strong social pressure to use such drugs (and you therefore use them), you are not living an authentic life as you do not act in accordance with your own stable values. Instead, others force what you do upon you. However, as we have already dealt with this kind of worry in the section titled “Autonomy,” we will leave this version of authenticity and move on to another use of the term “authenticity” that does not collapse into an objection based on the fear that use and legalization of PEDs will violate autonomy. According to a second understanding of the term “authenticity,” you live an authentic life if you live your life according to who you really are.46 We can call this version the true-self version of authenticity. This version of authenticity has been used to argue that if you use PEDs, and thereby do something or become someone (e.g., getting a new personality) who is different from who you really are, you are living an inauthentic life. But as several bioethicists

have pointed out, this does not sound like a plausible argument. First, this notion of authenticity seems to rest on a problematic notion of a self (the true self) that is given or unchangeable. As many philosophers and psychologists have tried to describe, our personality and, with that, our cognitive and physical abilities change enormously throughout our lives,47 calling into question any idea of a “true” self. Second, it is not necessarily morally wrong to try to do something that is different from who you are or consider yourself to be. If, for example, a drug turns you from an introvert who fears social company into a person who is able to take pleasure in being with other people, and that increases your well-being, it is difficult to understand why, everything else being equal, this would be morally wrong.48 Moreover, just because we become different and may in one sense become a person with a new personality when we read books, visit foreign countries, have a holiday, are in love, have a child, or get married, it does not seem convincing to say that it therefore follows that all these kind of activities are morally wrong. Finally, it is possible to appeal to authenticity to support the use of PEDs. Some have argued, for example, that, it is an essential feature of showing our authenticity (or the true self of humans) to use technology such as PEDs to improve our lives.49 The final version of authenticity that we shall present and briefly discuss is the idea that, when using PEDs, what you accomplish (e.g., getting a good grade in a math test) is less authentic than if you did not use PEDs. In other words, it is the drug that does the work and not the individual. We can call this the achievement-based version of authenticity. One way of seeing this way of being inauthentic as morally problematic is that it may lessen our regard for the achievement of the person who uses PEDs.50 Again, this way of arguing can be challenged. First, to perform well as a student or as an athlete, it is never enough just to use PEDs. In order to perform well at an educational institution, you need knowledge based on studying the subject in question. Additionally, in sport, you need technical and tactical sense and you need to train intensively to perform well. Therefore, the drug does not do all the work. Second,

we do not need to lessen the achievement of the taker of PEDs; we also admire people who use computers, read books, or use glasses to improve their cognitive abilities. Just as we may enjoy the music performed by healthy musicians who use Ritalin to stay focused. In many situations we value the outcome more than the process, and in many situations, such as the one with the musicians, it seems morally unproblematic to do that if it is safe and therefore it should not be illegal. If I want my surgeon to remove my appendix, and if she can do it more safely and better with the use of PEDs, I will not only salute that, but also argue that she ought to use PEDs.

CO N C LU S I O N In this chapter, I have presented and responded to four important objections to the legalization of PEDs based on four important values in the ethical evaluation of the legalization of PEDs. Namely, health, autonomy, fairness, and authenticity. This does not, of course, mean that there are no other interesting arguments for or against legalization in the bioethical literature. In favor of lifting the ban there are also some social benefits that not should be neglected in an overall cost-benefit analysis of whether the bans on PEDs should be lifted. For example, that legalization can reduce the possibility of criminals profiting from producing, distributing, and selling drugs and increase the revenues on a regulated and open market on PEDs. Several studies have shown that organized crime makes billions of euros on the criminal market for drugs, such as anabolic steroids and EPO.51 Against legalization several bioethical scholars have, for example, argued that the legalization of PEDs would lead to an arms race, where all participants would lose in terms of health and consumption of time and money52 or that legalization would lead to societies obsessed with perfection.53 Others have argued that doping is against the Spirit of Sport54 or that the use of cognitive enhancement can be viewed as an individual and morally problematic solution to social problems on the labor market or in education.55 However, the values chosen for this text represent P e r fo r mance - E nhancin g D r u g s 

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and are incorporated in some of the most important and common arguments in the bioethical debate on the subject of performance-enhancing drugs.56 Anyway, a thorough ethical analysis of the use or legalization of PEDs should at least entail ethical concerns for health, autonomy, fairness, and authenticity.

N OTE S 1.  C. M. Tucker, Coffee Culture: Local Experiences, Global Connections (Routledge, 2017). 2.  N. Bostrom and A. Sandberg, “Cognitive Enhancement: Methods, Ethics, Regulatory Challenges,” Science and Engineering Ethics 15, no. 3 (2009): 311–41; A. G. Franke et al., “The Use of Caffeinated Substances by Surgeons for Cognitive Enhancement,” Annals of Surgery 261, no. 6 (2009): 1091–95. 3.  A. Foskett, A. Ali, and N. Gant, “Caffeine Enhances Cognitive Function and Skill Performance during Simulated Soccer Activity,” International Journal of Sport Nutrition and Exercise Metabolism 19, no. 4 (2009): 410–23; A. G. Franke et al., “Methylphenidate, Modafinil, and Caffeine for Cognitive Enhancement in Chess: A Double-Blind, Randomised Controlled Trial,” European Neuropsychopharmacology 27, no. 3 (2017): 248–60. 4.  E. Comasco et al., “Why Do Adolescents Drink? Motivational Patterns Related to Alcohol Consumption and Alcohol-Related Problems,” Substance Use & Misuse 45, no. 10 (2010): 1589–604. 5. Whereas doping is not punished by states like the United Kingdom or Denmark, in states such as Italy, France, Spain, and the United States, it is indeed punishable by law—see, for example, Kayser (2018). 6. A. E. Buchanan, Beyond Humanity? The Ethics of Biomedical Enhancement (Oxford University Press, 2011); M. J. Farah et al., “Neurocognitive Enhancement: What Can We Do and What Should We Do?,” in Neuroethics: An Introduction with Readings, ed. M. J. Farah (MIT Press, 2010), 30–41; K. van de Ven, K. J. Mulrooney, and J. McVeigh, eds. Human Enhancement Drugs (Routledge, 2020). 7. A. Erler, “The Limits of the Treatment-Enhancement Distinction as a Guide to Public Policy,” Bioethics 31, no. 8 (2017): 608–15. 8. For some interesting conceptual work on trying to specify the phrase “performance-enhancing drugs” and challenge the meaning and moral necessity of the distinction between therapy and enhancement, see also Nick Bostrom, and Rebecca Roache, “Ethical Issues in Human Enhancement,” New Waves in Applied Ethics (2008): 120–52, as well as Erler, “The Limits of the Treatment-Enhancement Distinction,” and Alex McKeown, “Enhancement and Therapy: Is it Possible to Draw a Line?” Rethinking Cognitive Enhancement (2017): 193–212. 348 

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9. V. Møller, The Ethics of Doping and Anti-doping: Redeeming the Soul of Sport? (Routledge, 2009); T. S. Petersen, Doping in Sport: A Defence (Routledge, 2021). 10.  R. Meulen, A. Mohamed, and W. Hall, eds., Rethinking Cognitive Enhancement (Oxford University Press, 2017). 11. M. Schermer, “Ethics of Pharmacological Mood Enhancement,” in Handbook of Neuroethics, eds. J. Claus and N. Levy (New York, NY: Springer, 2015), 1177–90. 12. B. D. Earp, “Love and Enhancement Technology,” Oxford Handbook of Philosophy of Love. 13. T. Douglas, “Moral Enhancement,” Journal of Applied Philosophy 25, no. 3 (2008): 228–45; I. Persson and J. Savulescu, Unfit for the Future: The Need for Moral Enhancement (Oxford University Press, 2012). 14.  J. Harris, Enhancing Evolution: The Ethical Case for Making Better People (Princeton, NJ: Princeton University Press, 2010); M. Sandel, The Case against Perfection: Ethics in the Age of Genetic Engineering (Harvard University Press, 2007). 15.  M. Häyry, “Considerable Life Extension and Three Views on the Meaning of Life,” Cambridge Quarterly of Healthcare Ethic 20, no. 1 (2011): 21–29; S. M. Liao, J. Savulescu, and D. Wasserman, “The Ethics of Enhancement,” Journal of Applied Philosophy 25, no. 3 (2008): 159–61. 16. T. S. Petersen, “Sport, Neuro-Doping and Ethics,” Neuroethics 14 (2021): 137–40; H. Zohny, “The Myth of Cognitive Enhancement Drugs,” Neuroethics 8, no. 3 (2021): 257–69. 17.  R. Ulrich et al., “Doping in Two Elite Athletics Competitions Assessed by Randomized-Response Surveys,” Sports Medicine 48, no. 1 (2018): 211–19. 18.  S. E. McCabe et al., “Trends in Medical Use, Diversion, and Nonmedical Use of Prescription Medications among College Students from 2003 to 2013: Connecting the Dots,” Addictive Behaviors 39, no. 7 (2014): 1176–82. 19.  For an overview of prevalence studies, see, for example, J. Tully et al., “Estimated Prevalence, Effects and Potential Risks of Substances Used for Cognitive Enhancement,” in Human Enhancement Drugs, eds. K. van de Ven, K. J. Mulrooney, and J. McVeigh (Routledge, 2019), 112–27. 20.  See, for example, S. M. Liao, J. Savulescu, and D. Wasserman, “The Ethics of Enhancement,” Journal of Applied Philosophy 25, no. 3 (2008): 159–61. 21.  F. Hartgens and H. Kuipers, “Effects of Androgenic-Anabolic Steroids in Athletes,” Sports Medicine 34, no. 8 (2004): 513–54. 22.  M. J. Minzenberg and C. S. Carter “Modafinil: A Review of Neurochemical Actions and Effects on Cognition,” Neuropsychopharmacology 33, no. 7 (2008): 1477–502; C. Sugden et al., Effect of Pharmacological Enhancement on the Cognitive and Clinical Psychomotor Performance of Sleep-Deprived Doctors: A Randomized Controlled Trial, Annals of Surgery 255, no. 2 (2012): 222–27. 23.  A. D. Mohamed, “Does Modafinil Improve Cognitive Functioning in Healthy Individuals?,” in Rethinking Cognitive Enhancement, eds. R. Meulen, A. Mohamed, and W. Hall (Oxford University Press, 2017), 107–24; D. C. Randall, J. M.

Shneerson, and S. E. File, “Cognitive Effects of Modafinil in Student Volunteers May Depend on IQ,” Pharmacology Biochemistry and Behavior 82, no. 1 (2005): 133–39. 24.  H. Zohny, “The Myth of Cognitive Enhancement Drugs,” Neuroethics 8, no. 3 (2015): 257–69. 25. J. van Amsterdam, A. Opperhuizen, and F. Hartgens, “Adverse Health Effects of Anabolic-Androgenic Steroids,” Regulatory Toxicology and Pharmacology 57, no. 1 (2010): 117–23. 26. J. Savulescu, “Healthy Doping: Why We Should Legalize Performance-Enhancing Drugs in Sport,” in Routledge Handbook of Drugs and Sport, eds. V. Møller, I. Waddington, and J. M. Hoberman (Routledge, 2015). 27. V. Møller, The Ethics of Doping and Anti-doping: Redeeming the Soul of Sport? (Routledge, 2009). 28.  C. Lundby and N. V. Olsen, “Effects of Recombinant Human Erythropoietin in Normal Humans,” The Journal of Physiology 589, no. 6 (2011): 1265–71. 29.  L. Degenhardt et al., “Global Burden of Disease Attributable to Illicit Drug Use and Dependence: Findings from the Global Burden of Disease Study 2010,” The Lancet 382, no. 9904 (2013): 1564–74; J. Godfrey, “Safety of Therapeutic Methylphenidate in Adults: A Systematic Review of the Evidence,” Journal of Psychopharmacology 23, no. 2 (2009): 194–205. 30.  M. Johnson, Spitting in the Soup: Inside the Dirty Game of Doping in Sports (VeloPress, 2016); Petersen, Doping in Sport: A Defence. 31.  J. S. Mill, On Liberty and Other Essays (USA: Oxford University Press, 1859, 1998). 32.  For a short overview of this discussion, see, for example, T. Petersen, Doping in Sport: A Defence (Routledge 2021). 33. M. Veber, “The Coercion Argument against Performance-Enhancing Drugs,” Journal of the Philosophy of Sport 41, no. 2 (2014): 267–77; Farah et al., “Neurocognitive Enhancement”; T. S. Petersen, “Should the State Prohibit Healthy People’s Access to Pharmacological Cognitive Enhancers? On Arguments from Coercion and Individualization,” International Journal of Law and Psychiatry 65 (2019): 101382. 34.  T. L. Beauchamp and J. F. Childress, Principles of Biomedical Ethics, 6th ed. (Oxford University Press, 2002). 35. Petersen, Doping in Sport: A Defence, Chapter 4. 36.  H. Greely et al., “Towards Responsible Use of Cognitive-Enhancing Drugs by the Healthy,” Nature 456, no. 7223 (2008): 702–5; S. Morein-Zamir and B. J. Sahakian, “Pharmaceutical Cognitive Enhancement,” in The Oxford Handbook of Neuroethics, eds. J. Illes and B. J. Sahakian (Oxford University Press, 2011), 229–44. 37. Veber, “The Coercion Argument against Performance-Enhancing Drugs”; Petersen, Doping in Sport: A Defence.

38.  Farah et al.,“Neurocognitive Enhancement”; C. Lenk, “Is Enhancement in Sport Really Unfair? Arguments on the Concept of Competition and Equality of Opportunities,” Sports, Ethics and Philosophy 1, no. 2: 218–28; K. Park, “Neuro-Doping: The Rise of Another Loophole to Get Around Anti-doping Policies,” Cogent Social Sciences 3, no. 1: 1360462. 39. T. S. Petersen, and K. Lippert-Rasmussen, “NeuroDoping and Fairness,” Neuroethics 14, no. 2 (2021): 179–90. 40.  W. Hall and J. Strang, “Challenges in Regulating the Use of Stimulant Drugs for Cognitive Enhancement in Normal Individuals,” in Rethinking Cognitive Enhancement, eds. R. Meulen, A. Mohamed, and W. Hall (Oxford University Press, 2017), 292–301. 41.  Farah et al., “Neurocognitive Enhancement.” 42.  J. Savulescu, “Human Enhancement,” in Ethics and the Contemporary World, ed. D. Edmonds (Routledge, 2019), 319–34. 43.  D. DeGrazia, “Prozac, Enhancement, and SelfCreation,” Hastings Center Report 30, no. 2 (2000): 34–40. 44. Buchanan, Beyond Humanity? 45.  Savulescu, “Human Enhancement.” 46.  C. Elliott, “Enhancement Technologies and the Modern Self,” Journal of Medicine and Philosophy 36, no. 4 (2011): 364–74. 47.  D. Parfit, Reasons and Persons (Oxford University Press, 1984). 48. Buchanan, Beyond Humanity?; DeGrazia, “Prozac, Enhancement, and Self-Creation.” 49.  E. Parens, “Authenticity and Ambivalence: Towards Understanding the Enhancement Debate,” Hastings Center Report 35, no. 3 (2005): 34–41. 50. Sandel, The Case against Perfection. 51. T. M. Hunt, Drug Games: The International Olympic Committee and the Politics of Doping, 1960–2008 (University of Texas Press, 2011); L. Paoli and A. Donati, The Sports Doping Market: Understanding Supply and Demand, and the Challenges of Their Control (Springer Science & Business Media, 2013). 52. Bostrom, “Cognitive Enhancement”; E. Chwang, “Why Athletic Doping Should Be Banned,” Journal of Applied Philosophy 29, no. 1 (2012): 33–49. 53. Sandel, The Case against Perfection. 54.  World Anti-Doping Agency, World Anti-Doping Code, 2021, https://www.wada-ama.org/en/resources/worldanti-doping-code, accessed January 20, 2022. 55.  Petersen, “Should the State Prohibit Healthy People’s Access to Pharmacological Cognitive Enhancers?” 56. Farah et al., “Neurocognitive Enhancement” Meulen, Mohamed, and Hall, eds., Rethinking Cognitive Enhancement; van de Ven, Mulrooney, and McVeigh, eds. Human Enhancement Drugs.

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CHAPTER 30

Medicine on Russian-Language Social Media1 Yulia Karpova and Pavel Vasilyev

O

nline discussions of illness and body issues emerged with the beginning of the Internet. They have since been studied by researchers in media studies, sociology, anthropology, and other disciplines. Patient forums and blogs, narrations of physical and mental illness on Instagram and YouTube have received considerable scholarly attention.2 However, there is still little research on the dynamically growing phenomenon of blogs and Instagram pages by medical professionals. This phenomenon is noticeable in the English-language section of Instagram: for example, quite a few NHS physicians are popular Instagrammers, such as GPs Zoe Williams and Alex George, who are also TV-personalities. Likewise, some U.S. medical professionals run Instagram pages and podcasts: one famous example is the OBGYN Jen Gunter, lately a fierce debunker of myths about Covid-19 vaccines. Yet Russia and other countries with a considerable Russian-speaking population, Ukraine and Belarus, occupy an especially prominent place in this trend. This has to do with the suboptimal quality of services in many state clinics, which brings popularity to the private medical sector. As a result, Instagramming becomes an important means for promoting private clinics and the professional excellence of their employers. This chapter focuses on the case of Russian language as formerly prominent in global Instagramming about evidence-based medicine (EBM). 350

We suggest that before February 2022 Russophone Instagrammers represented the growing trend in medical communication. Since the mid-2010s, Russian-speaking physicians from Ukraine, Belarus, and Russia started launching educational pages, predominantly on Instagram, with the twin aim of educating the public and discussing new research and clinical guidelines with their colleagues. These pioneers were the employees of private clinics that promoted EBM (translated into Russian as dokazatel’naia meditsina, literally “proof-based medicine”) as opposed to clinical practice based on the authority of Head Physicians. In addition, dokazatel’naia meditsina emerged as an antidote to a range of alternative medical practices—from “folk” treatments going back to the preindustrial past or invented in the twentieth century, to cleansing marathons and fad diets promoted by fitness gurus. Medical Instagrammers often unite these diverse practices in the Russian term mrakobesie (“obscurantism”). The characteristics klinika dokazatel’noi meditsiny (“evidence-based medicine clinic”) and dokazatel’nyi vrach (“evidence-based physician”) became central in medical social media, especially Instagram. “Evidence-based” private clinics chose Instagram as the main platform to present their progressive approach to health care, and the administration encouraged the employees to launch personal pages in addition to the clinics’ corporate pages. Doctor’s individual pages appeared as advancing the

public image of their employers. Then some doctors from the public health care sector followed suit. Being an Instagrammer became an almost necessary attribute of a progressive and successful doctor, familiar with the principles of EBM. Both corporate and personal pages began with active, even sometimes aggressive promotion of the hierarchy of medical evidence. In some cases, these Instagrammers did not hesitate to criticize other clinics and practitioners, even indicating their names.3 Over the past two years, however, this rigidity has been questioned. Later medical Instagrammers started looking for a more flexible approach to health care that takes clinical guides critically and gives space to certain treatments and supplements unsupported by solid evidence, if they have not been proven to cause any harm. This article aims to observe the phenomenon of accommodating Instagram, the platform focused on visuality, for the purpose of patient education and professional medical discussion. To our knowledge, it is the first study of Instagramming about medicine by Russophone medical professionals. There are few articles about how Russian Instagrammers create narratives of pregnancy and aging under the influence of social norms about femininity and beauty.4 Yet a doctor as an Instagrammer has not attracted scholarly attention yet. Not attempting to embrace the entire diversity of Russophone medical Instagram pages, we will focus on the topic of menstruation and menstrual health. This topic is politically charged not only in the countries with significant Russian-speaking population, but globally. Menstruation relates to such controversial issues as gender bias in medicine and society, body image and diet culture. The Instagramming of menstrual health by doctors highlights the many conflicts that threaten the triumphalist narrative of EBM. Even though the topic of menstruation is still a taboo in many contexts, it has become increasingly visible in mass media recently, including social media. As Chris Bobbel notices, within past half decade we have recently seen a proliferation of “‘menstrual-positive expressions—from the artistic to the practical, the serious and the playful, the local and the global.” Western social media has played a tremendous role in de-stigmatizing and politically instrumentalizing

menstruation. Russophone social media (produced in Ukraine, Belarus, Russia, and beyond) have echoed the trend, in spite of a large backlash of anti-feminist and conservative public. However, public discussion of menstruation in Russian began long before the invention of the World Wide Web. The first part of the article provides the historical background for discussing menstruation in the public media in Russia and the Soviet Union, and the second part focuses on menstruation-related medical content on Instagram. This study is based on visual and verbal analysis of selected Instagram posts, stories, and reels. The sample of posts is determined by the relevance of content. We chose the posts using relevant hashtags in Russian that refer to menstrual disorders (#аменорея, #гипоталамическаяаменорея, and #фга) and simple observation of popular medical pages, because many of them do not use hashtags. Rather than collecting and analyzing all the existing posts on this topic, we aimed at highlighting the general trend and visual means of Instagramming menstrual health.5

M E DI C A L E V I DE N C E I N RU S S I A: FR O M S OV I E T P E R I O DI C A L S TO I N S TAG R AM Popular public health advice publications for women and adolescent girls emerge as an important source on the history of menstruation in many national contexts, including Russia.6 While clearly prescriptive and in many cases outright problematic in their medicalizing attitude,7 they nevertheless give us an understanding of how the dominant perceptions of menstrual cycle and menstrual hygiene have evolved throughout the centuries. In the early Soviet context, there was a massive educational attempt at teaching men and women about various public health topics and the importance of hygiene and physical exercise as well as the more specific issues pertaining to women’s health.8 However, as the cultural climate in the Soviet Union turned increasingly conservative under Stalin’s rule, most of the health education campaigns were rolled back and replaced with rather harsh reproductive policies. These policies primarily M E D I C I N E O N RU S S I A N - L A N GU A G E S O C I A L M E D I A  

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used strict moral didacticism to enforce a pro-natalist agenda for the benefit of the socialist state.9 While advice publications re-appeared following gradual liberalization in the wake of Stalin’s death (in the so-called Thaw period), they never quite achieved the prominence and the open discussion climate that they enjoyed in the 1920s.10 In this section, we will focus on the late Soviet and post-Soviet periods and examine the evolution of public health advice about menstruation from the 1960s to the 2000s. In doing so, we will show how these publications increasingly constructed an image of a “modern” and “independent” woman for whom the period was not a reason to change her favored lifestyle.11 Late Soviet advice books about menstruation primarily employ a very cold and medicalized way of narration, as if to caution their readers against undue familiarity and to emphasize the idea that menstruation was a “serious” subject. Seeing menstruation as a “complex biological process that involves the whole [human] organism,” they warned against “excessive mental and physical strain” and unwarranted emotionality.12 Cycling, physical exercise, and even dancing during one’s period were all explicitly prohibited. Sex during menstruation was not allowed “under any circumstances.”13 Soviet medical professionals put special emphasis on the importance of daily personal hygiene and the appropriate use of “menstrual bandages” that were to be self-made out of rags and chunks of cotton. However, in contrast to the lengthy descriptions of the biology of menstrual cycle in humans and the irregularities of menstrual cycle as medical conditions,14 this practical advice was usually very vague and brief. Late Soviet publications avoided speaking to their readers about the sensitive topic of menstruation and preferred to hide behind the bulky and voluminous medical-scientific language. One is tempted to presume that medics wrote these books and articles to fulfill the formal requirements of the Ministry of Health rather than to educate average women.15 In the second half of the 1980s, after decades of strict party censorship of all materials, publishing rules were finally relaxed in the spirit of perestroika (political and economic reconstruction) and glasnost 352 

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(openness) and the Soviet book market was flooded by an unprecedented amount of new publications on almost every subject imaginable. It is interesting to note that a similar explosion in menstrual literature also happened in the West. These were both new books and those that could not be published in the earlier conservative cultural climate, as well as translations of foreign editions. Understandably, some of the most popular topics were of the “sexier” nature including explorations of crime and criminality, psychology and mental health issues—as well as sex education and advice. Along with the new editions of Cesare Lombroso, Sigmund Freud, and Kamasutra, many health education books focused on the topic of women’s health and sexuality. Seeking to win the confidence of the purportedly “modern” and “liberal” female reader, these publications employed a much more conversational tone and attempted to pose as a “friend” rather than a medical doctor. Around 1990, menstruation continued to place certain limitations on the perceived ability of women to engage in physical exercise (especially cycling and weightlifting), and swimming in open waters during one’s period was explicitly prohibited.16 However, in the new political and cultural climate, the importance of carrying on with “one’s regular lifestyle” was also highlighted numerous times.17 Similar to their Western counterparts, Russian-speaking authors stressed that menstruation was not an ailment, but just a minor inconvenience that one can successfully manage with the help of modern menstrual hygiene products. By the early 2000s, hardly any limitations remained on what a menstruating woman could do. Glossy translations of popular Western publications such as Gaby Schuster’s Mädchen—1000 Fragen, alle Antworten or Lynda Madaras’ What’s Happening with My Body? Book for Girls18 seemed to provide all the necessary justifications. From now on, women should not even ask themselves whether they could go to the beach, ride a bicycle or have sex during their periods. In the words of the contemporary women’s health guru, “the answer to all of these questions” was “yes.”19 Curiously enough, post-Soviet women were now even allowed to enter Russian Orthodox churches while menstruating. As Orthodox priest and best-selling

author Andrei Kuraev explained in his 2004 book, Zhenshchina v tserkvi [The Woman in a Church], the contemporary “hygienic revolution” made it possible to “effectively prevent the episodic bleeding from making the church impure as well as to neutralize the smell that comes from the bleeding.”20 Because the Russian political regime under Vladimir Putin’s presidency had increasingly relied on the Russian Orthodox Church and cultural conservatism to attract popular support21 (while continuing to carry out overwhelmingly neoliberal economic policies), it is perhaps not surprising that women were now welcome to enter the most sacred spaces during menstruation. Late Soviet and post-Soviet public health advice about menstruation increasingly attributed greater agency to the figure of a menstruating woman and ultimately “allowed” her to work, study, socialize and engage in sports while having her period. Significantly, to an extent, this evolution mirrored the developments in the United States as described by Lara Freidenfelds in her book. As the Russian economy abandoned its socialist basis and took a radical U-turn toward free-market capitalism in the 1990s and early 2000s, more and more women needed to respond to the demands of the new socio-economic structure. Since then, the capitalist system in Russia and many other post-Soviet states has been requiring independent, mobile and productive female professionals regardless of the “time of the month.” At the same time, the contemporary capitalist vision of a successful woman also dictates particular appearances: youthful, thin and fit. This set of demands tends to provoke a lot of stress and anxiety that, in turn, allow increasing precedents of eating disorders and menstrual disturbances.

IN SE ARCH O F T H E LO ST P E R I O D As Russophone medics started gaining popularity on Instagram around 2015, menstruation appeared as one of the most discussed topics. Gynecologists and other specialists have been not only explaining the physiology of menstrual cycle and the basics of menstrual hygiene, but also different types of amenorrhea,

anovulation, and different causes of excessive or painful bleeding. One menstruation-related disorder that is becoming increasingly visible on these pages is functional hypothalamic amenorrhea (FHA), that is, absence of menstrual cycles due to low energy availability (consuming fewer calories than spending) and excessive mental stress. FHA is a term professionally instituted in 2017 by The Endocrine Society,22 as more precise than the currently used terms such as “exercise-induced amenorrhea”23 or “female athlete triad”24 (that includes decreased energy availability, menstrual dysfunction, and low bone density). FHA refers not only professional athletes, but also recreational athletes and regular gym-goers, as well as women (and transgender men and non-binary people with ovaries and uterus) who lose their period mainly due to restrictive eating and/or mental stress. We use FHA as a convenient vantage point of observing how the Russophone Instagram recognizes the interdisciplinary character of menstruation: how it relates to body image, everyday behavior and long-term health. It mainly appears on pages by medical experts and extremely rare in personal accounts about recovery from restrictive eating disorders. This is in a contrast to Anglophone social media, where postings on personal FHA recovery journeys have recently proliferated.25 Seemingly simple by its etiology and too obvious to discuss, FHA is still largely under-researched and little understood. While it is not genetically determined and in many cases reversible, its treatment can be long and complicated, involving a team of specialists rather than solely a gynecologist. Posts about FHA in medical Instagram accounts present a special case of medicalization of menstruation, whereas the latter is viewed not as an essential component of normative femininity that needs to be disciplined, but as a barometer of overall health. This vision, we argue, is not necessarily constraining, because it can play a positive role in reviewing diet culture and reclaiming the bodies of menstruating people. Dieting, overtraining and stress rather frequently appear in gynecologists’ posts about the possible causes of amenorrhea oligomenorrhea (irregular menstrual cycles).26 Until 2020, comprehensive posts specifically on FHA were presented by only three M E D I C I N E O N RU S S I A N - L A N GU A G E S O C I A L M E D I A  

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medical Instagrammers. Presumably, Moscow endocrinologist Daria Iakovleva was the first to post about FHA in October 2017, introducing the Russian translation of this term (funktsional’naia gipotalamicheskaia amenoreia).27 Her post starts by stressing the “interdisciplinary” and “functional” character of FHA: this disorder lies at the intersection of gynecology, endocrinology, dietetics, psychiatry, and sports medicine; it has no identifiable organic causes, and, in most cases, it is reversible through lifestyle interventions. Further, Dr. Iakovleva explained the pathogenesis of FHA: under-eating and/or over-exercising and/ or mental stress affect neural mediation in the central nervous system and thus lower the secretion of gonadotropin-releasing hormone (GnRH) in the hypothalamus. This lowering, in turn, prompts the decrease of frequency or amplitude of the release of gonadotropin hormones in the pituitary (the gonadotropins are follicle-stimulating hormone, FSH, that initiates follicular growth, and luteinizing hormone, LH, that plays a crucial role in ovulation and that decreases more dramatically in FHA). As a result, ovulatory cycles become impossible, menstruation ceases, and the ovaries release too little estradiol—a hormone essential to maintaining many bodily function, especially bone turnover. After this initial post, (1) Dr. Iakovleva went on with more posts on FHA, (2) on the complex task of diagnosing FHA after excluding all possible organic causes of amenorrhea, (3) on treatment through lifestyle intervention where psychological/psychiatric and dietetical intervention are necessary, and (4) on administering hormonereplacement therapy (HRT) in severe cases.28 These four parts were interchanged with posts on the related topics: endocrine functions of fat tissue, the role of hormone leptin, and definitions of anorexia and orthorexia (the obsession with “clean eating,” still not recognized as eating disorder in DSM).29 A year later, in November–December 2018, Inna Pupkevich, a gynecologist from Minsk, Belarus, published three posts on FHA. She chose the narrative structure similar to Iakovleva’s: (1) pathophysiology, (2) diagnostics, and (3) treatment.30 Both medics’ series appealed mainly to colleagues, but thanks to brevity and clarity, potential patients can understand 354 

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these posts, too. However, the two post series are visually quite distinct: Dr. Iakovleva’s cover photos show blurred bare women’s abdomens overlaid with the inscription “SOS” or the picture of a scale, signifying restrictive eating or poor body image. Dr. Pupkevich, in contrast, displayed an unrelated stock picture of blossoming cherry branch set against a wooden wall. If the former visual choice refers to danger and fear, the former offers an image of flourishing that could be read as a promise to those who recover from FHA. Another difference between the two doctors’ posts is that Pupkevich used several images in addition to the cover image, where she included the textual information not fitting to the caption. This approach is very common in medical Instagram, both Anglophone and Russophone: long educational texts exceed the caption and continue in photos. “Swipe across for more info” is a very common ending in a medical Instagram post’s caption. In the Russian version, it looks like “swipe the carousel” (listaite karusel’). Delegating part of the texts to the multiple images, that is, creating textual slides to continue the caption, is medical Instagrammers’ technique to accommodate Instagram for their purposes. The third doctor who has been addressing FHA on Instagram, Moscow gynecologist Dmitrii Gusev, is an employee of Fomin Clinic—a leading Russian clinic of reproductive health with branches in several cities.31 He is recognized as such by fellow medics on Instagram, who sometimes redirect followers’ questions on FHA to him in their Q&A sessions in Instagram stories.32 In 2017, Dr. Gusev conducted a cohort study of FHA patients and presented the results in his MD dissertation.33 Dr. Gusev’s posts about FHA, that begin in June 2018,34 cover a long range of conceptual questions beyond the basics—from the special role of leptin level as an indicator of energy availability to the psychological aspects of FHA and the role of EDs and other mental disorders in the development and course of this disease. He also actively uses “carousel” in his posts. Dr. Gusev’s stylistic choices for post on FHA have evolved since the first post in June 2018. His early cover pictures usually show the words “Funktsional’naia gipotalamicheskaia amenorrhea” and his

handle doctor.dgusev against a seascape.35 His later posts, however, open with what looks like PowerPoint slides, showing a two-level rubricating. A specific topic (e.g., “Dangerous fitness”) is indicated on a white background, while a series title (“gynecological endocrinology,” “hormones,” “history of medicine,” etc.) is placed on a blue footer field, alongside a logo depicting a uterus with tubes and ovaries, the structure of a particular hormone, or a medical book. The Instagram handle is added under the logo.36 Actively using post images and stories for showing additional text, graphs, tables, and videos, Dr. Gusev targets both his colleagues and his current and prospective patients. The comment sections of his posts demonstrate the diversity of his audience: while fellow doctors share professional concerns (nuances of diagnostics, cooperation with ED treatment experts, sports dietitians, and other medics), the patients ask questions that their doctors had not answered or share their frustration, failure to recover, confusion, and so on. In addition, Dr. Gusev frequently talks about FHA in his Instagram live videos. In all these forms of information sharing, Dr. Gusev encourages questioning and debating from both patients and fellow physicians. Therefore, his page facilitates not only professional exchange but also and doctor–patient interaction, thus sharing some characteristics with online health forums or Facebook groups. As Brady et al. explain referring to previous studies, “online forums may offer a particular role for individuals with ‘contested’ chronic illnesses due to the lack of agreement surrounding the nature and treatment of the condition.”37 While FHA is not a chronic illness (even though it can last for years), there is a clear lack of agreement on its main risk factors, the exact mechanism and key factors of recovery, the relationship between FHA and mental disorders, the non-typical cases of FHA (e.g., FHA as primary amenorrhea and/or normogonadotropic amenorrhea)38 and many other questions. Therefore, we suggest that the possibility of asking questions and receiving at least partial answers under medics’ posts can be as valuable to FHA patients as forums and Facebook groups. More recently, posts on FHA became more visible on Instagram thanks to the posts by gynecologists,

endocrinologists, psychiatrists, and psychologists specializing on eating behavior. The latter is a new breed of experts in Russophone expert communities, who recognize amenorrhea as one of the “red flags” for suspecting an ED. These posts use diverse rhetorical strategies (metaphors, rhetorical questions, and exclamations in combination with bullet-point factual material) and engage several images, mostly occupied by text.39 They very often address specifically patients, warning them to beware diet culture and media- and market-imposed beauty standards. Remarkably, this message is shared both by the ED experts sympathetic to the “health at every size” (HAES) approach40 and the medics who campaign against the “obesity epidemic.” FHA therefore becomes a platform revealing tensions and contradictions in contemporary understanding of health and well-being by the medical community. In this respect, Russophone Instagram reflects the situation of their Anglophone counterparts, though with less leaning toward radical body-positivity or HAES approach. Remarkably, in the fall of 2021, new Russian-language posts on FHA and relative energy deficiency in sport (RED-S) keep appearing on the Instagram pages by gynecologists and psychologists.41 Presumably, their number will be greater by the time this article is published. The second category of pages addressing FHA is much smaller. It consists of “experiential information online”42—patient accounts documenting ED recovery that mention amenorrhea experience to greater or lesser extent. In this category, only one account focused precisely on FHA recovery. It was active over the summer 2021 but disappeared after in the fall of 2021, understandingly, given the emotionally challenging character of the ED recovery.43 This Instagrammer described her uneasy journey with references to Dr. Gusev’s posts and webinars and to American computational biologist Dr. Nicola Rinaldi, an author of a popular HA patient guide, “No Period. Now What?” (not yet available in Russian). The other few accounts chronicle the recovery from an eating disorder or reflect on the accomplished recovery. In the latter case, Instagrammers often share general recovery guidelines, referring to popular nutrition advice such books as the bestseller Intuitive Eating: A M E D I C I N E O N RU S S I A N - L A N GU A G E S O C I A L M E D I A  

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Revolutionary Program that Works by American registered dietitians Evelyn Tribole and Elyse Resch,44 or Nutrition Counseling in the Treatment of Eating Disorders by another American RD, Marcia Herrin.45 Personal accounts on FHA and ED recovery are comparable to patient support groups. However, if the latter’s ethos can be characterized as “I can’t tell you what to do but this is the decision I made and why,”46 the Instagrammers do tell the followers what to do: seek for an ED treatment/get rid of food rules, reconsider their dependence on exercise, consume enough calories per day, and manage stress and anxiety. Still, like the researchers of patient support groups, we distinguish trust as a key concept for understanding Instagram ED/FHA recovery accounts. While medical Instagrammers gain trust of their followers due to their status as professionals and often as employees of prestigious clinics, authors of personal accounts develop trust through highlighting the landmarks of their recovery, including emotional and physical challenges. Posts on ED and FHA recovery sometimes use emotional language and metaphors such as “How did it happen that the diets stole my soul?” Sill­ence et al. argue that “markers of trust online appear to be situated within individuals’ everyday lives, and as a result, forum users’ assessments of information sources online are contingent and embedded.”47 Similarly, Instagrammers make their personal struggles and successes relatable to readers dealing with FHA, and thus become trustworthy along with the experts to whom they refer. Some of these Instagrammers launch their career as “recovery coaches” complementing medical advice, or proceed to getting education as psychologists or personal trainers in order to help other people normalize their body image and relationship with food and exercise.48 While Anglophone FHA recovery accounts not infrequently turn into pregnancy and motherhood pages—when a recovered FHAer successfully gets pregnant and gives birth—we have not seen such examples on the Russianlanguage Instagram.49 It is important to emphasize that in FHA recovery, lifestyle modification and psychological well-being plays a much more decisive role than in organic chronic diseases. Unlike cancer and other 356 

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life-changing chronic diseases, FHA in itself is not life threatening, but it can often be a symptom of part of a restrictive eating disorder such as anorexia nervosa, which can have dire consequences.50 Since only a few examples of ED/FHA patients’ Instagram pages exist in Russian, it is difficult to find out general patterns. A few available examples suggest that in order to run a sustainable, long-lasting Instagram account, one should be recovered from FHA and in remission from an ED.51 We suppose that the recovered Instagrammers are more likely to emphasize personal responsibility for successful recovery than those who narrate the stories of an organic illness that requires medication and/or surgical intervention.52 Therefore, the former are more likely to turn their recovery experience into a coaching career or to seek further education in the areas directly related to EDs, FHA and relative energy deficiency: nutrition, psychology, or personal training.

CO N C LU S I O N This chapter has outlined the main features of Instagramming menstrual health in the increasingly popular sphere of medical Instagram. Continuing the long tradition of popular public health advice, Russian-speaking doctors combine visual images and texts to reach a maximally broad audience. Like their colleagues in English-speaking countries, they adopt the interface of Instagram, the medium heavily reliant on captivating images, to their purpose to educate, instruct, and reinforce professional discussions. This medical intervention in Instagram offers the flexible way to speak about topics that have not been actively discussed in public, such as menstruation and amenorrhea, eating disorders and body image. The diversity of images illustrating menstrual health, the possibility to leave comments and ask questions in stories and direct messages opens the possibility of a dialogue: not between a doctor and a patient, but between a medical expert and diverse public that includes potential patients. This dynamic challenges the notion of the medicalization of menstruation and suggests the term “Instagrammization of medicine.”

Definitely, these Instagram pages work in the capitalist logic of empowering professional success of women (and people of different gender identities) while also dictating perfect looks and provoking body/looks/performance anxiety. Russian-speaking doctors often launch Instagram pages for enhancing the image of the clinics they are employed at, and sometimes, probably, under peer pressure. However, the resulting content in posts, stories and live videos gives space not only for questions, but also for criticisms, both from general Instagram users and from other medical professionals. FHA is an especially interesting case: when discussed by doctors and patients, it highlights people’s insecurities about body image and their frustrations with social expectations. Therefore, we suggest that Instagramming menstrual health is not just a part of marketing evidence-based medicine, but also a forum for professional discussions and horizontal dialogues between doctors and patients, where the former can became interested in patient activism, feminism, and critiques of gender binaries. Moreover, we suppose that through communicating with a wide audience on a popular social medium, Russian-speaking doctors more readily embrace feminist and other critical views on health care practices than they would confined to their clinical settings and professional networks. Instagramming, therefore, became crucial in raising social awareness in Ukrainian, Russian and Belarusian medicine and thus bringing it closer to the global discussion of the social and political crises of health care. However, after February 24, 2022, the linguistic unity of Ukrainian, Belarusian and Russian medical Instagrammers started, understandingly, disintegrating, and especially Ukrainian doctors increasingly reject Russian language for their blogs. This tendency towards linguistic “decolonization” and new developments in medical Instagramming in extraordinary time deserve a separate study.

N OTE S 1.  This chapter was submitted on February 23, 2022. Since then, the circumstances for Instagramming in Ukraine and Russia dramatically changed. Further changes will require

a separate study. A significant change is the banning of Meta in Russia in March 2022. Russia’s residents can still use Instagram and Facebook, but they are prohibited from mentioning these names publicly. 2.  Elizabeth Sillence and Phoenix K. H. Mo, “Communicating Health Decisions: An Analysis of Messages Posted to Online Prostate Cancer Forums,” Health Expectations: An International Journal of Public Participation in Health Care and Health Policy 17, no. 2 (April 2014): 244–53; Anna Sendra and J. Farré, “Communicating the Experience of Chronic Pain through Social Media: Patients’ Narrative Practices on Instagram,” Journal of Communication in Healthcare 13, no. 1 (January 2, 2020): 46–54; Julia Stüwe and Juliane Wegner, “Young Cancer on Instagram: A Paradox of Self-Chosen Exclusion,” M/C Journal 23, no. 6 (December 2, 2020) ; Lauren Reichart Smith and Jimmy Sanderson, “I’m Going to Instagram It! An Analysis of Athlete Self-Presentation on Instagram,” Journal of Broadcasting & Electronic Media 59, no. 2 (April 3, 2015): 342–58; Linda Rozmovits and Sue Ziebland, “What Do Patients with Prostate or Breast Cancer Want from an Internet Site? A Qualitative Study of Information Needs,” Patient Education and Counseling 53, no. 1 (April 1, 2004): 57–64; Irene Groenevelt, “‘It’s Not All Nice and Fun’: Narrating Contested Illness on YouTube and Instagram,” Health (May 2021); Ane Kathrine Gammelby, “Why People Sometimes Consult Facebook Rather than Their Doctors: Devils in the Detail, Methods to the Madness” (PhD diss., Aarhus University, 2020); R. Keyte et al., “Self-Compassion and Instagram Use Is Explained by the Relation to Anxiety, Depression, and Stress,” Journal of Technology in Behavioral Science 6 (2021): 436–41; Debbie Ging and Sarah Garvey, “‘Written in These Scars Are the Stories I Can’t Explain’: A Content Analysis of Pro-ana and Thinspiration Image Sharing on Instagram,” New Media & Society 20, no. 3 (March 2018): 1181–200. 3.  The hierarchy of evidence is a core principle of evidence-based practice. It ranks study types based on the rigor (strength and precision) of their research methods. The hierarchy is often presented as the pyramid, on the basis of which is background information and expert opinion, and on the summit—systematic review. See Murar M. Hassan, “New Evidence Pyramid,” BMJ Evidence-Based Medicine, no. 21 (2016): 125–27. 4.  Katrin Tiidenberg, “Odes to Heteronormativity: Presentations of Femininity in Russian-Speaking Pregnant Women’s Instagram Accounts,” International Journal of Communication no. 9 (May 15, 2015): 13; Katrin Tiidenberg and Nancy K. Baym, “Learn It, Buy It, Work It: Intensive Pregnancy on Instagram,” Social Media + Society (January 2017); Katrin Tiidenberg, “Visibly Ageing Femininities: Women’s Visual Discourses of Being Over-40 and Over-50 on Instagram,” Feminist Media Studies 18, no. 1 (2018): 61–76. 5. Since medical Instagram pages are designed to be widely promoted as tools for professional advancement, we do not see the need to anonymize them. However, for M E D I C I N E O N RU S S I A N - L A N GU A G E S O C I A L M E D I A  

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contextualizing our material, we will sometimes refer to patient Instagram pages. 6.  Lara Freidenfelds, The Modern Period: Menstruation in Twentieth-Century America (Baltimore: The Johns Hopkins University Press, 2009), 38–73; Shing-ting Lin, “‘Scientific’ Menstruation: The Popularisation and Commodification of Female Hygiene in Republican China, 1910s–1930s,” Gender & History 25, no. 2 (2013): 294–316; Carla Pascoe, “The Bleeding Obvious: Menstrual Ideologies and Technologies in Australia, 1940–1970,” Lilith 20 (2014): 76–92. 7. For an illuminating exploration of the problematic nexus between “prescription” and “practice” in the history of medicine, see Maree Bowe, “Women, Subjects of Science and Their Subjective Experience: The Knowledge Evolution 1880s–1930s,” Victorian Historical Journal 59, no. 2 (1988): 36–46. On menstruation specifically, see Julie-Marie Strange, “Menstrual Fictions: Languages of Medicine and Menstruation, c. 1850–1930,” Women’s History Review 9, no. 3 (2000): 606–28. 8.  Frances L. Bernstein, The Dictatorship of Sex: Lifestyle Advice for the Soviet Masses (DeKalb: Northern Illinois University Press, 2007); Tricia Starks, The Body Soviet: Propaganda, Hygiene, and the Revolutionary State (Madison: University of Wisconsin Press, 2009); Susan Grant, Physical Culture and Sport in Soviet Society (London: Routledge, 2014). 9. Chris Burton, “Minzdrav, Soviet Doctors and the Policing of Reproduction during Late Stalinism, 1943–53,” Russian History (Summer 2000): 197–221; Mie Nakachi, Replacing the Dead: The Politics of Reproduction in the Postwar Soviet Union (Oxford: Oxford University Press, 2021). 10.  Elena Dogadina, “Seks est’: Kak pressa razgovarivala o nem s podrostkami v SSSR,” [There is Sex: How the Press Discussed It with Teenagers in the USSR] Wonderzine, October 11, 2017, http://www.wonderzine.com/wonderzine /life/sex/230026-teen-sex-in-ussr. 11.  This focus on modernity has been noted by researchers in other national contexts. See Freidenfelds, The Modern Period: Menstruation in Twentieth-Century America; Roseann M. Mandziuk, “‘Ending Women’s Greatest Hygienic Mistake’: Modernity and the Mortification of Menstruation in Kotex Advertising, 1921–1926,” Women’s Studies Quarterly 38, nos. 3/4 (2010): 42–62; Eugenia Tarzibachi, “The Modern Way to Menstruate in Latin America: Consolidation and Fractures in the Twenty-First Century,” in The Palgrave Handbook of Critical Menstrual Studies, eds. Chris Bobel et al. (Singapore: Palgrave Macmillan, 2020), 813–31. 12.  Ol’ga V. Makeeva, ed., Zdorov’e zhenshchiny [“Women’s Health”], 2nd ed. (Moscow: Meditsina, 1964), 36. 13. Makeeva, Zdorov’e zhenshchiny, 36. 14. Makeeva, Zdorov’e zhenshchiny, 31–36; Aleksandr Pap, Boris Shkol’nik and Iakov Sol’skii, Gigiena zhenshchiny [“Female Hygiene”] (Kyiv: Zdorov’ia, 1964), 143–51. Our thanks go to Professor Melanie Ilic (University of Gloucestershire) for providing a scanned copy of this passage.

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15.  On late Soviet “double-speak” and the importance of “passing,” see the following seminal book: Alexei Yurchak, Everything Was Forever Until It Was No More: The Last Soviet Generation (Princeton, NJ: Princeton University Press, 2006). It should be noted, however, that Yurchak is not particularly gender-sensitive in his work. 16. Tamara I. Makhalova, ed., Dlia vas, devochki! [“For You, Girls!”] (Novosibirsk: Detskaia literatura, 1993), 210. See also Elena Bogdanova and Ol’ga Tkach, “Kriticheskie zametki o ‘kriticheskikh dniakh’: popytka analiza sovremennogo rossiiskogo diskursa” [“Critical Notes about ‘Critical Days’: An Attempt at Analyzing Contemporary Russian Discourse”] in Bespredel’naia sotsiologiia: Sbornik esse k 60-letiiu Viktora Voronkova. TsNSI: Unplugged [“Sociology without Limits: A Collection of Essays on the Occasion of Viktor Voronkov’s 60th Birthday. TsNSI: Unplugged], eds. Oleg Pachenkov, Mikhail Sokolov, and Elena Chikadze (St. Petersburg: TsNSI, 2005), 109. 17. Makhalova, Dlia vas, devochki!, 210. 18.  Gabi Shuster [Gaby Schuster], 1000 voprosov, kotorye obychno zadaiut devochki [“1000 Questions that Girls Usually Ask], trans. E. Bashun (Moscow: Apostol: AST, 2003); Linda Madaras and Eria Madaras [Lynda Madaras and Area Madaras], Chto proiskhodit s moim telom? Kniga dlia devochek [“What’s Happening with My Body? Book for Girls”], trans. O. Maksimenko (Moscow: AST: Astrel, 2005). 19.  Madaras and Madaras, Chto proiskhodit s moim telom? Kniga dlia devochek, 202. 20.  Andrei Kuraev, Zhenshchina v tserkvi [“The Woman in a Church”] (Moscow: Eksmo, 2004), 63–64. See also Bogdanova and Tkach, 103–4. 21. On Vladimir Putin’s presidency from a gender viewpoint, see Valerie Sperling, “Putin’s Macho Personality Cult,” Communist and Post-Communist Studies 49, no. 1 (2016): 13–23; and Elizabeth A. Wood, “Hypermasculinity as a Scenario of Power: Vladimir Putin’s Iconic Rule, 1999–2008,” International Feminist Journal of Politics 18, no. 3 (2016): 329–50. 22.  Catherine M. Gordon et al., “Functional Hypothalamic Amenorrhea: An Endocrine Society Clinical Practice Guideline,” The Journal of Clinical Endocrinology and Metabolism 102, no. 5 (May 1, 2017): 1413–39, https://doi .org/10.1210/jc.2017-00131. 23.  B. R. Olson, “Exercise-Induced Amenorrhea,” American Family Physician 39, no. 2 (February 1989): 213–21. 24.  Taraneh Gharib Nazem and Kathryn E. Ackerman, “The Female Athlete Triad,” Sports Health 4, no. 4 (July 2012): 302–11. 25. These accounts receive mixed attitudes from the medical community as potentially helpful, but in some cases as distorting medical information, generalizing personal experience, and even triggering those still recovering from eating disorders, whose progress is slower and looks different.

26.  For example, Olga Belokon (@doctor_belokon), “Доктор, скажите, пожалуйста, что попить, чтоб была овуляция? И почему у меня ее нет?” Instagram photo, September 30, 2017, https://www.instagram.com/p /BZrAY0jHdk6/; Oksana Bogdashevskaia (@medgyna), “Почему пропадают менструации? Аменорея—это отсутствие менструаций.✔Если менструаций не было никогда в жизни—это первичная аменорея,” Instagram photo, August 12, 2018, https://www.instagram.com/p /BmYMv5pgEWU/; Tamilla Mamedova (@tamilla_doc), “Задержка месячных, что делать? Мы разбираем ситуацию, когда цикл регулярный, но в срок месячные не пришли,” Instagram photo, October 30, 2018, https:// www.instagram.com/p/BpkQhmilu_d/; (@doc.bogdanova), “ Мы разобрались с основными симптомами дефицита эстрогенов, а сегодня поговорим почему же возникает этот дефицит,” Instagram photo, October 17, 2019, https://www.instagram.com/p/B3tPG37ICdw/. 27.  Daria Iakovleva (@yakovleva_dora), “Сегодня хочу поговорить о теме, находящейся на стыке многих специальностей–#гинекология, #эндокринология, #психиатрия, #диетология, #спортивнаямедицина,” Instagram photo, October 25, 2017, https://www.insta gram.com/p/Barw_C2Dyvd/. 28.  Daria Iakovleva (@yakovleva_dora), “Диагностика. В мае 2017 года в печатном выпуске журнала,” Journal of Clinical Endocrinology & Metabolism (JCEM) были опубликованы клинические рекомендации,” Instagram photo, October 31, 2017, https://www.instagram .com/p/Ba7UsVCjsn-/; “Наконец, продолжу тему ФГА и поговорю сегодня о лечении (не прошло и года😂). В статье только общая ознакомительная информация),” Instagram photo, November 15, 2017, https://www.in stagram.com/p/BbhOgMen5YD/; “Продолжу говорить про лечение ФГА и сегодня подниму вопрос назначения гормональных препаратов. И хотя эта тема ближе врачам гинекологам-эндокринологам,” Instagram photo, November 16, 2017, https://www.instagram.com/p/Bbj9 -rUHtNn/. 29.  Jonathan R. Scarff, “Orthorexia Nervosa: An Obsession with Healthy Eating,” Federal Practitioner 34, no. 6 (June 2017): 36–39. 30.  Inna Pupkevich (@dr.inna_pupkevich), “Доброе утро! Ну что, вернёмся к нашей девушке, которая не могла забеременеть? Не забываем про ♥! В комментариях многие уловили суть проблемы,” Instagram photo, November 23, 2018, https://www.instagram. com/p/BqgzXtJHkMO/; “Здравствуйте! Продолжаем тему ФГА. Сегодня о диагностике. В первую очередь исключаются органические причины аменореи,” Instagram photo, November 29, 2018, https://www.insta gram.com/p/BqwQjpCn-Xq/; “Заключительная и самая важная часть про ФГА—о лечении. ♥мне за работу😊 В лечении ФГА первым шагом должна быть коррекция

энергетического обмена,” Instagram photo, December 4, 2018, https://www.instagram.com/p/Bq-QRS6ngaI/. In fact, there was a post on FHA in Russian before Pupke­ vitch’s, but I discovered it after completing this manuscript. Dr. Marina Berkovskaia (@doctor_abaita), “Рассказываю про функциональную гипоталамическую аменорею (ФГА) ФГА—это форма нарушения менструального цикла,” Instagram photo, June 5, 2018, https://www.in stagram.com/p/BjpXGJpF5P9/. 31.  Fomin Clinic (@fominclinic). 32. For example, endocrinologists Marina Berkovskaia (@abaita) and Anna Konovalova (@dr.anna_konovalova). 33.  Dmitrii Vadimovich Gusev, “Kliniko-patologicheskie aspekty funktsional’noi gipotalamicheskoi amenorei” (Kandidat dissertation, National Medical Research Center named after V. I. Kulakov, 2019). 34.  Dmitrii Gusev (@doctor.dgusev), “Часть 1. Для всех тех кто верит в полезность правильного питания, ЗОЖ, спорта и так далее. Пришло время сделать пост на тему, которой я занимаюсь в течение 3-х,” Instagram photo, June 6, 2018, https://www.instagram.com/p /BjrkEAHgT9G/. 35. Ibid. 36.  For example, Dmitrii Gusev (@doctor.dgusev), “Всем добрый вечер 😌 Я давно хотел это сделать и пожалуй самое время начать. Впереди вас ждет серия постов по моей любимой теме🔥,” Instagram photo, April 30, 2021, https://www.instagram.com/p/COTIbYHh7HB/; “Почему приходят менструации? Тайна. Завесу тайны удалось приоткрыть в конце 20 века. Сегодня я расскажу о гипотезах, которые не оправдали своих надежд,” Instagram photo, July 6, 2021, https://www.instagram.com/p /CQ_sMfkhyV-/; “ОПАСНЫЙ СПОРТ💪 Всем добрый вечер. Сегодня я еще поделюсь с вами фрагментом из предстоящего вебинара по ФГА,” Instagram photo, July 21, 2021, https://www.instagram.com/p/CRmLK0BBLjj/. 37.  Ellen Brady, Julia Segar, and Caroline Sanders, “‘You Get to Know the People and Whether They’re Talking Sense or Not’: Negotiating Trust on Health-Related Forums,” Social Science & Medicine 162 (August 1, 2016): 151–57, https://doi.org/10.1016/j.socscimed.2016.06.029. 38.  FHA as primary amenorrhea happens when a prepubescent child gets in a situation of energy deficiency and as a result does not experience menarche by the age of fifteen; FHA as a normogonadotropic amenorrhea means that energy deficiency and estrogen deficiency are obvious, there is a history of an ED and/or overtraining, but the LH level is above 3 ng/ml. These cases are often hard to distinguish from the so-called lean phenotype of polycystic ovarian syndrome (PCOS). For a summary of such conundrum, see “PCOS, Hypothalamic Amenorrhea Present Confusing Picture for Diagnosis, Treatment,” accessed August 19, 2021, https://www.healio.com/news/endocri nology/20171207/pcos-hypothalamic-amenorrhea-pres

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ent-confusing-picture-for-diagnosis-treatment. Dr. Gusev discussed this case in his post from January 18, 2021, https://www.instagram.com/p/CKMeShKBdH-/. 39.  For example, Anna Konovalova (@dr.anna_konovalova), “Крайности–наше всё! На каждом углу: “меньше ешь и больше трень!” И я в том числе . . . Мы ориентируемся на простое большинство “ленивых задниц,” Instagram photo, December 9, 2020, https://www .instagram.com/p/CIkOpikF-Di/; Olga Belokon (@doc tor_belokon), “- Ваш вес нормальный? 🤔Нормальный, это какой? Знаете ли вы, насколько ВАЖНО для вашего репродуктивного здоровья иметь нормальный вес и достаточный запас жировой ткани?,” https://www.insta gram.com/p/CHSfLUPH4w6/; Irina Ushkova (@irina_ushkova), “5 ПРИЗНАКОВ, ЧТО ВЫ НЕДОЕДАЕТЕ 🍝 Не забывайте ставить ♥! При нарушенных отношениях с едой и расстройствах пищевого поведения люди пытаются контролировать свои питание,” Instagram photo, May 17, 2021, https://www.instagram.com/p /CO9l7ouLK-O/. 40. The most prominent voices in this cohort are psychologist Irina Ushkova (@irina_ushkova) and Amsterdam-based psychologist Svetlana Bronnikova (@intueat). 41.  See, for example, Karina Bondarenko, Lela Dzhokhadze, and Pavel Kusnetsov (@true_gyn), Пришло время написать про функциональную гипоталамическую аменорею (ФГА)—вызванную не генетикой и какими-то органическими причинами, а все лишь слишком здоровым образом жизни,” Instagram photo, September 27, 2021, https://www.instagram.com/p/CUUd pECsxT2/ (September 27, 2021); Anastasia Degteva (@md. degteva), “Недавно выступала для врачей спортивной медицины с темой триады женщины-спортсменки (спасибо за приглашение),” Instagram photo, November 2, 2021, https://www.instagram.com/p/CVxZieygma6/ (3.11.2021); Irina Ushkova (@irina_ushkova), “КАК ВЕРНУТЬ МЕНСТРУАЦИЮ🤔 Нажимайте ♥: вам несложно, а мне приятно! Регулярная менструация—один из самых наглядных показателей женского здоровья,” Instagram, photo, November 5, 2021, https://www.instagram.com/p /CV4eqCYoWx4/; Natalia Kugatova (@gynendo_doc), “Я хотела написать полный эмпатии пост, посвящённый моим любимым пациенткам. Прекрасным девушкам, сила личности которых так велика, что не терпит никакого несовершенства в окружающем мире и в себе,” Instagram photo, January 12, 2022, https://www.instagram .com/p/CYoW_mxoOl7/.

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42.  Linda Rozmovits and Sue Ziebland, “What Do Patients with Prostate or Breast Cancer Want from an Internet Site? A Qualitative Study of Information Needs,” Patient Education and Counseling 53, no. 1 (April 1, 2004): 57–64, https://doi.org/10.1016/S0738-3991(03)00116-2, 61. 43.  We saw this Instagram page for the last time on September 6, 2021. 44.  Evelyn Tribole, Intuitive Eating: A Revolutionary Program That Works, 3rd ed. (New York: St. Martin’s Griffin, 2012). 45.  Marcia Herrin and Maria Larkin, Nutrition Counseling in the Treatment of Eating Disorders, 2nd ed. (New York: Routledge, 2012). 46. Sillence and Mo, “Communicating Health Decisions,” 245. 47.  Ibid., 156. 48.  For example, Kamilla (@kamilla.eats), Anastasia Chekmariova (@_i_am_enough_), and Natasha Shokun (@natasha_shokun). 49.  In general, Russian-language pregnancy accounts on Instagram received some scholarly attention. See Tiidenberg, “Odes to Heteronormativity” and Tiidenberg and Baym, “Learn It, Buy It, Work It.” 50. Jon Arcelus et al., “Mortality Rates in Patients with Anorexia Nervosa and Other Eating Disorders; A Meta-Analysis of 36 Studies,” Archives of General Psychiatry 68, no. 7 (July 2011): 724–31. 51. There is still no consensus in psychiatry if full ED recovery is possible, due to a relatively high chance of relapse in some eating disorders, especially anorexia nervosa, while in FHA recovery is defined as the restoration of ovulatory menstrual cycles. See, for example, Sahib S. Khalsa et al., “What Happens after Treatment? A Systematic Review of Relapse, Remission, and Recovery in Anorexia Nervosa,” Journal of Eating Disorders 5 (2017): 20; and Erin C. Accurso et al., “Parents Know Best: Caregiver Perspectives on Eating Disorder Recovery,” International Journal of Eating Disorders 53, no. 8 (2020): 1252–60. The proponents of cognitive behavioral therapy in ED treatment argue for its high potential in achieving full recovery: see Christopher G. Fairburn, Cognitive Behavior Therapy and Eating Disorders, 1st ed. (New York: The Guilford Press, 2008). I am thankful to clinical psychologist Irina Ushkova for bringing this book to my attention. 52.  On cancer patients’ Instagram pages, in the German context, see Julia Stüwe and Juliane Wegner, “Young Cancer on Instagram: A Paradox of Self-Chosen Exclusion,” M/C Journal 23, no. 6 (December 2, 2020).

SEC TION IX

BEYOND BIOETHICS?

CHAPTER 31

Neuroethics Mary Jean Walker

N

euroethics examines questions at the intersection of neuroscience, neurotechnology, and ethics. The term has been used to describe a field of inquiry since the early 2000s, following a large interdisciplinary conference titled “Neuroethics: Mapping the Field,” and foundational publications describing it as a distinct disciplinary area.1 Its development can be seen as a response to the novel choices and situations that arise from our increasing abilities to investigate, and intervene in, the brain. Some of the issues neuroethics examines overlap with those in bioethics. However, neuroethics extends into other areas of applied philosophy, for instance, the ethics of technology, law, and policing, and also generates questions within moral psychology and metaethics. Some claim neuroethics should be considered a separate area because the focus on the brain raises novel, distinctive issues. It is sometimes said that this is because the brain is the seat of the mind or the person, or more generally because of connections between the brain and things we care about, such as identity, self-understanding, subjective life, and self-awareness.2 Disciplinary self-definition aside, neuroethics has in the past twenty years established itself institutionally, with its own research programs, research centers, and regular conferences, and the foundation of two focused journals (Neuroethics in 2008 and AJOB Neuroscience in 2010).3 362

Neuroethics is usually divided into two main areas: the ethics of neuroscience, and the neuroscience of ethics (following Roskies).4 The ethics of neuroscience focuses on ethical questions arising in neuroscientific research and from the use neurotechnologies. This area is itself highly diverse, given there is a wide range of conditions with neurological bases—including neurodevelopmental and neurodegenerative disorders, mental illnesses, and disabilities—and a large and increasing number of applications of neural technologies. There are also questions connected to social justice, given inequalities in access to these technologies, and issues surrounding how the public interprets neuroscientific information. This area also generates empirical studies, such as surveys investigating the public acceptability of new technologies, or qualitative studies seeking to understand the impacts of particular technologies on recipients. The ethics of neuroscience is often focused on applied ethical questions, in the sense that it seeks ways to ensure best outcomes and avoid harm in the use of neurotechnologies. However, the development of technologies that provide new ways to examine and change human experience—or “human nature”—can force us to evaluate what it is that we value in human experience, and human nature, as a necessary part of ethical assessment of these technologies. Thus the area also generates theoretical investigations of concepts such as identity, authenticity, moral responsibility,

or privacy. Neuroethics requires us to examine how these concepts apply in novel situations made possible by new technologies, in order to discern whether their value to us is threatened by those technologies. The neuroscience of ethics examines questions arising from new kinds of information about our ethical concepts and practices from neuroscientific studies (along with surrounding investigations in cognitive science and psychology). Studies of brain structure and function have, for example, generated debate about the nature of moral decision-making, the neural basis of morally relevant states such as empathy or altruism, and the possibility of free will and moral responsibility. Thus neuroethics also includes debates on questions in normative moral psychology and metaethics. In what follows, I examine several main areas of debate within the ethics of neuroscience in section 1 and the neuroscience of ethics in section 2.

TH E E THICS O F NE U R O SCI E NCE The ethics of neuroscience comprises the majority of the volume of published research; just over 73 percent according to a recent bibliometric analysis.5 I describe four main areas in which there is debate: research ethics, understanding brains, changing brains, and public understanding of neuroscience. As noted earlier, the field is highly diverse; it is not possible in a short chapter to overview all of the issues discussed without overly sacrificing depth. Therefore, to give a flavor of the kinds of issues encountered in neuroethics, for each area I briefly note a range of issues discussed, then focus on overviewing one issue in more detail.

Research Ethics Neuroscientific research can involve difficult ethical challenges. Some of these challenges are novel, while some are familiar from human research ethics generally but likely to arise in more extreme ways. As an example of the latter, clinical research with people with neurological or mental disorders sometimes raises particular difficulties for obtaining

informed consent of participants. People with cognitive impairments, for instance, may have impaired capacities to understand the risks of research participation.6 People with severe intellectual disabilities may be considered especially vulnerable to harms from research participation, while people who are candidates for neurosurgical interventions may have exhausted other options, and so be medically vulnerable.7 There are also issues surrounding how to deal with information gained about a person’s brain in a study: a brain scan undertaken for one purpose might identify incidental problems such as presence of a growth or neurodegenerative disorder,8 or more speculatively, evidence of a personality disorder (something like this happened to neuroscientist James Fallon, who discovered in the course of his research that his own brain scan indicated psychopathic tendencies).9 Revealing such information to participants may be important for health reasons, or simply be preferred by research participants, but will need to be handled with care. These ethical challenges should not be considered overriding barriers to research. That could prevent research that could benefit people, itself an ethical problem, and would be overly paternalistic. Instead, researchers need to adopt protocols for additional protections to ensure research is conducted ethically. One role of neuroethicists has been to engage with neuroscientists and regulators to develop appropriate protocols to manage these and other issues in research studies. Recently, discussion has arisen surrounding the generation and use of brain tissues in vitro. Neuroscientists can now grow human brain tissue in culture using induced pluripotent stem cells.10 One type of tissue culture relies on the cells’ self-organizing capacities to develop into neural organoids or “minibrains.” Although these differ from real brains in many respects, they mimic various aspects of neural function and structure. They have a potential wide range of uses, such as research on disease etiology and progression, drug development and testing, and personalizing treatment regimens.11 Both neuroscientists and ethicists have raised questions about whether or when research using N e u r oethics 

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organoids could become ethically problematic.12 Currently organoids do not have capacities for suffering, or any sort of experience. They do not interact with their environment or have higher cognitive functions. But if organoids do come to develop such capacities as the technology develops, it may be unethical to subject them to research procedures, or to create them for this purpose. Further, it is not clear how we would know whether such capacities were present. Some researchers suggest comparisons with fetal brain development, while others argue we should focus on credible candidates for the neural correlates of consciousness.13 Given the uncertainties, some argue for a precautionary approach in using neural organoids; that is, that they should not be used unless it can be shown they do not have these capacities.

Understanding Brains Neurological information can be gathered by several methods. Here I focus on functional magnetic resonance imaging (fMRI), which is generating increasing data on what brain regions are associated with particular behaviors, cognitions, or emotions. Since the brain is never entirely inactive, fMRI research involves taking two scans of a person’s brain: a “baseline” scan and a scan while the person undertakes some task of interest.14 For instance, researchers may have participants view emotive pictures, undertake a calculation, or respond to moral dilemmas. Baseline neural activity is then subtracted from task-activity to indicate parts of the brain associated with that task. Analyses divide the brain into thousands of small areas, known as voxels, and activity is compared per voxel. fMRI research involves identifying patterns of activity in individual brains and averaging these patterns across the research population. Some research involves then making a “reverse inference”: researchers sometimes infer, for example, that if a person is using parts of the brain shown to be typically active in emotional arousal, then they are experiencing emotional arousal; or that if a person is using brain areas usually activated during visual processing, then they are undertaking visual processing. That is, fMRI offers the possibility of mapping mental 364 

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states to brain states and (if we accept reverse inferences), to read mental states from brain states. Neuroethical issues arise when we consider what uses this information may have. Brain imaging has been used to investigate whether people in persistent vegetative states have conscious experience, which may be relevant to whether or not their lives are, to them, worth living.15 This debate has practical ethical implications relating to end-of-life decisions, and engages with theoretical literature about the nature of consciousness and its relation to brain states. Other issues arise from findings that people with psychopathic traits often have certain abnormalities in brain structure and function (e.g., in the ventromedial prefrontal cortex [vmPFC] and amygdala). Some argue this brain imaging evidence supports regarding psychopaths as incapable of moral responsibility.16 Imaging has been increasingly introduced into criminal trials as part of insanity defenses, although some dispute its relevance.17 Again, this debate centers on practical ethical concerns, surrounding the legal treatment of people with psychopathic traits, but interacts with a theoretical literature, here on moral responsibility. To give a more detailed example, consider debates about mental privacy. Research suggests that brain imaging may be able to identify profiles of neural activity associated with lying, implicit bias, dispositions toward violence (including those associated with psychopathic traits), and even character traits such as a disposition toward honesty.18 This information might be put to a range of uses. As noted earlier, information on mental disorders has been offered as evidence in criminal trials. Conversely, psychopathy has been associated with increased recidivism, and there are also fMRI studies that associate recidivism directly with patterns of brain function.19 Thus brain imaging could be used to argue for longer sentences, or against granting parole.20 fMRI has not yet (to my knowledge) been used directly by law enforcement agencies for lie detection purposes, and early attempts to introduce fMRI lie detection evidence in courts in the United States were disallowed.21 However, several commercial companies offer lie detection services using fMRI

and suggest it can be used to reduce insurance fraud, for natural security purposes, in family law, and even in personnel selection by employers. Another company is developing a device that will monitor a person’s level of concentration while driving, and intervene to gain their attention if concentration is low.22 Such information could also have legal implications, for instance, in cases of traffic accidents. Neuroethicists have explored potential problems with some of these uses. Some relate to the limitations of the technology. The method of developing imaging “profiles” for particular pathologies or tasks involves averaging over a population, and making a reverse inference, as described before. But reverse inferences have been argued to be invalid, or at least not strong. We know there are individual differences in brain structure and function, such that people may use different parts of the brain for the same functions, or the same part of the brain for different functions. The brain is highly plastic and particular brain areas can come to be used for new purposes within individuals, as occurs in some patients following stroke or other neural insult.23 Thus it may not be valid to conclude that a particular individual whose scan fits a certain profile is therefore lying, or has psychopathic traits, or is predisposed to violent recidivism, even if their brain function fits statistically common patterns associated with those traits or behaviors. This is strengthened by noting that sample sizes in imaging studies are often small.24 Further, research utilizes laboratory situations that may relevantly differ from the contexts of application. Lie detection technology, for instance, draws on fMRI studies where participants were instructed to lie. Being instructed to lie might involve different neurological processes than real deception. Study techniques can also introduce confounders, such as movement involved in completing the task, which might also affect brain activity.25 Another limitation is that subjects could interfere with results fairly easily, for example, by holding their breath during fMRI.26 Given such issues, it is important that these technologies are not taken to provide stronger evidence than they really do, particularly in light of evidence that people find neuroimaging information

compelling, and judge it to make an explanation stronger even where it is not actually relevant to a given explanation.27 Misuse of neuroimaging information could lead to injustices. People might serve longer sentences than they deserve; be disbelieved where they should be believed, or vice versa, in decisions related to national security or criminal investigations; be wrongly denied insurance claims; or miss out on particular jobs. Results might easily be misinterpreted by, for example, personnel recruiters—who cannot be expected to understand the subtleties of the research method—leading in effect to a kind of neurological discrimination. While there are thus reasons to question some uses of brain imaging, it can also be argued that failing to take such information into account represents a lost opportunity to make existing systems more accurate. For instance, in relation to parole decision-making, legal systems already use a range of information to try to predict likelihood of recidivism, including both clinical and actuarial data.28 The role of neuroethicists is often to identify existing or possible ethical problems with using technologies, not in order to prevent their use but to ensure they are used in the most appropriate ways. For instance, since fMRI method relies on statistical similarity to a profile, at least some of these issues would remain even if problems of small sample sizes and accuracy were overcome by future developments of technology. In order to justify these uses of neuroimaging, however, we would at least need to have a better understanding of how accurate relevant reverse inferences are, and some principled reason to accept specific levels of accuracy for particular kinds of decisions (which may be partly evaluative).

Changing Brains Neurotechnologies also allow us to intervene in and change brains, using psychopharmaceuticals and brain implants, for example. Debates have developed around memory modification, in relation to emotion-blunting beta-blocker drugs that can impact memory formation, and more recently optogenetics.29 While such technologies have shown promise N e u r oethics 

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in treating or preventing PTSD, they could interfere with various positive functions of memory, in learning and self-formation. There is an extensive debate on the enhancement of cognitive capacities such as memory, concentration, alertness, or even intelligence.30 This partly mirrors the larger enhancement debate, examining potential positive and negative consequences of enhancement and the role of individual liberty to decide to enhance. Both enhancement and memory modification raise further worries about changing what it means to be human. Here I will focus on debate surrounding deep brain stimulation (DBS) as a more detailed example. DBS involves implanting a device into a person’s brain, connected by wires to controlling equipment, usually implanted in the chest. The device electrically stimulates specific parts of the brain and once implanted can be switched on or off, or adjusted. It is used to treat the motor symptoms of Parkinson’s disease, dystonia, essential tremor, epilepsy, and obsessive compulsive disorder. There is research on DBS to treat depression, substance use and gambling disorders, and chronic pain. While DBS is considered a highly successful treatment, it can have unusual effects on people’s mood, behavior, and even personality. This can occur as a side effect of treatment—if a person who has DBS for essential tremor finding they also become more impulsive—or can be part of the aim of treatment— such as changing mood to treat depression. Some patients describe these as changes to their self or identity, or as challenging for their self-understanding or relationships.31 DBS can sometimes have extreme side effects such as mania or hypersexuality. In the classic study by Schüpbach and colleagues,32 some patients reported new experiences of depression, anxiety, or apathy post-surgery. There were reports of changed self-experience: “I don’t feel like myself anymore,” “I feel like an electronic doll.” One patient described losing the purpose that had previously given their life meaning—fighting their disease—and others experienced disruptions to their relationships, seemingly relating to changed spousal roles. Participants in a study by Gilbert similarly reported changes in mood or activities. Several noted 366 

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feelings of self-estrangement: “I felt like I had lost my true self, it was way behind me”; and some reported changes in the perceptions of others: “My family say they grieve for the old [me].”33 A study by de Haan and colleagues elicited similar reports of self-estrangement, but also converse experiences of feeling DBS made them more themselves: “I think I am coming back to my own self.”34 An example of extreme side effects is the case of patient “Walter B,” who reportedly experienced hypersexuality. This eventually developed into watching first adult, and then child pornography, for which he was eventually arrested.35 It is important to note that these experiences of changed mood, behavior, and sense of self can be experienced as either positive or negative by individuals, and these evaluations do not necessarily reflect whether the treatment is clinically successful. Some difficulties people experience seem to relate to simply no longer needing to manage the symptoms of their disease, which can involve extensive adjustment by the patient and those around them.36 Other difficulties relate to the person’s subjective sense of self. Whether this occurs may depend on how the patient evaluates the changes, whether they regard the device as an alien presence, and whether the device is interpreted as the source of post-surgical characteristics.37 Neuroethicists have made a range of arguments about DBS. One is the practical, clinical point that we should recognize that some patients experience disruptive, difficult changes that may not be recognized by usual clinical (physical or psychological) measures. Doctors should explain these possibilities prior to treatment, and certain kinds of follow-up care, perhaps including counseling, could usefully be provided. Some further argue that DBS is a “threat” to identity.38 This could be itself an ethical concern insofar as people generally value being themselves. It could also have other ethical implications. If DBS causes someone to be a “different person,” then the non-stimulated person may not have the right kind of first-personal relation to the stimulated person to justify making decisions affecting that person;39 and the non-stimulated person may not be morally responsible for the actions of the stimulated person (making it, e.g., unjust to punish Walter B for his crimes).

Several contributors to this debate have argued that regarding DBS to literally change identity is not warranted. After all, persons usually change their personalities, moods, and behaviors over time, so such changes are not inconsistent with identity. An alternative way changes from DBS have come to be framed is in terms of authenticity.40 We might think that change arising from DBS is problematic not because it is a change, but because it is an inauthentic sort of change, arising as it were from the device rather than from the person themselves. A response is to point out that human lives are intricately intertwined with many technologies; it is not clear why the simple presence of a technology should make someone’s being more cheerful and impulsive (say) less authentic. Some argue then that it is not the source of the changes that is relevant, but whether or not the patient is able to identify with their actions and personalities—whether they can recognize actions or traits as resulting from their choices, and regard them as expressions of their character. These kinds of response draw on work in moral psychology that regards character traits or actions to properly “belong” to a person when the person identifies with them, or regards them as part of their self-conception.41 This also allows recognition of, and an explanation for, why DBS sometimes allows people to feel more themselves. They might identify with their post-surgical behavior and personality more strongly than those they had without the DBS. This has been fleshed out in several ways in the DBS literature, in analyses that attempt to further pinpoint when, if ever, DBS should raise ethical worries. A number of authors draw on narrative and relational approaches to identity. Narrative identity theories allow that a person’s identity involves a reflexive self-conception that changes over time, drawing on the idea that people understand their lives using the same structures used to understand stories. Relational approaches emphasize the role of others in the construction and expression of identity. Baylis, for example, draws on narrative and relational ideas to argue that DBS is not a threat to identity, but could be problematic if it threatens a person’s abilities to “contribute to the authoring of her own life.”42 Mackenzie

and Walker argue that the ethically relevant concept to consider in DBS is not authenticity but (relational) autonomy, critiquing the notion of authenticity.43 Goddard argues DBS may be ethically problematic if it undermines the competences involved in being an autonomous agent.44 Gallagher draws on theories of relational autonomy and argues for the use of a “pattern theory” of the self (which regards “self” to involve a range of elements that interact in dynamic patterns) to understand DBS-related changes.45 These approaches allow that, although there may be cases where DBS threatens autonomy, there are also cases where it supports autonomy. Indeed, the latter seems likely to be more frequent since people typically pursue DBS to improve or restore various capacities, such as for choice and movement.46 Recently, some have argued that the idea that DBS changes people has become exaggerated and could be harmful if it discourages those who might benefit from the treatment from seeking it.47 Most of the data about personality changes come from qualitative studies, and we do not have good data on their overall frequency. Bluhm and colleagues emphasize the need to broaden the debate to examine issues most commonly experienced by DBS patients, often around adjustment.48 Neuroethicists should certainly ensure that they do not overblow problems, and would do well to better distinguish when discussions aim to clarify practical ethical issues, and when it draws on empirical examples to investigate concepts of ethical and philosophical interest.

Public Perceptions Empirical studies demonstrate that neuroscientific information and images can be very compelling,49 but there is scope for misinterpretation. In particular, information about how people’s brains are is sometimes interpreted in an essentialist way, as showing that the person has some characteristic or capacity essentially or necessarily. While this affects many issues in neuroethics, an area where it has been argued to be problematic is in relation to research into neural differences between the sexes/genders.50 There is an empirical literature examining functional N e u r oethics 

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and structural neural differences between men and women. In the popular press such research is sometimes reported as showing that men and women’s brains are essentially different, and that such differences are “hard-wired,” determined by biological sex. Several authors have argued this presentation of the research—and in some cases, the research itself— commits or encourages “neurosexism.” Neurosexism is “neuroscientific claims that reinforce and legitimate traditional gender stereotypes and roles in ways that are not scientifically justified.”51 Critics have argued that some neuroscience research is not scientifically justified by examining the methodology used. Most studies are based on very small sample sizes (usually less than forty).52 Bluhm examines the way that fMRI research makes comparisons by voxel. At the same time, they rely on statistical comparison across participants, and therefore need to rely on setting a standard for statistical significance. By convention, results are judged statistically significant if there is a greater than 0.05 probability that the difference is not the result of chance. This means that one in twenty statistical correlations will be the result of chance. However, if our sample size is effectively tens of thousands of voxels, it is actually likely that some spurious correlations will be detected (even with stricter levels of statistical significance).53 Fine also examines how social processes further skew the research literature. Fine notes the preference toward publishing positive over null results: so studies finding differences in male and female brains are more likely to be published than those finding no difference. She shows that a 1995 study that reported that male brains show greater lateralization continues to be read and cited years after meta-analytical reviews showed that its results were not significant, and at higher rates than those reviews.54 Further, the studies typically rely on the use of reverse inferences to come to conclusions about how male and female cognition differs, and these may not be valid, as noted before.55 Critics point out that in this area, the use of reverse inferences can open the way for gender stereotypes to enter into seemingly objective research. For instance, in the 1980s and 1990s 368 

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studies seeming to show greater male brain lateralization were interpreted by some scientists by linking greater lateralization to visual-spatial processing. This correlation appears to have been suggested, not because of any theoretical understanding of lateralization that would link it to visual-spatial processing, but due to a pre-existing idea that men are better at visual-spatial reasoning.56 Bluhm compares analyses of three studies showing higher, lower, and similar activity between men and women in the medial prefrontal cortex, which were all interpreted to support the view that women are more emotional than men.57 This is not to say that all research is affected by social biases—but it does show how social values can infiltrate research at a number of steps. An overarching issue is that the popular presentation of this kind of research often presents it as showing that biological sex determines brain structure and function, and therefore styles of thought and mental capacities. This is despite knowledge that the brain is highly plastic; it forms and changes in response to environmental factors and is highly influenced by social factors. Since social stereotypes affect how we behave and how others treat us, whatever sex/gender brain differences there are could be explained by social as well as (or instead of) biological differences. That this appears to be ignored in favor of biological explanations seems to both reflect and reinforce sexist attitudes, making social inequalities around gender appear to be a natural consequence of biology rather than social issues to be addressed.58

THE NEUROSCIENCE OF ETHICS The neuroscience of ethics examines what neuroscientific studies can tell us about our moral concepts and practices. Clinical neuroscience and imaging studies have examined what occurs in the brain during a number of tasks that have moral content, and may have implications for old philosophical questions. One example is neuroscientific studies that have been claimed to show that free will is an illusion.59 This has led to debates about the correct interpretation of such data as well as their implications for moral

responsibility, which is usually thought to rely on the freedom to choose one’s actions.60 There is also discussion of the neurological bases of various aspects of moral behavior. Here I will focus on a debate that has emerged about the roles of reason and emotion in moral decision-making. In this area, the neuroscientific data are interpreted in the context of broader studies in cognitive science and psychology examining the role of affect in moral judgment. Psychologist Jonathan Haidt found that people are more likely to judge a given action to be morally wrong when they are stimulated to have an unrelated disgust reaction (e.g., by being exposed to a bad smell).61 He also examined people’s responses to vignettes designed to elicit an affective response but that involve no harm (such as eating one’s pet dog after it is killed by a car). He found that although most people judge such actions wrong, they cannot explain why, a phenomenon he calls “moral dumbfounding.” When pressed, people gave explanations that contradicted the scenario as given, changed their stories, and at times simply stated they were sure the action was wrong but could not explain why.62 From such research Haidt develops a view on which moral judgments are based on automatic, affective processes. The role of reasoning in making moral judgments is (at least for the most part) really post-hoc rationalization of this initial, affective response. At the same time, studies into moral decision making with fMRI began to be published. A pivotal study is Greene et al., which took fMRI scans of participants while they responded to moral dilemmas.63 Greene et al. contrasted a “personal-moral dilemma” with an “impersonal-moral” dilemma, both versions of the trolley problem. That is, the personal-moral dilemma asked participants whether it was right to directly harm one person to save five others by pushing a large person off a footbridge onto a train track in order to prevent an oncoming train killing five people who were on the tracks. The impersonal-moral dilemma asked whether it is right to flick a switch to divert an oncoming train from a track on which there are five people, onto a track where there is only one person. Typically, people judge that

it is right to flick the switch, but wrong to push the stranger, a seeming inconsistency that philosophers have long tried to understand. Greene and colleagues hypothesized that responses could be explained by the emotional salience of personal-moral cases—for most of us, the idea of pushing someone off a bridge triggers negative emotion. fMRI results confirmed this hypothesis, showing increased activity in areas of the brain associated with emotional processing (the medial frontal gyrus, posterior cingulate gyrus, and bilateral superior temporal sulcus) while responding to the footbridge case, but not when responding to the switch case. In later work, Greene and colleagues associate personal-moral intuitions with deontology and impersonal-moral decisions with consequentialism.64 In the former, people appeal to an intuitive sense that some ways of treating others are wrong, irrespective of the consequences of the different options, while in the latter, we prioritize the “greatest good for the greatest number.” (Ironically, this kind of study appears to show that deontology is mostly based on emotion and not reason.) A range of surrounding evidence is cited as supporting this view. For example, patients with conditions known to impair emotional processing (such as vmPFC damage, dementia, or psychopathy) are more likely to give utilitarian answers to trolley cases, while people who show physiological signs of emotional arousal, or are induced to have emotional arousal, are more likely to give deontological responses.65 Interestingly, Greene goes further than presenting this as a descriptive hypothesis about how we in fact make moral decisions, and uses it to argue for consequentialism as a normative moral theory. He recognizes that we cannot directly infer the latter from the former.66 Nonetheless, Greene suggests that the reason moral decision-making tends to rely on automatic, emotional processing is that we evolved in an environment in which the moral decisions that needed to be made were ones that took place in direct contact with those affected. Moral intuitions play an evolutionary purpose in supporting group survival, so they reflect needs to make fast decisions about how to treat those around us. However, we now live in a N e u r oethics 

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quite different environment, in which our decisions may affect strangers on the other side of the world, who we will never meet.67 If we accept this explanation of personal-moral intuitions, it gives us reason to doubt they are the best way to make decisions in our current environment. Specifically, for Greene, the explanation should reduce our confidence in the value of deontological intuitions, and provide us with a reason to base decision-making instead on more effortful, “rational” consequentialist thinking he regards as. Several critiques of these views focus on the methodology of the scientific studies. Some question the validity of drawing such general conclusions from evidence derived in the artificial situation of responding to moral dilemmas in a lab.68 Others note the use of reverse inferences, and point out that the areas taken to be “emotional” areas in Greene’s classic study are known to have many functions.69 Other critiques focus on the conceptual arguments. A number of authors point out that this argument for consequentialism relies on the idea that “impersonal” reasoning is more reliable in today’s environment. But if we think this is true, it is not because of the neuroscientific evidence linking that style of moral decision-making to certain brain areas, or other styles of moral decision-making to emotional brain areas. That is, the arguments work by assuming, not by demonstrating, that consequentialism gives us answers to moral dilemmas that are more correct (or more appropriate to today’s environments). To put it another way, even if we accept that deontological intuitions are linked to emotion, this is not a reason to think they are less likely to be accurate. That claim must be based on some other correlation between deontological intuitions and inaccuracy.70 Others question the underlying assumptions about the differences between reason and emotion.71 The traditional distinction between reason and emotion was strongly challenged by work in psychology and philosophy during the 1980s and 1990s, which suggested that emotions can have cognitive content: an emotion can bring to our attention information that is salient to particular decisions. Although this information may not always be consciously 370 

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accessible, emotions are not irrational.72 Although scientists such as Haidt and Greene usually present their views not in terms of reason and emotion, but in terms of automatic, affective processes and controlled, conscious processes (known as “dual process theory”), there is still a tendency to regard affective processes as unable to convey information or provide insight, and this fails to take cognitivism about the emotions fully into account.

CO N C LU S I O N Neuroethics is a highly diverse field. In the ethics of neuroscience, discussion often begins by examining particular applied ethical questions arising in neuroscientific research, or in the applications of neurotechnologies. Many such questions connect to theoretical debates in ethics or philosophy, so that neuroethics can be seen to involve both drawing on the resources of philosophical ethics to deepen our understanding of applied questions, and to test and develop the literature on ethical concepts such as privacy, personhood, or moral responsibility. In the neuroscience of ethics, our increasing understanding of the brain both extends on existing ethical debates, and raises new questions for moral psychology and metaethics. Neuroethics researchers can thus play a range of roles, from focusing on the needs of particular patient groups, to engaging in conceptual debate about ethical or philosophical concepts and values, to contributing to understanding of moral theory.

N OT E S 1.  Adina Roskies, “Neuroethics for the New Millenium,” Neuron 35 (2002): 21–23; Dana Foundation, “Neuroethics: Mapping the field,” https://dana.org/article/neuroeth ics-mapping-the-field/, accessed September 1, 2021. 2.  Martha Farah, “Neuroethics,” in Penn Centre Guide to Bioethics, eds. Vardit Ravitsky, Autumn Feister, and Arthur Caplan (Dordrecht: Springer, 2009), 71; Laura Specker Sullivan and Sara Goering, “Neuroethics,” in eLS, ed. Angus Clarke (Chichester: John Wiley and Sons), 2. 3. Fernando Vidal and Michelle Piperberg, “Born free: The Theory and Practice of Neuroethical Exceptionalism,”

in Debates about Neuroethics, eds. Eric Racine and Julian Aspler (Dordrecht: Springer, 2017), 68. 4.  Roskies, “Neuroethics for the New Millenium,” 21. 5. Jon Leefmann, Clement Levallois, and Elisabeth Hildt, “Neuroethics 1995—2012: A Bibliometric Analysis of the Guiding Themes of an Emerging Research Field,” Frontiers in Human Neuroscience 10 (2016): 336. 6. Mary Jean Walker et al., “Induced Pluripotent Stem Cell-Based Systems for Personalising Epilepsy Treatment: Research Ethics Challenges and New Insights for the Ethics of Personalised Medicine,” AJOB Neuroscience [online first] (July 2021), https://doi.org/10.1080/21507740.2021.1949404. 7.  Paul Ford, “Vulnerable Brains: Research Ethics and Neurosurgical Patients,” Journal of Law, Medicine, and Ethics 37, no. 1 (2009): 73–82. 8.  Judy Illes et al., “Incidental Findings in Brain Imaging Research,” Science 311, no. 5762 (2006): 783–84. 9.  Joseph Stromberg, “The Neuroscientist Who Discovered He Was a Psychopath,” Smithsonian Magazine, November 22, 2013, https://www.smithsonianmag.com/science-na ture/the-neuroscientist-who-discovered-he-was-a-psycho path-180947814/. 10.  Madeline Lancaster and Juergen Knoblich, “Generation of Cerebral Organoids from Human Pluripotent Stem Cells,” Nature Protocols 9, no. 10 (2014): 2329–40. 11.  Jeremy M. Crook, Gordon Wallace, and Eva Tomaskovic-Crook, “The Potential of Induced Pluripotent Stem Cells in Models of Neurological Disorders: Implications on Future Therapy,” Expert Review of Neurotherapeutics 15 (2015): 295–304. 12.  Julian Koplin and Julian Savulescu, “Moral Limits of Brain Organoid Research,” The Journal of Law, Medicine & Ethics 47, no. 4 (2019): 760–67; Andrea Lavazza and M. Massimini, “Cerebral Organoids: Ethical Issues and Consciousness Assessment,” Journal of Medical Ethics 44, no. 9 (2018): 606–10; Megan Munsie, I. Hyun, and J. Sugarman, “Ethical Issues in Human Organoid and Gastruloid Research,” Development 144, no. 6 (2017): 942–45. 13. Jonathan Birch and Heather Browning, “Neural Organoids and the Precautionary Principle,” American Journal of Bioethics 21, no. 1 (2021): 56–58. 14.  Cordelia Fine, “Is There Neurosexism in Functional Neuroimaging Investigations of Sex Differences?,” Neuroethics 6, no. 2 (2013): 369–409. 15.  Neil Levy, “Neuroethics,” in The International Encyclopedia of Ethics, ed. Hugh LaFollette (New York: Blackwell, 2013), 3580–89. 16. David Shoemaker, Responsibility from the Margins (Oxford: Oxford University Press, 2015). 17. Michael Vitacco et al., “The Limited Relevance of Neuroimaging in Insanity Evaluations,” Neuroethics 13, no. 3 (2020): 249–60; Walter Glannon, “Moral Responsibility and the Psychopath,” Neuroethics 1, no. 3 (2008): 158–66.

18. Martha Farah et al., “Functional MRI-Based Lie Detection: Scientific and Societal Challenges,” Nature Reviews Neuroscience 15, no. 2 (2014): 124; Adina Roskies, “Neuroethics,” in The Stanford Encyclopedia of Philosophy, ed. Edward N. Zalta, https://plato.stanford.edu/archives /spr2021/entries/neuroethics/, accessed August 29; Carl Delfin et al., “Prediction of Recidivism in a Long-Term Follow-up of Forensic Psychiatric Patients: Incremental Effects of Neuroimaging Data,” PLoS One 14, no. 5 (2019). 19.  Marcello Ienca and Roberto Andorno, “Towards New Human Rights in the Age of Neuroscience and Neurotechnology,” Life Sciences, Society and Policy 13, no. 1 (2017): 5. 20.  Russell Poldrack et al., “Predicting Violent Behavior: What Can Neuroscience Add?,” Trends in Cognitive Sciences 22, no. 2 (2018): 111–23. 21.  Farah et al., “Functional MRI-Based Lie Detection,” 128. 22. Ienca and Andorno, “Towards a New Human Rights,” 7. 23.  Robyn Bluhm, “New Research, Old Problems: Methodological and Ethical Issues in fMRI Research Examining Sex/Gender Differences in Emotion Processing,” Neuroethics 6, no. 2 (2013): 319–30. 24.  Poldrack et al., “Predicting Violent Behavior,” 119. 25.  Farah et al., “Functional MRI-Based Lie Detection,” 125. 26.  Poldrack et al., “Predicting Violent Behavior,” 118. 27.  Deena Weisberg et al., “The Seductive Allure of Neuroscience Explanations,” Journal of Cognitive Neuroscience 20, no. 3 (2008): 470–77. 28.  Poldrack et al., “Predicting Violent Behavior,” 112. 29.  Jacquelyn Slomka, “Playing with Propranolol,” Hastings Centre Report 22, no. 4 (1992): 13–17; Alexandre Erler, “Does Memory Modification Threaten Our Authenticity?,” Neuroethics 4, no. 3 (2011): 235–49; Przemysław Zawadzki and Agnieszka K. Adamczyk, “Personality and Authenticity in Light of the Memory-Modifying Potential of Optogenetics,” AJOB Neuroscience 12, no. 1 (2021): 3–21. 30.  Erik Parens, “Authenticity and Ambivalence: Toward Understanding the Enhancement Debate,” Hastings Center Report 35, no. 3 (2005): 34–41. 31. These types of change are continuous with those observed in older neurotechnologies, notably the psychopharmaceutical Prozac, but I will leave this aside. 32.  Marya Schüpbach et al., “Neurosurgery in Parkinson Disease: A Distressed Mind in a Repaired Body?,” Neurology 66, no. 12 (2006): 1811–16. 33.  Frederic Gilbert, “Deep Brain Stimulation: Inducing Self-Estrangement,” Neuroethics 11, no. 2 (2018): 159. 34.  Sanekke De Haan et al., “Becoming More Oneself? Changes in Personality Following DBS Treatment for Psychiatric Disorders: Experiences of OCD Patients and General Considerations,” PLoS One 12, no. 4 (2017): 12.

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35.  Nancy S. Jecker and Andrew L. Ko, “Is That the Same Person? Case Studies in Neurosurgery,” AJOB Neuroscience 8, no. 3 (2017): 162. 36.  Frederic Gilbert, “The Burden of Normality: From ‘Chronically Ill’ to ‘Symptom Free’: New Ethical Challenges for Deep Brain Stimulation Postoperative Treatment,” Journal of Medical Ethics 38, no. 7 (2012): 408–12; Maxence Gaillard, “Neuroessentialism, Our Technological Future, and DBS Bubbles,” Neuroethics 14, no. 1 (2021): 39–45. 37.  Gaillard, “Neuroessentialism,” 39–45; Shaun Gallagher, “Deep Brain Stimulation, Self and Relational Autonomy,” Neuroethics 14, no. 1 (2021): 32. 38.  Walter Glannon, “Stimulating Brains, Altering Minds,” Journal of Medical Ethics 35, no. 5 (2009): 289–92; Karsten Witt et al., “Deep Brain Stimulation and the Search for Identity,” Neuroethics 6, no. 3 (2013): 499–511. 39.  Sabine Müller, Merlin Bittlinger, and Henrik Walter, “Threats to Neurosurgical Patients Posed by the Personal Identity Debate,” Neuroethics 10, no. 2 (2017): 299–310. 40.  Veronica Johansson et al., “Authenticity, Depression, and Deep Brain Stimulation,” Frontiers in Integrative Neuroscience 5, no. 21 (2011): 1–3; Felicitas Kraemer, “Me, Myself and My Brain Implant: Deep Brain Stimulation Raises Questions of Personal Authenticity and Alienation,” Neuroethics 6, no. 3 (2013): 483–97. 41.  Harry Frankfurt, “Freedom of the Will and the Concept of a Person,” in The Importance of What We Care About, ed. Harry Frankfurt (Cambridge: Cambridge University Press, 1988); Christine Korsgaard, The Sources of Normativity (New York: Cambridge University Press, 1996). 42.  Françoise Baylis, “‘I Am Who I Am’: On Perceived Threats to Personal Identity from Deep Brain Stimulation,” Neuroethics 6, no. 3 (2013): 513–26. 43.  Catriona Mackenzie and Mary Jean Walker, “Neurotechnologies, Personal Identity, and the Ethics of Authenticity,” in Handbook of Neuroethics, eds. Jens Clausen and Neil Levy (Dordrecht: Springer Netherlands, 2015); Mary Jean Walker and Catriona Mackenzie, “Neurotechnologies, Relational Autonomy, and Authenticity,” International Journal of Feminist Approaches to Bioethics 13, no. 1 (2020): 98–119. 44.  Eliza Goddard, “Deep Brain Stimulation through the ‘Lens of Agency’: Clarifying Threats to Personal Identity from Neurological Intervention,” Neuroethics 10, no. 3 (2017): 325–35. 45.  Gallagher, “Deep Brain Stimulation,” 31–43. 46.  Julia Sophia Voigt, “Bodily Felt Freedom: An Ethical Perspective on Positive Aspects of Deep Brain Stimulation,” Neuroethics 14, no. 1 (2021): 45–57. 47.  Frederic Gilbert, John Noel M. Viaña, and Christian Ineichen, “Deflating the ‘DBS Causes Personality Changes’ Bubble,” Neuroethics 14, Suppl. 1 (2021): 1–17. 48.  Robyn Bluhm, Laura Cabrera, and Rachel McKenzie, “What We (Should) Talk about When We Talk about Deep

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Brain Stimulation and Personal Identity,” Neuroethics 13, no. 3 (2020): 289–301. 49.  Weisberg et al., “The Seductive Allure,” 470–77. 50.  Most of this literature uses “sex/gender” to recognize that brain structure and function may be affected by both biology (sex) and the social environment (gender), and it may be impossible to disentangle these effects. 51. Cordelia Fine, “Neurosexism in Functional Neuroimaging: From Scanner to Pseudo-science to Psyche,” in The SAGE Handbook of Gender and Psychology, eds. Michelle Ryan and Nyla Brancombe (Newbury Park, CA: SAGE, 2013), 45. 52.  Fine, “Is There Neurosexism,” 372–74. 53.  Bluhm, “New Research,” 322. 54.  Fine, “Is There Neurosexism,” 378. 55.  Fine, “Neurosexism in Functional Neuroimaging,” 49. 56.  Fine, “Neurosexism in Functional Neuroimaging,” 50. 57.  Robyn Bluhm, “Self-Fulfilling Prophecies: The Influence of Gender Stereotypes on Functional Neuroimaging Research on Emotion,” Hypatia 28, no. 4 (2013): 870–86. 58. Isabelle Dussauge and Anelis Kaiser, “Neuroscience and Sex/Gender,” Neuroethics 5, no. 3 (2012): 211–15; Rebecca Jordan-Young and Raffaella Rumiati, “Hardwired for Sexism? Approaches to Sex-Gender in Neuroscience,” in Neurofeminism, eds. Robyn Bluhm, Anne Jaap Jacobson, and Heidi Maibom (Basingstoke: Palgrave Macmillan, 2012), 105–20. 59.  Benjamin Libet, Curtis A. Gleason, Elwood W. Wright, and Dennis K. Pearl, “Time of Conscious Intention to Act in Relation to Onset of Cerebral Activity (Readiness-Potential),” Brain 106, no. 3 (1983): 623–42. 60.  Specker Sullivan and Goering, “Neuroethics.” 61.  Jonathan Haidt, The Righteous Mind: Why Good People Are Divided by Politics and Religion (New York: Vintage, 2012). 62.  Jonathan Haidt, “The Emotional Dog and Its Rational Tail: A Social Intuitionist Approach to Moral Judgment,” Psychological Review 108 (2001): 814–34. 63.  Joshua Greene et al., “An fMRI Investigation of Emotional Engagement in Moral Judgment,” Science 293, no. 5537 (2001): 2105–8. 64.  Joshua Greene, “From Neural ‘Is’ to Moral ‘Ought’: What Are the Moral Implications of Neuroscientific Moral Psychology?,”Nature Reviews Neuroscience 4 (2003): 847–50; Joshua Greene, “Beyond Point-and-Shoot Morality: Why Cognitive Neuroscience Matters for Ethics,” Ethics 124 (2014): 695–726. 65.  Summarized in Greene, “Beyond Point-and-Shoot Morality,” 701–5. 66.  Greene, “From Neural ‘Is’ to Moral ‘Ought,’” 847. 67.  Greene, “From Neural ‘Is’ to Moral ‘Ought,’” 848–49. See also Peter Singer, “Ethics and Intuitions,” Journal of Ethics 9 (2005): 331–52. 68. Christopher Suhler and Patricia Churchland, “The Neurobiological Basis of Morality,” in Oxford Handbook of

Neuroethics, eds. Judy Illes and Barbara J. Sahakian (Oxford: Oxford University Press, 2011). 69. Hanno Sauer, “Morally Irrelevant Factors: What’s Left of the Dual Process-Model of Moral Cognition?,” Philosophical Psychology 25, no. 6 (2012): 783–811. 70. Sauer, “Morally Irrelevant Factors”; Selim Berker, “The Normative Insignificance of Neuroscience,” Philosophy & Public Affairs 37, no. 4 (2009): 293–329; Francis Kamm, “Neuroscience and Moral Reasoning: A Note on Recent Research,” Philosophy & Public Affairs 37, no. 4 (2009): 330–35.

71.  Catriona Mackenzie, “Emotions, Reflection, and Moral Agency,” in Emotions, Imagination, and Moral Reasoning, eds. Robyn Langdon and Catriona Mackenzie (Hove: Taylor and Francis, 2011); Sauer, “Morally Irrelevant Factors.” 72. Antonio Damasio. Descartes’ Error: Emotion, Reason and the Human Brain (New York: GP Putnam’s Sons, 1994); Ronald de Sousa, The Rationality of Emotion (Cambridge, MA: MIT Press, 1987).

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CHAPTER 32

Nursing Ethics Ann Gallagher

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ursing is a moral practice, directed toward the good of individuals, families, and communities. Nurses work to prevent ill-health; to assist the recovery of people experiencing illness, disability, and mental distress; and to enable people to live as well as possible until they die. Ethical values underpin nursing practice and support the profession’s moral mission. These ethical values can be traced back to writing on nursing ethics from the nineteenth century. The values of nursing were framed, in the first instance, as virtues or character traits. Some of these may now be considered out of step with a twenty-first century profession. Virtues such as obedience and loyalty, for example, may be considered out of step with a profession wherein nurses are considered autonomous, accountable and to have moral agency. In response to the professionalization of nursing and the development of regulatory codes for nurses, there was a shift to a duty-based ethics. The shift from virtue to duty is evidenced in a focus on conduct rather than on character. Following the development of bioethics in the United States in the 1960s, nursing was influenced by bioethical frameworks such as the four principles’ approach: respect for autonomy, beneficence (do good), non-maleficence (do no harm), and justice. While this remains a popular and accessible approach to nursing ethics, the current state of the art of nursing ethics is pluralist 374

with virtues, duties, principles, and other approaches such as care ethics (also referred to as ethics of care), utilitarianism, human rights, and narrative and relational ethics co-existing. Alongside these philosophical developments, there has been an exponential rise in the number and range of publications relating to empirical ethics in nursing. The international journal Nursing Ethics, now in its twenty-eighth year, publishes articles on philosophical and empirical topics and has, in recent years, had a majority of publications reporting qualitative, quantitative and mixed-methods empirical studies. These studies report findings from research on themes such as moral distress, moral climate, moral injury, compassion fatigue, and, most recently, ethical issues that have impacted nurses during the Covid19 pandemic. Philosophical papers have developed and applied ethical theory and analyzed concepts such as dignity, compassion, courage, and integrity. The chapter provides an overview of issues that are central to nursing ethics. As nursing is necessarily a relational practice, that is, focusing on the development and management of relationships, the chapter will be structured as relationships with patients, with families, with colleagues, with organizations, with technology, and relationships with self. But before discussing these different kinds of relationships, I will give some background by considering the changing trends in ethical theory and approaches in nursing ethics.

F R OM “INTE L L I G E NT SA I NTS” TO MOR AL AG E NC Y In a nursing ethics book from 1894, Isobel Hampton Robb writes of a letter she received requesting that she recommend a head nurse for a hospital. The letter detailed the many qualities sought in a successful candidate and ended with: “In short, we require an intelligent saint.” While there is unlikely to be an expectation that contemporary nurses will be “intelligent saints,” there is much else that resonates between early and current nursing ethics.1 For example, patient-centeredness, a sense of nursing’s “ideal of service,” and the profession’s commitment to social justice.2 Recent research and scholarship in nursing ethics have engaged with a wide range of topics which can be distinguished as “normative” and “non-normative” nursing ethics. Normative—or prescriptive—nursing ethics focuses on prescriptions relating to what nurses ought to do and how they ought to be. Normative ethics focuses, then, on the development and application of theoretical perspectives that underpin ethical conduct and character. In the journal Nursing Ethics there is engagement with the many ethical values and concepts that are central to ethics, for example, autonomy, advocacy, care, compassion, dignity, harmony, integrity, justice, and solidarity. Normative ethics is philosophical in nature with activities such as philosophical analysis, theory development, and engagement with argument-based literature. Whereas normative ethics may be said to “prescribe” the moral life in nursing, non-normative, or empirical nursing ethics, “describes” ethical features of nursing practice. I turn to the former first.

N O RMATIVE NU R SI NG E T H I CS Scholarship on nursing ethics predates the “bioethical revolution” of the 1960s. Nurse ethicist Marsha Fowler writes that from the late 1800s to the 1960s some 400 articles and 50 books were published on nursing ethics:

There is a distinctive nursing ethics, but one that falls outside both biomedicine and bioethics and is larger than either. Were there a greater corpus of research on nursing’s heritage ethics it would decidedly recondition that entire argument about a distinctive nursing ethics.3 That said, nursing ethics has drawn on and contributes to scholarship on ethical theories applied to other areas of health and social professional practice. The three most commonly applied theories in Western biomedical ethics—utilitarianism, deontology, and virtue ethics—make regular appearances in nursing ethics textbooks4 and journals. Utilitarianism—consequence-based ethics—is regularly drawn on to facilitate deliberation regarding resources allocation and public health challenges. The approach involves weighing benefits and harms and selecting course of action which maximize utility (“the greatest happiness of the greatest number”). Deontology—duty-based ethics—is often applied to discussions of codes of conduct. The latter are often framed in terms of nurses’ duties or obligations with terminology of “oughts” and “should” and “musts” in relation to duties such as confidentiality, respecting dignity, and obtaining informed consent. Virtue ethics is the ethical theory that has most resonance with early nursing ethics with its focus on character which was sometimes confused with etiquette. Fowler writes: Though it has been characterised as more concerned with etiquette than with ethics, this is to misunderstand early nursing ethics. Early nursing ethics focused on the character of the moral agent, refusing to separate personal from professional behaviour. Despite being couched in language about ‘good conduct’, it was who the nurse was not what the nurse did that was important, the presumption being that good character would provide right action i.e. that virtue accomplished duty.5

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Debate, assertions and arguments regarding which virtues are most appropriate for nursing has been in progress for many decades. A 1923 text by Charlotte A. Aikens, “Studies in Ethics for Nurses,”6 for example, identified a wide range of virtues. She suggests a self-assessment with a rating score of 0 to 10 (perfect score) relating to, for example, self-reliance, fairness in judgment, honesty, tactfulness, discretion, conscientiousness, kindness, and loyalty. Writing more recently, Derek Sellman’s7 view of the good nurse includes virtues of trustworthiness, open-mindedness, and wisdom (phronesis). Other work relating to virtues in nursing refer to the importance of integrity, courage, compassion, justice, respectfulness, and care. An attractive feature of virtue ethics is that it is aspirational, that is, it accommodates our human condition as fallible and imperfect with opportunity for moral progress.8 In addition to the “big three” theories of utilitarianism, deontology, and virtue ethics, the ethics repertoire also includes rights theories. There is attention to rights in nursing ethics,9 most particularly, in relation to patients’ rights to health, to care, and to treatment, which is respectful and non-discriminatory as regards, for example, race, class, gender, sexual orientation, class, or age and to nurses’ professional rights.10 The four principles of biomedical ethics11 is one of the best-known Western approaches to ethics in relation to the health care profession. It has made significant inroads to philosophical nursing ethics also and is regularly utilized in nursing ethics education and scholarship. The principles are: respect for autonomy (prescribing information-giving, consent, confidentiality, and truthfulness); beneficence (prescribing that nurses do good and reflect on what will benefit patients, families, and communities); non-maleficence (prescribing the avoidance and minimization of harm); and justice (prescribing fairness in the allocation of resources and in relationships with patients). The four principles’ approach is a helpful framework in relation to nursing ethics;12 however, it requires careful deliberation to weigh and balance principles in response to complex everyday ethical issues in care. 376 

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Normative nursing ethics accommodates, then, a wide range of perspectives—ranging from approaches which focus on consequences (utilitarianism), on duties (deontology), on rights, on character (virtue ethics) and on principles (respect for autonomy, beneficence, non-maleficence, and justice). However, there are other philosophical approaches, which capture the caring—and often, gendered— nature of nursing practice. There is a significant and growing body of literature on an ethics of care—or care ethics13 and engagement with feminist and feminine approaches to nursing ethics.14 The literature on care ethics derives from discussions in the 1980s relating to moral psychology and the work of Kohlberg, which was critiqued by Carol Gilligan15 and many other philosophers and ethicists. The work of care ethics characterized a shift in applied ethics generally and has come to be recognized as a good fit for nursing. Key elements of care ethics include: a focus on networks of relationships (rather than on detached autonomous individuals); a focus on elements of the human condition such as vulnerability, dependence, and frailty; and a central concern with care, with caring about, with taking care of, with care-giving, and with care-receiving.16 Overall, then, the moral landscape of normative nursing ethics is diverse and continues to evolve.

EMPIRICAL NURSING ETHICS Whereas philosophical nursing ethics provides prescriptions for the ethical aspects of nursing practice, empirical ethics describes the moral terrain of nursing. A wide range of topic areas come under the umbrella of empirical nursing ethics. At the time of writing, the Covid-19 pandemic had generated much research and submissions to the journal Nursing Ethics.17 These include nurses’ experiences of the many ethical issues that emerged from pandemic restrictions and requirements, such as restricted visiting, re-deployment of nurses, shortage of personal protective equipment, and mandatory vaccinations. Methodologies in empirical nursing can be qualitative, quantitative, or mixed methods. Qualitative

studies draw, for example, on data from interviews, focus groups, and observation in response to ethics-related research questions. Qualitative data provide rich insights into lived experience of patients, family members, and nurses on topics such as ethical dilemmas in nursing practice, confidentiality, informed consent, and truth-telling in care contexts. Empirical nursing ethics can also be quantitative focusing on numerical data, which enables measurement and correlations between different validated tools. Tools most frequently utilized in nursing ethics research include, for example, questionnaire surveys to “measure” moral distress, the ethical climate of care organizations, professional values, empathy, and compassion. Empirical nursing ethics can also be mixed methods, whereby research integrates qualitative and quantitative data. The relationship between empirical nursing ethics and normative nursing ethics is complementary with insights from each perspective illuminating and interrogating the other. For example, an empirical study exploring nurses’ perspectives on compassion in care will engage with the philosophical literature relating to compassion and, perhaps, also with virtue ethics. The field of nursing ethics continues to evolve and grow and to engage with an increasing range of moral issues, theories, and recommendations for ethical nursing practice and ethics education. As nursing ethics is primarily relational, a way to categorize different sub-themes is in relation to examples from nurses’ relationships with patients, families, the institutions they work within, with emerging technologies, and with self. A different normative ethical framework will be utilized in each section to demonstrate their potential to illuminate features of the moral practice of nursing.

N U RSE S’ RE L AT I O NSH I P S W ITH PATIE NTS: CH A L L E NG E S AND OPP OR T U NI T I E S In 1955 psychologist Gordon Allport wrote: “Each person is like every other person, like some other people, like no other person. Each of us contains within

us both general patterns and the particular, that which is peculiar to me and my context.”18 Nurses engaged in ethical practice appreciate—and respond to—the individuality and uniqueness of care-recipients they work with. They also appreciate the “general patterns” and features of humans that render people vulnerable in care contexts. Moral “seeing” and sensitivity to the predicament of people on the receiving end of care are pre-requisites for good care. So also is the awareness that care-recipients do not always want what nurses consider they need. Nor do nurses always believe that care-recipients need what they consider they want. In responding to what might be considered ‘the swampy lowlands’ of nursing and other care practices, the author has recommended “slow ethics.”19 Perceived crises in care often bring forth moral panic and “fast responses.” In response to reflection on knee-jerk, short-term, fast ethical responses, the author developed scholarship on “slow ethics.” Consideration of the features of slow ethics such as ethical sensitivity, scholarship, solidarity, and considerations of relational sustainability have been recommended in response to the complexity of everyday care. So, too, engagement with patient stories enables nurses to develop a better understanding and to deepen professional relationships, which are mutually rewarding. There is an important role for stories also in nursing ethics education. Arthur Frank, for example, writes, that: Stories work with people, for people, and always stories work on people, affecting what people see as real, as possible, as worth doing or best avoided.20 Nursing is necessarily a relational practice and the quality of relationships nurses have with patients— and others—is central to the ethics of their practice. Ensuring that patients have the information they need to make informed choices, to support these choices and to be alongside people as they negotiate physical and mental health challenges, are important elements of nursing practice. So too acting as advocate or ally, representing patients’ interests—when patients are N u r sin g E thics 

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unable to represent their own views—requires collaboration, creativity, ethical sensitivity, and virtues such as patience, kindness, trustworthiness, integrity, and practice wisdom (prudence). I turn next to nurses’ relationships with families.

N U RSE S’ RE L AT I O NSH I P S W ITH FAMILI E S: NE G OT I AT I NG D ISAGRE E MENTS For the most part, relationships with the families of care-recipients will be harmonious and decisions will be in accord with the wishes of all. However, it is sometimes the case that conflict arises when families disagree with decisions relating to the care or treatment of a patient. As patient advocates, nurses play an important role in communicating with patients and families and in providing information that assists with decision-making. This becomes more challenging when patients lack capacity, for example, when a person has dementia or is unconscious or too young to process information and to express their views verbally. Some of the cases where disagreements have arisen become high profile due to the involvement of the law and media. Cases such as, for example, that of the family of seriously ill infant Charlie Gard,21 highlighted how disagreements can arise and the adverse consequences for all concerned, including nurses. Charlie’s parents planned to pursue experimental treatment in the United States for a rare genetic degenerative condition identified as infantile encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). The pediatric team concluded that this was not in Charlie’s best interests. Nurses and other members of the health care team were on the receiving end of much criticism and negative social media attention. At the time, they had resources to draw on such as their codes and also frameworks such as the four principles’ approach. There is also specific guidance which provide pointers which enable reflection in relation to negotiating disagreements with family members of patients.22

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N U R S E S’ R E L AT I O N S H I P S WI T H O R G A N I Z AT I O N S: FR O M I N DI V I DUA L S TO C U LT U R E S O F C A R E The relationship between the behavior of individual nurses and organizational culture has received muchneeded attention over the past decade in particular. Reports of serious deficits in care, for example, the Mid-Staffordshire Hospital Inquiry,23 which resulted in many patient deaths, have focused attention on the ethical climate of care organizations. The report highlighted the adverse consequences of a culture which focused on organizational ambition over values prioritizing patient care. There has been a shift then, post-Francis, from pinning responsibility solely on the shoulders of individual care-givers, such as nurses, to an appreciation of the importance of organizational leadership and culture. It is not, of course, either/or. Nursing ethics requires engagement with individuals, taking seriously their moral agency, and with organizational culture and leadership. It is critical to learn from reports of suboptimal care with a view to preventing its recurrent.

N U R S E S’ R E L AT I O N S H I P S WI T H E M E R G I N G T E C H N O LO G I E S: Q U I C K FI X E S V E R S U S A S LOW A N D S U S TA I N A B L E A P P R OAC H There is a global shortage of nurses24 and nursing organizations are focusing on strategies to recruit and retain nurses and to develop interventions to fill gaps. The development of robots (carebots) has received much media and scholarship attention.25 However, other technologies have come to the fore during the Covid-19 pandemic. That is, those which have enabled communication between care-recipients and families, for example, using mobile phones or iPads. There have also been exciting developments where artificial intelligence has been utilized to supplement human decision-making in areas such as diagnoses, treatment and even nurse regulation. The benefits of

such technologies include contributions to independence and autonomy of care-recipients and potential risks or disadvantages might include threats to privacy and dignity from the surveillance functions of care-related technologies.

N U RSE S’ RE L AT I O NSH I P W I T H TH EMSE LVE S: A N E T H I C A L IM P E R ATIVE TO SE L F - C A R E Nursing is necessarily an other-regarding practice and has, as highlighted earlier, a service ideal and commitment to social justice. To care well for others, however, nurses need to take care of themselves. They need also, then, to be self-regarding to a certain extent. Research on moral distress and moral injury has drawn attention to nurses’ experience, particularly when working in difficult circumstances such as the pandemic. Such experiences can undermine nurses’ ability to deliver compassionate care and lead to, in some instances, their leaving the profession. There is, therefore, an imperative for nurse education programs to include input on selfcare and strategies to increase resilience—physical, emotional, and moral—and for health and social care organizations to attend to nurses’ well-being in everyday practice. Self-care strategies are necessary so that nurses can respond effectively and ethically to suffering, mental distress and the ethical challenges and develop and sustain their commitment to the values underpinning their practice.

CO NCLUSION Nursing ethics is not a new phenomenon and the scope of the discipline is broad and deep. A significant body of literature has been in existence since the nineteenth century and this continues to grow exponentially. Scholarship and research on nursing ethics falls into two main categories: philosophical and empirical. Normative nursing ethics includes the development and application of ethical theory which illuminates ethical issues in nursing practice and

facilitates nurses’ deliberation and decision-making. Empirical nursing ethics includes qualitative, quantitative, and mixed-methods research, which enables nurses to better appreciate the lived experience of patients, families, and colleagues and to evaluate the impact of nursing and educational interventions. Nursing ethics encompasses scholarship and research that contributes to the flourishing of individuals, families, and communities. It prescribes and guides nurses regarding right conduct and good character. Philosophical activity in nursing ethics continues with ongoing development of ethical theories and clarification of ethical concepts. Nurse ethicists and educators draw on a range of approaches, some more specific to care practices such as care ethics and others which are applied more broadly to biomedicine such as the four principles’ approach. Nursing ethics illuminates the moral life in care, describing ethical features of nursing practice, and enabling nurses and others to better appreciate the experiences and impact of nursing practice. Nursing ethics straddles a wide range of contexts as care is delivered in hospital, hospice, home, and conflict zones. Nursing is a moral practice which contributes to human flourishing. It is an art and a science and is necessarily interdisciplinary and intercultural. Nursing ethics attends to human dignity and to experiences of vulnerability, suffering and joy. Nursing ethics continues to evolve in response to local and global demographic, health inequalities, and environmental challenges. Nursing ethics engages with people across the life span—from birth to death—and is integral to the overall aims of nursing practice: to promote health, to aid recovery and to enable people to have the best end of life experience possible.

N OT E S 1.  A. Gallagher, “Progress in Nursing Ethics: Something Old, Something New . . .,” in Cultivating Moral Character and Virtue in Professional Practice, ed. D. Carr (London: Routledge, 2018). 2. M. Fowler, “Heritage Ethics: Towards a Thicker Account of Nursing Ethics,” Nursing Ethics 23, no. 1 (2016): 7–21. N u r sin g E thics 

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3.  Ibid., 7. 4.  P. A. Scott, Key Concepts and Issues in Nursing Ethics (Springer, 2017). 5.  Fowler, “Heritage Ethics,” 19. 6.  C. A. Aikens, Studies in Ethics for Nursing (Philadelphia, PA: W.B. Saunders, 1923). 7.  D. Sellman, What Makes a Good Nurse (Jessica Kingsley Publishers, 2011). 8.  S. Banks and A. Gallagher, Ethics in Professional Life: Virtues for Health and Social Care (Basingstoke: Palgrave MacMillan, 2009). 9.  J. McHale and A. Gallagher, Human Rights and Nursing (Edinburgh: Butterworth Heinemann/Elsevier, 2003). 10.  M. Khademi, A. Mohammadi and Z. Vanaki, “On the Violation of Hospitalized Patients’ Rights: A Qualitative Study,” Nursing Ethics 26, no. 2 (2017): 579–86; M. Kangasniemi, A. Stievano, and A. Pietila, “Nurses’ Perceptions of Their Professional Rights,” Nursing Ethics 20, no. 4 (2013): 459–69. 11.  T. L. Beauchamp and J. F. Childress, Principles of Biomedical Ethics, 7th ed. (Oxford: Oxford University Press, 2013). 12. S. Edwards, Nursing Ethics: A Principle-Based Approach, 2nd ed. (London: Palgrave MacMillan, 2009). 13.  A. Gallagher, “Care Ethics and Nursing Practice,” in Key Concepts and Issues in Nursing Ethics, ed. P. A. Scott (Springer, 2017); A. Gallagher, “Progress in Nursing Ethics.” 14.  H. Kohlen and J. McCarthy, Nursing Ethics: Feminist Perspectives (Springer, 2020).

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15.  C. Gilligan, In a Different Voice: Psychological Theory & Women’s Development (Cambridge: Harvard University Press, 1982). 16.  J. C. Tronto, Moral Boundaries: A Political Argument for an Ethic of Care (London: Routledge, 1993). 17.  Nursing Ethics, https://journals.sagepub.com/ac tion/doSearch?filterOption=thisJournal&SeriesKey=neja &AllField=COVID. 18.  G. W. Allport, Becoming: Basic Considerations for a Psychology of Personality (New Haven: Yale University Press, 1955). 19.  A. Gallagher, Slow Ethics and the Art of Care (UK: Emerald Publishing, 2020). 20. A. Frank, Letting Stories Breathe: A Socio-narratology (Chicago: University of Chicago Press, 2010). 21.  BBC, “Charlie Gard: The Story of His Parents’ Legal Fight,” July 27, 2017, https://www.bbc.co.uk/news/ health-40554462, accessed February 7, 2022. 22.  Nuffield Council on Bioethics, Disagreements in the Care of Critically Ill Children—Policy Briefing, 2019. 23.  R. Francis, “The Mid Staffordshire NHS Foundation Trust Public Inquiry 2013,” https://assets.publishing. service.gov.uk/government/uploads/system/uploads/ attachment_data/file/279124/0947.pdf. 24.  World Health Organization, The State of the World’s Nursing Report, https://www.who.int/publications/i/ item/9789240003279, accessed 7th February 2022. 25. Ibid.

CHAPTER 33

Climate Change Trevor Hedberg

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he emission of carbon dioxide, methane, nitrous oxide, and various other gases is having a profound impact on the Earth’s climate system. These greenhouse gases have led to an increase in Earth’s average temperature by about 1°C since the industrial revolution. Between 1880 and 2012, the average global surface temperature increased about 0.85°C.1 This increase may not sound significant, but it is already having a profound impact around the world. Sea levels are rising, extreme weather events (e.g., hurricanes, floods, droughts) are occurring more frequently, and the livable range of disease-carrying insects is expanding. Animals that are sensitive to temperature must migrate greater distances (or to greater heights) to survive, and may perish if they are unable to do so. Arid regions are experiencing a decrease in farmable land, which can lead to regional food shortages, and ocean acidification is reducing the food productivity of the world’s oceans. Recent reports from the Intergovernmental Panel on Climate Change showcase these impacts and many more.2 How morally significant are the effects of climate change? One powerful way to understand the severity of its impacts is to consider how many people will die as a result of this global phenomenon.3 Various estimates suggest that climate change is already claiming hundreds of thousands of human lives every year.4

The World Health Organization estimates that the annual death toll from climate change in 2030–2050 will be at least 250,000, and this estimate does not account for economic damages, flooding, heatwaves, water scarcity, and various other means by which human health could be affected.5 A starker estimate comes from Marco Springmann and his colleagues: they suggest that climate change is already responsible for 529,000 annual deaths due to its impacts on agriculture and food security.6 Even if the more conservative of these estimates proves correct, there will still be tens of millions of deaths attributable to climate change by the end of the twenty-first century. We must also consider the fact that these numbers vastly understate how many will actually be victims of climate change. Most will not die from its effects but will still suffer severely from dehydration, malnourishment, and illness. The warming caused by climate change will not be limited to this century either: notwithstanding extraordinary feats of geoengineering the atmosphere, the temperature increase may persist for tens of thousands of years.7 The effects of climate change are not limited to human beings, however. Climate change alters the natural environment and affects the welfare of nonhuman organisms. Perhaps the most notable impact on the nonhuman world is that climate change increases the rate of species extinctions.8 As ocean and surface

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temperatures rise, species are often unable to survive in their original ecological niches. If they are not able to migrate toward the poles or to high elevations quickly enough, they may face extinction. The loss of nonhuman species may result in the loss of valuable benefits to humans such as knowledge, beauty, and ecosystem services (i.e., natural processes that produce goods in cheaper or more effective ways than they could be created artificially), but it also results in the death and suffering of countless nonhuman creatures, at least some of whom have moral value of their own. It should be obvious from this short overview that climate change represents one of the greatest moral challenges that humanity must confront this century. Reducing its effects on people and the planet is of paramount importance. But determining what people should do—both in the political domain and as individuals ensnared in carbon-intensive lifestyles— is not a simple matter. In this chapter, I examine some of the major moral dimensions of climate change and consider what ought to be done in response to it.

CO LLE C TIVE R E SP O NSE S TO CLIMATE CH A NG E Given that climate change will cause severe suffering and death on a global scale and that its effects on the atmosphere will be long-lasting, it is clear that any adequate response to it will require substantial international cooperation. This state of affairs gives rise to a myriad of questions in the domain of “climate justice”9—questions about what political arrangement satisfies the moral duties associated with responding to climate change. I focus on two of the biggest questions in this area. First, what should be done in response to climate change? Second, who should bear responsibility for responding to climate change? I will consider these in turn. There are three broad strategies for responding to climate change: mitigation, adaptation, and compensation. Mitigation refers to lessening the extent to which the planet warms. Typically, this is

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accomplished by either reducing the emission of greenhouse gases or by creating additional greenhouse gas sinks that absorb these gases from the atmosphere. (A common example of the latter is planting trees.) Adaptation refers to making a change to people’s environments so that they are better able to cope with the effects of climate change. To offer a couple illustrations, these measures could include developing heat-resistant crops to minimize climate change’s effects on agriculture or building sea walls to guard against storm surges during severe weather events. Compensation refers to providing some sort of restitution to those whose lives are adversely affected (e.g., because their basic rights are violated) by preventable impacts of climate change. Compensation could, in theory, be offered in many different mediums, but in practice, it would most likely take the form of a monetary sum distributed to victims. One complication in this regard is that whether a specific event, such as a drought or severe storm, was caused by climate change cannot always be determined, which makes it difficult to identify when someone is a victim of climate change. Mitigation is generally viewed as the most effective response since it prevents the impacts of climate change from occurring in the first place. The Paris Agreement, which 196 countries agreed to in 2015, specifies the mitigation target as “holding the increase in the global average temperature to well below 2°C above pre-industrial levels and pursuing efforts to limit the temperature increase to 1.5°C above pre-industrial levels.”10 Meeting this target will require a dramatic reduction in global greenhouse gas emissions over the next several decades. Nevertheless, we should not expect all nations to prioritize mitigation in every policy decision. Some nations, for example, have such low emission levels that it would be unreasonable to demand that they lower their emissions further. Others may find that investing in adaptation measures is more appropriate because they are in a vulnerable geographical region (e.g., countries with a large, densely populated coastline) or because it is more economically feasible. Moreover, some climate impacts may prove unavoidable at this stage

regardless of how aggressive our future mitigation and adaptation efforts are. One significant concern in this regard is the plight of low-lying island nations.11 Countries like Tuvalu and Vanuatu are in danger of becoming uninhabitable in the future due to sea level rise. Suppose that adaptation and mitigation measures ultimately fail to prevent this from happening. Under those circumstances (and especially given that these nations have extremely low greenhouse gas emissions), the citizens who have to abandon these islands would surely deserve some form of compensation. For these reasons, while mitigation should be the primary response to climate change, adaptation and compensation measures must also be pursued. The most common mitigation strategy involves reforming our current means of producing energy: we must reduce our energy consumption and, where that is not possible, replace fossil fuel technologies with renewable energy forms that do not emit greenhouse gases. However, given how many people may be harmed by climate change and the difficulty associated with reaching the desired mitigation target, some have begun to consider the possibility of geoengineering the atmosphere.12 In this context, geoengineering refers to intentionally manipulating the climate system to lower the extent to which the Earth warms. The most widely discussed proposal, known as solar radiation management (SRM), is the injection of sulfate aerosols into the atmosphere to increase the atmosphere’s reflectivity, which would redirect a greater degree of sunlight back into space and away from Earth’s surface. SRM could be initiated without much international collaboration and deployed over a vast part of the globe rather swiftly. The possibility of a rogue nation acting alone to initiate SRM has caused some scientists to advocate for further research on it so that its effects are better understood and norms for governance of SRM can be established.13 Geoengineering raises some significant ethical concerns, however. First, geoengineering may have unintended side effects. SRM could, for instance, affect the monsoon season in India and thereby affect the welfare of hundreds of millions of people.14 Second, geoengineering would not address

all the effects of climate change. Unlike mitigation, some geoengineering proposals (including SRM) do not address ocean acidification.15 There is also a concern that geoengineering research presents a moral hazard.16 By pursuing geoengineering research, we may incentivize nations not to make the social and economic changes necessary to properly mitigate climate change because they will view geoengineering the atmosphere as an acceptable failsafe if mitigation efforts fall short. Finally, geoengineering may be viewed as a “marring evil”—an activity that, even if it were justified at the time it was initiated, would diminish the overall quality of the life of someone who must undertake it.17 It may be morally wrong to put future people in a position where the best course of action they can take involves geoengineering the atmosphere. Of course, even with these concerns noted, geoengineering may become a more appealing strategy if conventional mitigation efforts progress too slowly. Another potential mitigation strategy that has recently emerged involves slowing down global population growth. Population growth has been one of the primary forces behind rising GHG emissions.18 Thus, one potential way to decrease emissions—or at least make it easier for other mitigation measures to result in meaningful emissions reductions—is to halt population growth or reduce population in nations where that is possible. Moreover, reducing population growth is among the cheapest and most effective mitigation measures available.19 This observation, often in conjunction with population’s connection to other environmental impacts, has led many authors to argue in favor of various policy measures that would reduce population growth.20 Population policies often raise concern because of their association with coercive measures such as forced abortions and involuntary sterilization, but the policies that most ethicists promote are not coercive. Rather, they are autonomy-enhancing measures such as increasing access to contraception, improving educational opportunities for women, and improving environmental education. Whether more coercive measures, such as fines for having more than an allotted number of biological

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children,21 are justified will depend in large part on how severe one judges the problem of overpopulation to be. Perhaps the bigger concern about discussions of population is that they redirect people’s attention toward the high fertility rates in the developing world rather than focusing on the carbon-intensive lifestyles of those in the developed world.22 This brings us to another crucial question related to climate justice: Who should take primary responsibility for mitigating climate change, adapting vulnerable populations to climate change, and compensating the victims of climate change? Three prominent moral principles have emerged in discussions of this question:23 1. Polluter Pays: the burdens of responding to climate change should be allocated proportionally according to how much each contributor has emitted;24 2. Beneficiary Pays: the burdens of responding to climate change should be borne by those who have benefited from or are benefiting from greenhouse gas emissions;25 3. Ability to Pay: the burdens of responding to climate change should be borne by those who have the ability to bear the costs of mitigation and adaptation.26 The polluter pays principle is perhaps the most intuitive since it parallels how we typically regard duties to correct wrongdoing. If I do something wrong, then I am the one who should perform whatever action rectifies the situation. It is precisely this reasoning that Tuvalu and Antigua and Barbuda appealed to at the COP26 Climate Conference when they sought compensation for the impacts of climate change from the wealthiest, highest-emitting nations.27 Unfortunately, the application of Polluter Pays is not as straightforward as it appears. Historically, a mere ten countries account for roughly 60 percent of all greenhouse gas emissions, and the 100 lowest historical emitters have contributed only about 3 percent combined.28 Thus, one would think that these emitters should take on rather robust duties of mitigation

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and adaptation. However, many of the historical emitters are dead, and for much of the period where emissions were occurring, these individuals were excusably ignorant about climate change and its impacts. Moreover, those in the poorest nations in the world may not be able to reduce their emissions without reducing their standard of living below an acceptable level, so they might need to be exempted from a strict application of the Polluter Pays principle. These concerns suggest that Polluter Pays needs to be augmented by some additional moral considerations. The Beneficiary Pays principle suggests that we first look at who benefits from greenhouse gas emissions. The answer here is pretty straightforward: the nations who benefit most are the richest nations— those that have obtained high levels of affluence in large part due to their carbon-based economies. Thus, those nations are the ones who should take on the task of mitigating climate change, adapting vulnerable populations, and compensating victims. The Ability to Pay principle suggests that an agent should be expected to pay a higher proportion of a cost as their ability to pay that cost rises. Again, this has a straightforward implication for climate change: the nations with the greatest ability to pay are going to be the world’s wealthiest nations because they have more resources to invest in mitigation, adaptation, and compensation. Beneficiary Pays and Ability to Pay are not without their faults as moral principles. Beneficiary Pays may connect benefiting from an activity too tightly with being obligated to pay costs associated with that activity, and Ability to Pay divorces the obligation to pay costs from the causal origin of those costs. Even so, these principles and Polluter Pays all converge on the same conclusion: the world’s wealthiest nations ought to bear most of the responsibility for responding to climate change. These nations have historically contributed (by far) the most to causing the problem, they benefit the most from the problem, and they are the ones most able to devote the resources necessary to solve the problem. Taken together, these three independent considerations make a very strong case in tandem that the primary

moral responsibility for pursuing mitigation, adaptation, and compensation measures lies with the affluent nations of the developed world.

C L IMATE CHA NG E A ND IN DIVIDUAL O B L I G AT I O NS While a robust collective response to climate change will be required if disastrous long-term consequences are to be avoided, there remain intriguing ethical questions for individuals. So many daily activities— traveling, cooking, reading, watching television, and so on—are connected to the burning of fossil fuels. Billions of people around the world emit more greenhouse gases than they need to ensure their survival. Given the effects associated with greenhouse gas emissions, a moral question emerges: To what extent are individuals obligated to reduce their greenhouse gas emissions? Philosophers appear rather divided in how they answer this question. Some have argued that there is no obligation for people to try to reduce their individual greenhouse gas emissions.29 Perhaps the most prominent line of reasoning offered to support this position stems from the notion that an individual’s greenhouse gas emissions do not cause harm. Greenhouse gas emissions only cause harm when joined with a tremendous amount of other greenhouse gas emissions, and an individual’s specific emissions may not be causally connected to any particular negative effect of climate change. It could be, for example, that the carbon emissions tied to my recent automobile use happen to be entirely absorbed by a carbon sink. These factors lead some philosophers to conclude that no climate-related harms have the right kind of causal connection to a specific individual’s greenhouse gas emissions for us to say that the individual harmed someone else through their emissions.30 Thus, even though climate change unquestionably does cause harm, no single individual can be held responsible for it. As a result, there is nothing wrong with an individual choosing to emit greenhouse gases, even if they do so unnecessarily.

The central claim of the preceding argument— the idea that an individual’s greenhouse gas emissions do not cause harm—has not gone uncontested. Drawing on various data on greenhouse gas emissions, John Nolt suggests that the lifetime emissions of the average American citizen are responsible for the death or severe suffering of one to two future people.31 In a similar fashion, John Broome argues that a person’s lifetime greenhouse gas emissions typically result in the loss of more than six months of human life.32 Many others have also challenged this claim in various ways,33 but people’s intuitions about the nature of harm differ enough that a consensus on this matter has proven elusive. The lack of consensus about whether an individual’s greenhouse gas emissions cause harm has led some philosophers to seek other ways of explaining why frivolous emitting is wrong. Travis Rieder suggests that emitting greenhouse gases unnecessarily violates a duty not to contribute to massive systematic harms—“a duty not to inject oneself as an active contributor into the large, causally complex machine that is doing the harm.”34 Climate change can be considered a massive systematic harm, so choosing to support it unnecessarily violates this duty. This principle reflects a deontological commitment to (at least when reasonably possible) maintain clean hands and avoid participating in activities that lead to immoral outcomes. However, this reasoning is unlikely to persuade consequentialists—those who think that right and wrong actions are determined entirely by their outcomes. They might reason that an individual’s greenhouse gas emissions make no difference to the overall state of the world.35 Perhaps those greenhouse gases would have just been emitted by someone else, or perhaps the tiny amount of extra carbon added to the atmosphere has no discernable effect on the severity of climate change. If an individual’s emissions do not lead to any negative outcome, then consequentialists will not regard that act of emitting as wrong. Some authors, in an effort to avoid the difficulties described before, have turned to the virtue of integrity to explain what might be wrong with an individual’s excessive greenhouse gas emissions.36

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Integrity is considered a praiseworthy character trait, and having integrity means possessing a special type of unity between one’s values, thoughts, and actions. There are compelling moral reasons for individuals to regard climate change as an important moral cause and to support political solutions to it. One might reason that having integrity thus requires that one take basic actions in their personal life to reduce their emissions such that this value is properly represented in both the personal and political spheres of their existence. Of course, some may object that a person who supports political action in response to climate change would be justified in not focusing on personal actions that will make no difference toward solving the problem in the political arena (which is the only context in which a lasting solution to climate change can emerge). There is much yet to be resolved regarding whether one is obligated to reduce their unnecessary greenhouse gas emissions and, if so, how strenuous this duty is. Notably, however, much like some authors have connected population growth to climate change in the realm of mitigation policy, some philosophers have argued that a duty to reduce greenhouse gas emissions entails a duty to limit one’s family size.37 Since children typically adopt the lifestyle of their parents and are likely to procreate themselves, prospective parents’ decisions about how many biological children to have are likely to be the most significant decisions of their lives with regard to their carbon footprint. According to one estimate, for those who live in the developed world, choosing to have one fewer child is twenty-four times more effective at reducing your carbon footprint than choosing to live without a car.38 If anything remotely close to this estimate is correct, then the debate about whether individuals have duties to reduce their carbon footprints may have some significant implications for the ethics of procreation.

TH E N ON-IDENT I T Y P R O B L E M Despite my prior remarks, there is a recurring source of skepticism about the severity of climate impacts 386 

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that warrants a response. Sometimes, actions that we take in the present affect the identity of people who will exist in the future. A person’s genes form an essential aspect of their identity, so changes to the time conception occurs will lead to an entirely different person being born. Imagine that two prospective parents wait a few weeks before attempting to conceive a child. If their attempt is successful, this short wait will result in a different sperm and egg pair uniting, which means the resulting child will have a completely different genetic makeup than the child who would have been conceived weeks earlier. This observation could have significant implications for intergenerational ethics when paired with a common intuition about harm. According to the counterfactual comparative account of harm, a person can only be harmed if they have been made worse off than they otherwise would have been. If you are assaulted, you can claim the assaulter harmed you because they have made you worse off than you would otherwise be: if that person had not assaulted you, then you would have avoided significant pain and discomfort. When we connect our observations about genetics and identity with the counterfactual comparative account of harm, a moral puzzle emerges involving certain kinds of moral decisions. Consider this example from Derek Parfit: As a community, we must choose whether to deplete or conserve certain kinds of resources. If we choose Depletion the quality of life over the next two centuries would be slightly higher than it would have been if we had chosen Conservation. But it would later, for many centuries, be much lower than it would have been if we had chosen Conservation. . . . Suppose that we choose Depletion. Is our choice worse for anyone?39 Those who reflect on this case will often think that there is something wrong with depleting the welfare of future people so significantly for so long, but if we were to adopt a policy of Conservation, the social change involved would cause different people to

meet and for people to be conceived at different times than they would be if we choose Depletion. Hence, a completely different set of people would exist in the future where Conservation is chosen. As a result, the people living in the Depletion scenario cannot claim to have been harmed by the previous generations who chose to deplete their natural resources. Parfit’s thought experiment bears some important parallels to policies we might take in response to climate change—they will unquestionably involve massive social changes if they are to be effective, and these will cause different people to be born compared to scenarios where we do not pursue them. Thus, people impacted by climate change in the future may not be able to claim they were harmed by climate change because they would not have existed in a world where climate impacts were lessened. How do we understand the “harm” that befalls future people in this context? The philosophical conundrum I have sketched is known as the Non-identity Problem, and it emerged as a topic of concern in intergenerational ethics about forty years ago.40 Responses to the Non-identity Problem are quite varied. The most straightforward response (and the one I am most prone to accept)41 is to reject the counterfactual comparative account of harm. One reaction to Parfit’s thought experiment is to conclude that the counterfactual comparative account of harm paints an incomplete picture of the circumstances in which people can be harmed. Perhaps people can be harmed if an action causes them to fall below a certain threshold of personal welfare even if they are not made worse off than they otherwise would have been.42 An alternative response is to concede that no harm has been done but argue that these kinds of identity-affecting actions are wrong nevertheless. Perhaps these actions constitute rights violations,43 or perhaps they express vicious character traits that we should not cultivate in ourselves.44 This is far from an exhaustive list of responses,45 and it is worth stressing that very few philosophers have accepted the conclusion of the Non-identity Problem. (David Boonin is perhaps the most notable exception.)46

The counterintuitive assessment of these non-identity scenarios may partially explain why they have had little influence in affecting how policy-makers, scientists, and ethicists typically think about the moral impact of climate change. Most have a resolute conviction that there is something deeply wrong with degrading the planet and lowering future people’s quality of life even if this affects the identities of those who will exist in the future. One reason is that the impact of climate change will be so severe that some future people may have lives not worth living (i.e., lives with a negative welfare value). Individuals in these circumstances might argue that it would have been better for them not to be born so that they could have avoided this severe suffering. Another consideration is that the Non-identity Problem only pertains to outcomes in the distant future, and climate change is already having an impact on existing people. Thus, despite its prevalence in the literature on intergenerational ethics, the Non-identity Problem does little to diminish our moral obligations connected to climate change.

CO N C LU S I O N There is a robust consensus among philosophers, scientists, and policy-makers that climate change poses a serious threat to human welfare in both the short- and long-term. Nevertheless, there remain complex moral questions about what collective response to climate change ought to be pursued and the extent to which individuals have obligations to reduce their personal greenhouse gas emissions. Several arguments do converge on the conclusion that the wealthiest nations in the world should be the ones to shoulder the largest burdens of mitigation, adaptation, and compensation, but how mitigation, adaptation, and compensation should be prioritized remains a complex matter. Moreover, whether the richest nations will live up to their responsibilities remains uncertain. The moral acceptability of geoengineering schemes remains undetermined, but discussions about the viability and moral permissibility of

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geoengineering are likely to become more serious as the climate problem intensifies later this century. There should be less controversy about the permissibility of policies that promote population reduction in non-coercive ways, but the emerging literature on the connection between population growth and climate change is not yet as extensive as most other areas of the climate change literature. Whether more coercive strategies for reducing population are morally justified and how such policies compare to other responses to climate change in terms of political feasibility and cost effectiveness both remain matters of significant controversy. Additionally, compared to the literature tying climate change to political philosophy and individual moral obligations, the literature connecting climate change to animal welfare and the moral significance of the natural world more broadly is underdeveloped. The overwhelming majority of the climate change literature is anthropocentric: it focuses only on human values and interests. But few ethicists today think that the moral community is inhabited exclusively by human beings. Thus, incorporating the interests of nonhuman animals and the moral value of the natural world into our discussions of what to do about climate change should be a moral priority. It is, of course, a controversial matter exactly what nonhuman organisms should be included in the moral community and how they should count relative to human beings, but that does not justify neglecting the important moral questions in this domain. While there have been some promising steps in this direction,47 more work remains to be done. By way of closing, there is one unsettling fact about climate change that may not yet have been fully appreciated by philosophers or policy-makers: the window for responding adequately to climate change is rapidly closing. To have a reasonable chance of remaining below a 2°C rise in average global temperature (compared to pre-industrial levels), global emissions must decline from 2010 levels by 40–70 percent by 2050 and decrease to nearly 0 by 2100.48 One roadmap for meeting the 2°C target projects that global emissions be halved by 2030, halved again by 2040, and halved again by 2050; in addition to making these 388 

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strides by 2050, we must also develop carbon capture technology that can remove 5 gigatons from the atmosphere annually.49 To say that this is a daunting task would be a gratuitous understatement, and attendees of the recent COP26 Climate Conference in Glasgow acknowledged that present climate plans are not ambitious enough to meet the targets for emissions reductions within the timeframe we have available.50 If we are not able to drastically curb emissions, we may cross the 2°C threshold within a few decades— perhaps as early as 2036.51 Given the challenge of mitigating climate change and the near certainty that the harms tied to climate change will continue to escalate for some time yet, there may be hundreds of millions of victims of climate change this century. Thus, additional work on how to properly identify and compensate victims of climate change is needed. Further work on the proper response to noncompliance with agreed-upon mitigation targets must also be undertaken since it is doubtful all nations will adhere to the standards established in international agreements. The path to a long-term solution to climate change will not be a smooth one, and so it is paramount that we consider what ought to be done under the nonideal moral conditions that await in the future.

N OT E S 1. IPCC, “Summary for Policy Makers,” in Climate Change 2014 Synthesis Report. Contribution of Working Groups I, II and III to the Fifth Assessment Report of the Intergovernmental Panel on Climate Change, eds. Core Writing Team, Rajendra Pachauri, and Leo Meyer (Geneva: IPCC, 2014), 2. https://www.ipcc.ch/report/ar5/syr/. 2. IPCC, Climate Change 2014: Impacts, Adaptation, and Vulnerability, eds. Christopher Field et al. (Cambridge: Cambridge University Press, 2014); O. Hoegh-Guldberg et al., “Impacts of 1.5ºC Global Warming on Natural and Human Systems,” in Global Warming of 1.5°C. An IPCC Special Report on the Impacts of Global Warming of 1.5°C above Pre-industrial Levels and Related Global Greenhouse Gas Emission Pathways, in the Context of Strengthening the Global Response to the Threat of Climate Change, Sustainable Development, and Efforts to Eradicate Poverty, eds. V. Masson-Delmotte et al., (Cambridge: Cambridge University Press, 2022), 175–312. https://doi.org/10.1017/9781009157940.005. 3.  John Nolt, “Casualties as a Moral Measure of Climate Change,” Climatic Change 130, no. 3 (2015): 347–58.

4. World Health Organization, Climate and Health: Fact Sheet, July 2005. www.who.int/globalchange/news /fsclimandhealth/en/index.html; World Health Organization, Global Health Risks: Mortality and Burdens of Disease Attributable to Selected Major Risks (Geneva: WHO Press, 2009), https://www.who.int/publications/i/item /9789241563871; Global Humanitarian Forum, Climate Change: The Anatomy of a Silent Crisis (Geneva: Global Humanitarian Forum, 2009). 5.  World Health Organization, Quantitative Risk Assessment of the Effects of Climate Change on Selected Causes of Death (Geneva: WHO Press, 2014), https://www.who.int /publications/i/item/9789241507691. 6.  Marco Springmann et al., “Global and Regional Health Effects of Future Food Production Under Climate Change: A Modelling Study,” The Lancet 387, no. 10031 (2016): 1937–46. 7.  David Archer et al., “Atmospheric Lifetime of Fossil Fuel Carbon Dioxide,” Annual Review of Earth and Planetary Sciences 37 (2009): 117–34, https://doi.org/10.1146 /annurev.earth.031208.100206; Richard Zeebe, “TimeDependent Climate Sensitivity and the Legacy of Anthropogenic Greenhouse Gas Emissions,” Proceedings of the National Academy of Sciences of the United States of America 110, no. 34 (2013): 13739–44. 8.  Chris Thomas et al., “Extinction Risk from Climate Change,” Nature 427, no. 6970 (2004): 145–48; Abigail Cahill et al., “How Does Climate Change Cause Extinction?,” Proceedings of the Royal Society B 280 (2013): 20121890, https://doi .org/10.1098/rspb.2012.1890; Cristian Román-Palacios and John Wiens, “Recent Responses to Climate Change Reveal the Drivers of Species Extinction and Survival,” Proceedings of the National Academy of Sciences 117, no. 8 (2020): 4211–17. 9.  Simon Caney, “Climate Justice,” Stanford Encyclopedia of Philosophy (Stanford: Stanford University, 2020). 10.  United Nations Framework Convention on Climate Change, “Paris Agreement” (Paris: United Nations, 2015), https://unfccc.int/sites/default/files/english_paris _agreement.pdf. 11.  Mathias Risse, “The Right to Relocation: Disappearing Island Nations and Common Ownership of the Earth,” Ethics and International Affairs 23, no. 3 (2009): 281–300; Sujatha Byravan and Sudhir Chella Rajan, “The Ethical Implications of Sea-Level Rise Due to Climate Change,” Ethics and International Affairs 24, no. 3 (2010): 239–60; Avery Kolers, “Floating Provisos and Sinking Islands,” Journal of Applied Philosophy 29, no. 4 (2012): 333–43. 12.  David Keith, “Geoengineering the Climate: History and Prospect,” Annual Review of Energy and the Environment 25 (2000): 285–94; Paul Crutzen, “Albedo Enhancement by Stratospheric Sulfur Injections: A Contribution to Resolve a Policy Dilemma,” Climatic Change 77, no. 3–4 (2006): 211–19; James Fleming, “The Climate Engineers,” The Wilson Quarterly 31, no. 2 (2007): 46–60; Damon Matthews and Ken Caldeira, “Transient Climate—Carbon Simulations of Planetary

Geoengineering,” Proceedings of the National Academy of Sciences 104, no. 24 (2007): 9949–54; T. M. L. Wigley, “A Combined Mitigation/Geoengineering Approach to Climate Stabilization,” Science 314, no. 5798 (2007): 452–54; Scott Barrett, “The Incredible Economics of Geoengineering,” Environmental and Resource Economics 39, no. 1 (2008): 45–54; Toby Svoboda, The Ethics of Climate Engineering: Solar Radiation Management and Non-Ideal Justice (New York: Routledge, 2017). 13.  David Keith, Edward Parson, and M. Granger Morgan, “Research on Global Sun Block Needed Now’, Nature 463 (2010): 426–27. 14.  Dale Jamieson, Reason in a Dark Time: Why the Struggle against Climate Change Failed—and What It Means for Our Future (Oxford: Oxford University Press, 2014), 220. 15. Ibid. 16.  Albert Lin, “Does Geoengineering Present a Moral Hazard,” Ecology Law Quarterly 40, no. 3 (2013): 673–712. 17.  Stephen Gardiner, “Is ‘Arming the Future’ with Geoengineering Really the Lesser Evil? Some Doubts about the Ethics of Intentionally Manipulating the Climate System,” in Climate Ethics, eds. Stephen M. Gardiner et al. (Oxford: Oxford University Press, 2010), 284–312. 18. IPCC, “Summary for Policy Makers,” 4–5; Philip Cafaro, “Climate Ethics and Population Policy: A Review of Recent Philosophical Work,” WIREs Climate Change, forthcoming, 2–3, https://doi.org/10.1002/wcc.748. 19.  B. O’Neill et al., “Global Demographic Trends and Future Carbon Emissions,” Proceedings of the National Academy of Sciences 107, no. 41 (2010): 17521–26; B. O’Neill et al., “Demographic Change and Carbon Dioxide Emissions,” The Lancet 380, no. 9837 (2012): 157–64; B. O’Neill, L. Jiang, and P. Gerland, “Plausible Reductions in Future Population Growth and Implications for the Environment,” Proceedings of the National Academy of Sciences 112, no. 6 (2015): E506, https://doi.org/10.1073/pnas.1421989112. 20.  Sarah Conly, One Child: Do We Have a Right to Have More? (Oxford: Oxford University Press, 2016); Colin Hickey, Travis Rieder, and Jake Earl, “Population Engineering and the Fight against Climate Change,” Social Theory and Practice 42, no. 4 (2016): 845–70; Elizabeth Cripps, “Population, Climate Change, and Global Justice: A Moral Framework for the Debate,” The Journal of Population and Sustainability 1, no. 2 (2017): 23–36; Diana Coole, Should We Control World Population? (Cambridge: Polity Press, 2018); Partha Dasgupta, Time and Generations: Population Ethics for a Diminishing Planet (New York: Columbia University Press, 2019); Hedberg, Environmental Impact of Overpopulation. 21. Conly, One Child. 22. A. Hendrixson et al., “Confronting Populationism: Feminist Challenges to Population Control in an Era of Climate Change,” Gender, Place & Culture 27, no. 3 (2020): 307–15. https://doi.org/10.1080/0966369X.2019.1639634. 23.  Caney, “Climate Justice.” 24.  Henry Shue, Climate Justice: Vulnerability and Protection (Oxford: Oxford University Press, 2014), 182–86. C limate C han g e 

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25.  Edward Page, “Give It Up for Climate Change: A Defense of the Beneficiary Pays Principle,” International Theory 4, no. 2 (2012): 300–330, https://doi.org/10.1017 /S175297191200005X. 26. Darrel Moellendorf, The Moral Challenge of Dangerous Climate Change: Values, Poverty, and Policy (Cambridge: Cambridge University Press, 2014), 173–80; Shue, Climate Justice, 186–89. 27. Roxana Saberi, “Island Nations Seek a Way to Sue Big Polluters over Climate Change that Could Leave Some Underwater,” CBS News (CBS Interactive, 2021), https:// www.cbsnews.com/news/climate-change-antigua-barbuda -tuvalu-lawsuit-polluters/. 28.  Climate Watch, “Historical GHG Emissions” (Washington, DC: World Resources Institute, 2019), https:// www.climatewatchdata.org/ghg-emissions. 29.  Walter Sinnott-Armstrong, “It’s Not My Fault: Global Warming and Individual Moral Obligations,” in Perspectives on Climate Change: Science, Politics, Ethics, eds. Walter Sinnott-Armstrong and Richard B. Howarth (Amsterdam: Elsevier, 2005), 285‒307; Joakim Sandberg, “‘My Emissions Make No Difference”: Climate Change and the Argument from Inconsequentialism,” Environmental Ethics 33, no. 3 (2011): 229‒48; Dan Shahar, “Treading Lightly on the Climate in a Problem-Ridden World,” Ethics, Policy & Environment 19, no. 2 (2016): 183–95; Ewan Kingston and Walter Sinnott-Armstrong, “What’s Wrong with Joyguzzling?,” Ethical Theory and Moral Practice 21, no. 1 (2018): 169–86. 30. Sinnott-Armstrong, “It’s Not My Fault”; Jason Kawall, “Future Harms and Current Offspring,” Ethics, Policy & Environment 14, no. 1 (2011): 23–26; Dale Jamieson, “Climate Matters: Ethics in a Warming World by John Broome,” Ethics and International Affairs 28, no. 2 (2014), https://www.ethicsandinternationalaffairs.org/2014 /climate-matters-ethics-in-a-warming-world-by-john -broome/; Jamieson, Reason in a Dark Time, 144–69; Travis Rieder, Toward a Small Family Ethic: How Overpopulation and Climate Change Are Affecting the Morality of Procreation (Cham: Springer, 2016), 13–27. 31.  John Nolt, “How Harmful Are the Average American’s Greenhouse Gas Emissions?,” Ethics, Policy & Environment 14, no. 1 (2011): 3–10. 32. John Broom, Climate Matters: Ethics in a Warming World (New York: W. W. Norton & Company, 2012), 75–78. 33. Judith Lichtenberg, “Negative Duties, Positive Duties, and the ‘New Harms,’” Ethics 120, no. 3 (2010): 557–78; Elizabeth Cripps, “Climate Change, Collective Harm, and Legitimate Coercion,” Critical Review of International Social and Political Philosophy 14, no. 2 (2011): 171–93; Ben Almassi, “Climate Change and the Ethics of Individual Emissions: A Response to Sinnott-Armstrong,” Perspectives 4, no. 1 (2012): 4‒21; Anne Schwenkenbecher, “Is There an Obligation to Reduce One’s Individual Carbon Footprint?,” Critical Review of International Social and Political Philosophy 17, no. 2 (2014): 168‒88; Augustin Fragnière, 390 

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“How Demanding Is Our Climate Duty? An Application of the No-Harm Principle of Individual Emissions,” Environmental Values 27, no. 6 (2018), 654–56. 34. Rieder, Toward a Small Family Ethic, 29. 35.  Sandberg, “My Emissions Make No Difference.” 36. Marion Hourdequin, “Climate, Collective Action, and Individual Ethical Obligations,” Environmental Values 19, no. 4 (2010): 443‒64; Trevor Hedberg, “Climate Change, Moral Integrity, and Obligations to Reduce Individual Greenhouse Gas Emissions,” Ethics, Policy & Environment 21, no. 1 (2018): 64–80. 37. Christine Overall, Why Have Children?: The Ethical Debate (Cambridge: MIT Press, 2012), 173–202; Rieder, Toward a Small Family Ethic; Trevor Hedberg, “The Duty to Reduce Greenhouse Gas Emissions and the Limits of Permissible Procreation,” Essays in Philosophy 20, no. 1 (2019); Hedberg, Environmental Impact of Overpopulation, 84–105. 38. Seth Wynes and Kimberly Nicholas, “The Climate Mitigation Gap: Education and Government Recommendations Miss the Most Effective Individual Actions,” Environmental Research Letters 12, no. 7 (2017), iopscience.iop.org /article/10.1088/1748-9326/aa7541. 39.  Derek Parfit, Reasons and Persons (Oxford: Oxford University Press, 1987), 362–63. 40. Thomas Schwartz, “Obligations to Posterity,” in Obligations to Future Generations, eds. R. I. Sikora and Brian Barry (Philadelphia: Temple University Press, 1978), 3–14; Robert Adams, “Existence, Self-Interest, and the Problem of Evil,” Nous 13, no. 1 (1979): 53–65; Gregory Kavka, “The Paradox of Future Individuals,” Philosophy & Public Affairs 11, no. 2 (1982): 93–112. 41.  Trevor Hedberg, The Environmental Impact of Overpopulation: The Ethics of Procreation (London: Routledge, 2020), 41. 42.  Seana Shiffrin, “Wrongful Life, Procreative Responsibility, and the Significance of Harm,” Legal Theory 5 (1999): 117–48; Elizabeth Harman, “Can We Harm and Benefit in Creating?,” Philosophical Perspectives 18, no. 1 (2004): 89–113; Elizabeth Harman, “Harming as Causing Harm,” in Harming Future Persons: Ethics, Genetics and the Nonidentity Problem, eds. Melinda Roberts and David Wasserman (Dordrecht: Springer, 2009), 137–54. 43. James Woodward, “The Non-Identity Problem,” Ethics 96, no. 4 (1986): 804–31; Robert Elliot, “The Rights of Future People,” Journal of Applied Philosophy 6, no. 2 (1989): 159–69; Doran Smolkin, “Toward a Rights-Based Solution to the Non-Identity Problem,” Journal of Social Philosophy 30, no. 1 (1999): 195–96; J. David Velleman, “Persons in Prospect,” Philosophy & Public Affairs 36, no. 3 (2008): 221–88. 44.  David DeGrazia, Creation Ethics: Reproduction, Genetics, and Quality of Life (Oxford: Oxford University Press, 2012), 180–81. 45. Melinda Roberts, “The Nonidentity Problem,” Stanford Encyclopedia of Philosophy (Stanford: Stanford University, 2019), https://plato.stanford.edu/entries/

nonidentity-problem/; Hedberg, The Environmental Impact of Overpopulation, 167–78. 46.  David Boonin, The Non-Identity Problem and the Ethics of Future People (Oxford: Oxford University Press, 2014). 47. John Nolt, “Nonanthropocentric Climate Ethics,” WIREs Climate Change 2, no. 5 (2011): 701–11, https:// doi.org/10.1002/wcc.131; Jeff Sebo, Saving Animals, Saving Ourselves: Why Animals Matter for Pandemics, Climate Change, and other Catastrophes (Oxford: Oxford University Press, 2022).

48.  IPCC, “Summary for Policy Makers,” 20. 49.  Johan Rockström et al., “A Roadmap for Rapid Decarbonization,” Science 355, no. 6331 (2017): 1269–71. 50.  United Nations, “Glasgow Climate Pact” (United Nations: Glasgow, 2021), https://unfccc.int/sites/default /files/resource/cma3_auv_2_cover%2520decision.pdf. 51.  Michael Mann, “Earth Will Cross the Climate Danger Threshold by 2036,” Scientific American (2014), https:// www.scientificamerican.com/article/earth-will-cross-theclimate-danger-threshold-by-2036/.

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CHAPTER 34

The Ethics of Animal Experimentation Adam Shriver

F

or centuries, humans have performed invasive research on nonhuman animals with hopes of better understanding the basic functioning of organisms and of disease and, for just as long, these practices have been questioned by those who object to the intentional infliction of pain and suffering on other beings. During a significant portion of this history, researchers influenced by the views of philosopher René Descartes claimed that invasive techniques were morally acceptable because they believed only human beings are capable of feeling pain. Today, the suggestion that other animals do not feel is no longer considered plausible by the public nor by the majority of the scientific community.1 Even those advocating most forcefully for research on animals suggest that this research is a “privilege” afforded to humans only on the condition that humans treat the animals with appropriate care and respect. As such, there is today widespread agreement that research on nonhuman animals, particularly those whose behavior most closely resembles our own, is a practice that is subject to constraints that come from ethical considerations. What those constraints should be, however, is the subject of intense ethical debate. At present, it is estimated that approximately 127 million animals are used in laboratory experiments each year.2 Scientists are for the most part primarily interested in understanding the normal

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and pathological functioning of human beings, and since humans would of course be the best models for human conditions, we might ask why animal models are used so prevalently in biomedical research. In general, the answer to this question is that the research performed on animals would be deemed unethical or unnecessarily risky were it performed on humans. This includes such practices as intentionally exposing organisms to disease, intentionally inducing negative states such as pain or depression, testing the effects of concussive trauma on the body, surgically implanting devices to monitor or manipulate the body, testing new drugs or medical devices with unknown effects, and genetically altering organisms to observe the effects of changing their biology. In fact, the idea that tests should be done on animals in order to reduce risky or harmful testing is made explicit in canonical bioethics documents such as the Declaration of Helsinki,3 which states that research on humans should be based on previous research on nonhuman animals in order to minimize risk to humans. Given some of the types of tests performed on animals (exposure to disease and injury, testing new products, examining states such as pain and depression), we can surmise that these tests are likely to cause pain and suffering. Though modern regulations are designed to eliminate “unnecessary” suffering from research on animals, all countries allow

untreated pain during research in certain circumstances if it is determined that treating the pain might interfere with experimental results. In addition to any suffering caused directly by research interventions, animals are often kept in cramped, unnatural conditions where they are not able to perform many of the basic behaviors they would in a natural environment. And there are also many concerns about how animals are obtained, whether through being captured in the wild or obtained from breeding facilities with questionable track records. So it is clear that animals do endure harms as part of modern medical research. Advocates of animal research argue that these harms are outweighed by the benefits of the knowledge obtained by these experiments. But polling around the world4 has shown that many people are increasingly uncomfortable with the use of animals in research, and numerous studies in in the past thirty years have demonstrated remarkable intelligence in various species. Moreover, our understanding of ethics has evolved in recent times, and as ethicists have thought more about the lives of animals, they have introduced important new ethical considerations into debates about animal research.5 Given this growing concern, and the harms that animals endure, it is inevitable that debates about the use of animals in invasive research will continue. In fact, history has shown that people take ethics very seriously, particularly in the realm of research. After World War II, the Nuremberg Principles were established to ensure that the types of research conducted by Nazi doctors would never happen again. When the U.S. Government was found to be funding studies where researchers were allowing syphilis to go untreated in Black males despite knowing that penicillin was an effective treatment, the public was shocked and demanded improvement.6 And similarly in regard to animals, when Sports Illustrated and Life Magazine published articles detailing stories of dealers capturing people’s pets and selling them to laboratories for invasive research, public outrage resulted in the passage of the Animal Welfare Act in the United States.7 So it is clear that the views of the public suggest there should be moral constraints on research practices.

A P P E A L I N G TO CO N S E Q U E N C E S TO J U S T I FY I N VA S I V E A N I MA L R E S E A R C H Some ethicists believe that the rightness and wrongness of actions are wholly determined by how much good or bad was produced by those actions. These ethicists fall under the label “consequentialist.” According to consequentialists, actions should be judged entirely by the outcomes they produce. If an action produces more good than bad, then it is a good action. If it produces more bad than good, then it was a bad action. In general, consequentialism can be thought of as comparing the outcomes of different actions: to say that a particular action is the “best” action would mean that it results in the best possible outcomes relative to all other alternatives. Many consequentialist theories therefore say that “right” actions are those actions that produce the consequences with the best overall outcomes (i.e., the outcomes with the most good and least bad). But how do we decide what the best consequences are? The most familiar answer to this question comes from a version of consequentialism known as utilitarianism. According to utilitarians, the only states that are intrinsically good are states of happiness, and the only states that are intrinsically bad are negative feelings. To say that something is intrinsically good means that it is good in itself. In contrast, to say that something is instrumentally good means that it is good only in virtue of being instrumental to some other thing that is good. For example, a utilitarian might say that a high-paying job is good, but what they mean is that the money provided by the job tends to produce a net balance of happiness. If a high-paying job did not lead to happiness, it would no longer be good; hence the job is good only insofar as it is instrumental in obtaining something else, happiness, whereas happiness is good in itself. Since economists sometimes use the phrase “maximizing utility” to refer to people making choices that maximize their own well-being, it is important to recognize that utilitarianism as an ethical theory refers to the happiness and suffering of everyone or every being who is affected by an action. If a particular action T he E thics of A nimal E xpe r imentation 

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brings me a small amount of happiness, but causes other people distress or suffering, then it is not a good action according to utilitarianism. In fact, one of the assumptions of utilitarianism is that we can assign approximate values to different states of happiness in different individuals and use those to compare the outcomes of different actions. The outcome with the best ratio of total overall happiness to suffering (of all beings affected) is the outcome we should be aiming at with our actions. One feature of consequentialism stands out variously as both a strength and as a weakness, depending on the context. Because actions are evaluated based on the consequences that are produced, it follows that there is no particular action that is always prohibited or always required, since we can imagine hypothetical situations where the action produces the best overall consequences. For example, though a utilitarian could say that convicting innocent people is generally wrong since it causes harm and suffering to those that don’t deserve it and allows criminals to thrive, critics can easily think up hypothetical situations where convicting an innocent person is the only way to prevent a riot that would cause great suffering. In such cases, consequentialists would seem to be committed to saying that the right thing to do is to frame the innocent person. Many people find this idea offensive. On the other hand, when the potential negative consequences are bad enough, people are drawn to this feature of consequentialism. For example, if (hypothetically) the only way to prevent the explosion of a bomb that would kill millions of people is to engage in torture, then people generally seem to think torture should be allowed in that situation. Utilitarianism has frequently been at the heart of many debates about animal research. The most common argument put forward in favor of invasive research on animals has been that any harms associated with animal research are “outweighed” by the potential benefits for humans. On utilitarian views, this would mean that the net amount of happiness produced or suffering prevented by medical advancements caused by animal research outweighs the amount of suffering caused to animals in research. As 394 

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noted before, no particular action is considered always wrong on consequentialist reasoning, and as such even invasive research that initially seems shocking could arguably be justified on these views if it had the possibility of producing good enough results. Consider the following case. During the early stages of the Covid-19 pandemic, scientists were investigating the effectiveness of mRNA vaccines to see if those vaccines could stimulate an immune response. According to the NIAID website,8 after realizing that mice do not naturally respond to SARSCoV-2, researchers then, “overcame this problem by generating mice that can express the human version of ACE2 and can therefore be infected with SARSCoV-2”9 and proceeded to test the effectiveness of the vaccines on mice, causing many mice to get seriously ill and die. The researchers also later tested the vaccines in a similar fashion on nonhuman primates. According to the logic of consequentialist arguments for animal research, we may acknowledge that this research caused suffering to primates, who were susceptible to Covid-19, and to mice who were specifically genetically modified in order to allow them to get sick from the virus. However, according to this reasoning, the suffering caused in this relatively circumscribed number of animals, which do count as negative consequences, is far outweighed by the possibility of saving potentially millions of humans from suffering and dying of Covid. If we look at the consequences, a world in which a small number of animals suffer from a disease but millions of other instances of suffering from that disease are prevented is preferable to a world in which millions more suffered. Similarly, according to this logic, many other types of invasive animal research can be justified if we look at the potential positive consequences that may result. The word “potential” is important in the phrase “potential positive consequences.” When research is conducted, there is no guarantee that it will be successful. So imagine that three sets of vaccines were tested on animals and only one was successful. In this case, we appeal to what is known as “expected utility.” If we multiply the possibility of success by the consequences, this gives us an estimate of expected utility. As long as the expected utility of research

outweighs the expected utility of refraining from research, the research can be justified by appeal to consequentialist reasoning. Relatedly, research proponents often point out that “basic research” investigating the underlying biology of organisms may not directly result in the ability to treat a disease but can lead to breakthroughs that eventually lead to important improvements in health. So, for example, understanding the functioning of individual neurons has been tremendously important for treating medical conditions and improving well-being, but the original experiments studying neurons in giant squid axons did not result in immediate treatments of medical conditions.10 Rather, they helped in the shaping of our basic understanding of the nervous system, which only many years later resulted in clinical applications.

CO NSE QUE NT I A L I ST A ND UTILITARIAN CR I T I Q U E S OF ANIMAL RE SE A R CH On the other hand, utilitarianism has also historically been associated with concern for animals that transcended the views of the time. Since utilitarianism emphasizes the value and disvalue of pleasure and pain, respectively, it follows that the theory would not just apply to humans, but also to other animals that are capable of feeling pleasure and pain. The following quote from Jeremy Bentham, the founder of modern-day utilitarianism, “The question is not, Can they reason? nor, Can they talk? but, Can they suffer?,”11 has been cited by numerous animal advocates as capturing the criteria we should use to assess the moral status of other animals. In fact, Peter Singer, the most prominent utilitarian of our time, also has put forward one of the most influential criticisms of animal research. In his book Animal Liberation,12 Singer described numerous examples of research on animals that inflicted great suffering for what seem to be relatively trivial findings. Singer did not base his arguments in that book explicitly on utilitarianism as he was targeting a general audience, but it’s easy to see how his

arguments fit with a utilitarian perspective. Since utilitarians hold that we should maximize overall happiness and minimize overall suffering, it follows that it doesn’t especially matter whose happiness and suffering we are talking about. My own suffering counts as much in the utilitarian equation as anyone else’s. And similarly, the suffering of a nonhuman animal such as a mouse or monkey should also count as much as a human’s suffering, assuming that their mental states are relevantly similar. And given this backdrop, Singer famously suggested that if medical researchers were not willing to perform a procedure on orphaned humans with severe brain damage (he suggested orphans to eliminate objections based on the suffering of parents), then they should similarly not be willing to perform that procedure on a nonhuman animal. Consider how a utilitarian critic of animal research might respond to the example at the end of the last section. First, they might argue that the framing of allowing some small number of animals to get sick and die versus millions of humans getting sick and dying is misleading. A utilitarian should consider the consequences of all available actions, and if there was some other approach that also could have resulted in the development of the vaccine without causing the suffering of animals, that approach would be better. For example, perhaps a different regulatory system where researchers jumped directly to challenge studies on healthy young humans who were unlikely to have severe symptoms from Covid could have demonstrated the efficacy of the vaccine. Second, utilitarian critics of research might point out that the previous example is not representative of the vast majority of animal research. Even if we can point to some examples where research on animals directly led to medical breakthroughs, there seem to be many cases of animal research that cause a lot of suffering for relatively minimal, if not negligible, gains. Singer’s book described a type of test known as Draize testing, where chemicals are forcefully dropped in animals’ eyes without analgesia in order to test their toxicity, often for the development of new cosmetic products. These tests are still used today. A consequentialist could point out that causing T he E thics of A nimal E xpe r imentation 

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suffering to animals for the sake of developing new cosmetic products is very different from causing suffering in order to prevent disease and illness. Finally, and related to the first point, is the fact that consequentialist assessments are comparative. That is, we don’t just ask what good and bad would come about from a particular action, we assess what would happen under different possibilities and then choose the course of action with the best consequences. So in order to say whether animal research is ethically justified according to utilitarianism, we would need to consider what other alternatives are available. We therefore need to ask what other types of noninvasive research could have been conducted and what the effects of that research would have been. If other types of research could have produced as good of results but without the animal suffering, it would clearly be preferable according to utilitarian thinking. In fact, even if it did not produce as much knowledge, it would be possible that the combination of the good that was produced along with the absence of suffering could mean that alternative types of research are preferable to invasive animal research. And if improving human health is the ultimate goal of research, then taking an even more broad-minded approach, we might also ask if public health could be better improved by other resource allocations that have nothing to do with research. Joel Marks,13 for example, has argued that providing preventative health care and health education would improve human health far more dramatically in the United States than would spending the same amount of money on animal research. In general, then, we may say the following about consequentialist perspectives on animal research: they do not seem to lend themselves to blanket prohibitions on all research on animals since consequentialist views don’t rule out any particular types of actions, and we can readily imagine scenarios where the consequences of the research outweigh any harms caused. However, there also seem to be many current practices where the benefits seem very unlikely to outweigh the harms caused via animal suffering. As to a more general statement on whether animal research as it is currently practiced is justified, a 396 

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consequentialist evaluation of this would depend on how one weighs the suffering of animals compared to humans, how likely one thinks it is that medical progress could be achieved via other methods, and how much faith one has in current and future medical practices to improve lives.

DE O N TO LO G I C A L ETHICAL THEORIES Consequentialists think that what is good determines what is right; right actions are those that produce the outcome with the most good. In contrast, other ethicists believe that determining which actions are “right” depends on things other than simply assessing the consequences that follow from those actions. This approach to ethics has been called deontological ethics. A familiar term that fits with the deontological conception of ethics is the notion of rights as used in human rights or animal rights. To say that something is a right implies that it generates constraints on others that cannot be overridden by self-interested and consequentialist considerations. For example, to say that someone has a right to life means that it is morally wrong to kill them, not that it is morally wrong to kill them only if doing so results in less overall happiness. For this reason, some ethicists have described the notion of rights as “trump cards” against self-interested and consequentialist reasoning. There are many different versions of deontological theories in philosophical ethics. The most prominent belongs to Immanuel Kant, an eighteenth-century philosopher. Kant proposed the categorical imperative, which states that we should “act only on those maxims you could will to become a universal law.” What this means is that, when considering whether to engage in a particular action in order to achieve a goal, you should imagine what the world would be like if everyone engaged in that action in order to achieve the same goal. Kant thought that if imagining everyone doing the action led to a contradiction, the action is wrong. Kant believed that morality was closely tied to rationality and that the reason that acting immorally

was bad is because it was a form of irrationality. He also thought that morality was tied to rationality in another way: he believed that human beings, in virtue of their rationality, are the only beings who “count” morally. Though Kant suggested that people shouldn’t treat animals cruelly because doing so might lead to cruelty toward other humans, he didn’t think that causing harm to animals was morally wrong independently of the effects it could have on the treatment of other humans. However, other deontological accounts based on ideas other than Kant’s complicated ideas about rationality are more sympathetic to the plight of animals. Another influential deontological account comes from W. D. Ross. Ross also believed that we should judge actions on things other than their consequences. He argued that people shared certain basic moral intuitions about right and wrong actions that should guide our behavior and could form the basis of rights. Unlike Kant, Ross did not attempt to explain why those intuitions are justified: rather, he thought they were self-evident. One of the intuitions he believed was self-evident was that we should not harm others, so in some circumstances he believed we could use roughly consequentialist thinking to determine how to minimize harms. However, he also believed there were other rules that we are morally obligated to follow, such as keeping promises and showing gratitude, that resist a purely consequentialist interpretation. Ross, unlike Kant, believed that pleasure in animals was intrinsically good and that pain in animals was intrinsically bad, and that we therefore did have duties toward animals that stemmed from our general moral duties. However, despite believing that we have duties toward animals, Ross did not believe that animals have rights, because he believed that in order to have a right one must be able to claim the right, which requires more advanced cognitive capacities, such as the ability to understand the idea of rights. However, another prominent rights theorist has identified problems with this account and correspondingly made a forceful case for animal rights: Tom Regan. Regan rejected the idea that possessing rights required complicated rational thought or the ability

to understand the concept of rights.14 He pointed out that for any explanation you provide for why animals don’t possess rights, there will also be humans to whom the same explanation applies. For example, young infants do not possess the capacity for rationality or the concept of rights, and yet most people who believe in human rights think that they also have rights. Therefore, Regan concluded, the possession of sophisticated concepts can’t be the proper basis for possession of moral rights. But what is the proper basis for rights? To discover this, Regan considered what common quality united all of the humans we believe are in possession of rights. Regan wrote that the quality that unites us is that “we are aware of the world, and aware of what happens to us,”15 and that what happens to us “matters to us because it makes a difference to the quality and duration of our lives.”16 Regan’s shorthand for this condition is being the subject-of-a-life, and he suggested that all humans who were subjects-of-a-life were also entitled to human rights. Regan extended this thought by considering whether beings other than humans might also meet this condition. In his earliest work, he suggested that all mammals clearly have all of the capacities required to meet the condition of being a subject-of-alife, based on similarities in their physiology, behavior, and shared evolutionary roots. In his later book, Empty Cages,17 he pointed to contemporary research on intelligence in birds and concluded that they also are obvious candidates for the possession of rights. It’s important to note that Regan did not make the claim that animals possess all of the same rights as adult humans. Critics of the notion of animal rights sometimes parody the idea by suggesting that animal rights advocates want dogs to be allowed to vote (or other claims along those lines), but the actual rights Regan suggested are more limited. In particular, Regan thought that animals have the right not to be harmed on the grounds that doing so benefits others. In other words, their right not to be harmed is a trump card against self-interested and consequentialist reasons for using the animals as a means to an end. Regan’s rights account has stronger implications than utilitarian views for animal research. Though T he E thics of A nimal E xpe r imentation 

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Peter Singer in practice has opposed most invasive research on animals, in principle, a utilitarian view would be willing to allow some research that caused suffering if doing so was necessary to prevent greater suffering. However, a deontological animal rights approach to animals would suggest any research that causes harm to animals is wrong, even if such research leads to medical advancements. On these views, just as we are not willing to perform invasive, harmful experiments on humans that could advance medical knowledge, we similarly should not be willing to perform invasive research on other sentient animals. With every right, there comes a corresponding duty. For example, if we say that someone has a right to life, this means that we have a duty not to do anything that interferes with that right. Regan thinks that multiple duties arise from animals’ right not to be harmed. First, of course, is that we have the duty not to cause them harm ourselves. This means refraining from eating animals and an absolute prohibition on using them for research. But he also says we have a duty to speak up and defend them from harm, just as we have a duty to protect vulnerable people from harmful practices. So depending on what capacities one thinks are required for rights, various nonhuman animals may or may not be eligible.

VIR TUE E THICS A ND CH A R AC T E R BASE D AP P ROACH E S Consequentialist and deontological ethical theories focus on providing guidance for particular actions, with consequentialists suggesting that actions can be evaluated purely by the states of affairs that they produce and deontologists suggesting that there are other considerations that bear on the rightness and wrongness of actions. However, in Eastern philosophy, and for much of the history of Western philosophy, discussion of ethics was not focused on evaluating particular actions but rather on evaluating the character of particular individuals. As noted earlier, questions such as “what kind of a person should I be?” and “what kinds of things should I value?” are not directly related to particular actions. 398 

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The character-focused way of thinking about ethics faded from debate for a period of time in Western philosophy, but was rejuvenated in the twentieth century. And though we may not use the terms “virtue” and “vice” very often in everyday language, we nevertheless have many words that refer to virtuous and vicious character traits such as courageous, wise, self-indulgent, and intolerant. The main influence on most contemporary Western accounts of virtue was the work of the ancient Greek philosopher Aristotle. Aristotle was searching for the highest good, and he believed that it would have the following three features. First he believed the highest good would be complete, meaning that we always choose it for itself, not for something else. Second, he suggested that it would be self-sufficient, in that all by itself it makes a life choiceworthy. Finally, he suggested that all other goods are chosen for its sake. Based on these qualities Aristotle determined that happiness was the highest good. So far, this might sound similar to utilitarianism, which emphasizes happiness as the sole good, but Aristotle had something different in mind. His idea of happiness was not a particular feeling or a momentary state of being, but rather is more accurately translated as “flourishing” or “living well.” In other words, he was describing a character trait (or actually a group of character traits) rather than a feeling. Aristotle thought that everything from plants to nonhuman animals to human animals had a specific function (referred to as a telos) and that, correspondingly, living well meant living according to that telos. He thought we could determine the telos of humanity by seeing what characteristics distinguished us from other beings. Plants are alive, so being alive doesn’t distinguish humans, and nonhuman animals can move around on their own and sense and perceive the world. But what Aristotle thought distinguished humans from all else was our rationality, hence his expression that humans are a “rational animal.” For Aristotle, being rational meant finding the “mean” between different extremes: it is a vice to be overly aggressive and rush into battle unprepared, and it is a vice to be cowardly and afraid, but in between those two extremes was the virtue courage.

Aristotle believed in a clear hierarchy with humans at the top, other animals below them, and plants below animals. However, his ideas are relevant for animal ethics in two different ways. First, contemporary philosopher Bernard Rollin has made use of the conception of telos to propose a new way of taking animal welfare under consideration.18 Unlike Aristotle, Rollin does not see humans and other animals living on a crude hierarchy with humans at the top, but he did believe that considering an organism’s function was an important way of understanding what it means for the organism to flourish. Rollin proposed his notion of telos in part as a critique of utilitarian accounts of welfare that emphasized mental states such as pleasure and pain as the only relevant considerations. According to accounts that only emphasize mental states, painlessly killing an animal would presumably not be wrong, except insofar as doing so deprives that animal of future pleasures. Rollin’s account, on the other hand, acknowledges that all animals have an interest in living. Moreover, his account opens up considerations for providing opportunities for animals to engage in their natural behaviors in order to better express their true natures, or telos. Modern laboratory animal welfare policies are slowly incorporating opportunities for natural behavior into their attempts at improving conditions.19 The other way in which virtue ethics is particularly relevant toward animals in a laboratory setting is via different accounts of what it means to have a good character. Unsurprisingly, there are versions of virtue ethics that strongly emphasize treating animals with kindness and refraining from causing them harm.20 But one ethical tradition focused on moral worth has been especially relevant for thinking about animals in a laboratory setting: feminist ethics. Though the feminist ethics tradition need not be considered part of the virtue ethics tradition, it shares with that tradition a rejection of the focus on ethical theory as only describing how one should act in particular circumstances. Many in this tradition emphasize the moral significance of the relationships humans find themselves in, and see moral emotions like empathy and compassion as important components of morality

rather than feelings that should be rejected during coldly rational, analytic moral theorizing. One particular thinker has put forward an influential account of the role of empathy in our treatment of animals: Lori Gruen. In her book, Entangled Empathy, Gruen stresses that humans are already in complex relationships with nonhuman animals.21 Our relationships provide us with obligations that shape how we should be interacting with these animals. In particular, empathy can serve as a guide for how we should treat others, and should lead us to act in ways that take their interests into account. Empathy for another being can cause “moral distress” in us if we see that other being suffering. Sometimes our moral distress response can be “too much” or “too little” in relation to other animals, but with thought and understanding of the other being, we can adjust our empathy to appropriately respond. In this way, part of the moral worth of a person can be assessed by seeing if that person acknowledges his or her complicated relationships with other animals and whether the person appropriately uses empathy to guide their behavior in relation to these animals. Of course, certain individuals such as animal caretakers have particularly strong relationships with animals and correspondingly strong demands because of those relationships, but all of us need to be aware that we are already “entangled” in relationships with beings whose lives are affected by our actions. In this way, having a good character very much requires treating other animals well, and not flippantly using them to satisfy human desires.

CO M B I N I N G V I E WS In everyday practice, many people seem to operate in a way that seems to mix these ideas: sometimes using consequentialist reasoning to make decisions, sometimes following deontological rules, sometimes emphasizing character traits. As one example, I here consider a combination of consequentialist and virtue ethics reasoning. As noted before, most proponents of research on animals argue in favor of the practice by arguing that T he E thics of A nimal E xpe r imentation 

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the consequences of the practice are net positive, that any harms that occur to the animals are outweighed by the potential benefits that result. They also often further emphasize that in fact animals are treated with great care and compassion in the laboratory because the research is viewed as a privilege by those who participate, and suggest that researchers and animal caretakers often have companion animals and love animals as much as anyone else. However, from the virtue ethics tradition, we might note that having a character trait of “being kind to animals” would involve more than just acting kindly toward animals in one particular setting. To truly possess that trait, one must behave appropriately across all relevant contexts. And if the principle that is meant to justify animal research is the idea that the harms outweigh the benefits, it seems as though this rationale should also be applied to other interactions with animals. However, if we consider the practice of consuming meat from animals that are raised in factory farms, the argument that the harms outweigh the benefits is far more difficult to make. Good tasting and nutritious foods can be obtained from sources other than animals, and factory farming is responsible for a far greater amount of suffering than animal research. As such, the benefits of meat-eating are far less and the harms are far greater than those associated with research. In particular, whereas research on animals might plausibly result in medical breakthroughs that could not have occurred otherwise, there is not a plausible argument that the benefits of eating meat could not have been obtained in some other way. So, if an advocate for research on animals also consumes meat from factory farms, it would be difficult to accept that they truly have “kindness to animals” as a persistent character trait. Possessing particular traits requires exercising those traits in all relevant circumstances, and selectively applying consequentialist reasoning in one context but not in other similar contexts is not sufficient to show a true commitment to the ethical principle expressed by this reasoning. Similarly, given the now growing

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scientific evidence for the need to reduce per capita meat consumption to keep the planet within environmental limits,22 an appeal to the importance of scientific thinking as justification for animal research would similarly look less compelling alongside the casual consumption of factory-farmed meat.

CO N C LU S I O N Consequentialist reasoning has been used as the primary ethical justification for invasive research on nonhuman animals that would not be allowed on humans. However, there have been forceful challenges to this logic both from other consequentialists and from other ethical traditions. Moreover, if the reasoning used to justify research on animals is applied only in that context but ignored in others, one might question whether the actions are truly in line with a consistent approach to ethics.

N OT E S 1. P. Low et al., “The Cambridge Declaration on Consciousness,” in Francis Crick Memorial Conference, Cambridge, England (July 2012), 1–2; J. Birch et al., Review of the Evidence of Sentience in Cephalopod Molluscs and Decapod Crustaceans, 2021. 2.  A. Knight “127 Million Non-human Vertebrates Used Worldwide for Scientific Purposes in 2005,” Alternatives to Laboratory Animals 36, no. 5 (2008): 494–96. 3.  World Medical Association, “Declaration of Helsinki,” Journal of the American Medical Association 277, no. 11 (1997): 925–26. 4. Pew Research Center, “Most Americans Accept Genetic Engineering of Animals that Benefits Human Health, but Many Oppose Other Uses,” August 2018; F. C. von Roten, “Public Perceptions of Animal Experimentation across Europe,” Public Understanding of Science 22, no. 6 (2013): 691–703. 5.  L. Gruen, ed., The Ethics of Captivity (Oxford University Press on Demand, 2014); A. Fenton, “Holding Animal-Based Research to Our Highest Ethical Standards: Re-seeing Two Emergent Laboratory Practices and the Ethical Significance of Research Animal Dissent,” ILAR journal 60, no. 3 (2019): 397–403; B. Bovenkerk, and J. Keulartz, Animals in Our Midst: The Challenges of Co-existing with Animals in the Anthropocene (Springer Nature, 2021), 579.

6.  A. M. Brandt, “Racism and Research: The Case of the Tuskegee Syphilis Study,” Hastings Center Report, (1978): 21–29; see also chapter 11, “Race and Gender in Research,” by ChoGlueck and Lloyd in this volume. 7.  L. Carbone, What Animals Want: Expertise and Advocacy in Laboratory Animal Welfare Policy (Oxford University Press, 2004). 8. NIAID Website, “The Important Role of Animal Research in mRNA COVID-19 Vaccine Development,” 2021, https://www.niaid.nih.gov/news-events/role-animal-re search-mrna-covid-19-vaccine-development, accessed on January 21, 2022. 9. Ibid. 10.  J. Z. Young, “The Functioning of the Giant Nerve Fibres of the Squid,” Journal of Experimental Biology 15, no. 2 (1938): 170–85. 11. Jeremy Bentham, An Introduction to the Principles of Morals and Legislation (Dover Publications, 1780). 12.  P. Singer, “Animal Liberation,” in Animal Rights (Palgrave Macmillan, 1973), 7–18.

13.  J. Marks, “Accept No Substitutes: The Ethics of Alternatives,” Hastings Center Report 42, no. s1 (2012): S16–S18. 14. T. Regan, The Case for Animal Rights (University of California Press, 2004). 15. Ibid. 16. Ibid. 17.  T. Regan, Empty Cages: Facing the Challenge of Animal Rights (Rowman & Littlefield, 2012). 18.  B. E. Rollin, The Unheeded Cry: Animal Consciousness, Animal Pain and Science (Oxford University Press, 1989). 19.  I. J. Makowska, and D. M. Weary, “A Good Life for Laboratory Rodents?,” ILAR Journal 60, no. 3 (2019): 373–88. 20.  R. Hursthouse, Ethics, Humans and Other Animals: An Introduction with Readings (Routledge, 2013). 21.  L. Gruen, Entangled Empathy: An Alternative Ethic for Our Relationships with Animals (Lantern Books, 2015). 22.  M. Springmann et al., “Options for Keeping the Food System within Environmental Limits,” Nature 562, no. 7728 (2018): 519–25.

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Index A1c tests, 223 ability to pay principle, 384–85 ableism, 205, 208 abnormality, 104 abortion, 13, 27 accommodation, consequences of, 90 accountability, 70 ACE2, 394 acetaminophen, 218 achievement-based authenticity, 347 Act on the Secondary Use of Health and Social Data, Finland, 323 act utilitarianism, 28 Adams, James, 107 adaptation, to climate change, 382 Addelson, Kathryn Payne, 196 addiction, 224 advance directives, 58 African Americans, 111, 119, 121–22 age discrimination, in Covid-19 pandemic, 235 aggregation bias, 110 agriculture, climate change and unsustainability of, 280 AI. See artificial intelligence Aikens, Charlotte A., 376 alcohol, 80 algorithmic bias, 110–13 all-or-nothing assessment, 55 Allport, Gordon, 377 Alphafold, 112 amenorrhea. See functional hypothalamic amenorrhea amenorrhea oligomenorrhea, 353–54 American Academy of Pediatrics, 303, 304 American Medical Association, 89 American Speech-Language-Hearing Association, 50n64 Amoore, Louise, 325 anabolic-androgenic steroids, 341 analytic health care, 25 ancient Romans, 84 Anderson, Jami, 41, 42 anencephaly, 38 angioplasty, 194, 196 animal ethics, 10; feminism and, 399

animal experimentation, 10; combination of views on, 399–400; consequentialism on, 393–96; deontology and, 396–98; justifications for, 393–95; opposition to, 393–94; prevalence of, 392; Singer, P., on, 397–98; utilitarianism on, 393–94, 395–96; virtue ethics on, 398–99 Animal Liberation (Singer, P.), 12, 395 animal rights, 397–98 Animal Welfare Act, 393 anorexia, 45–46, 354 anthropocentrism, 388 anti-natalism: climate change and, 279–80; coercion and, 273–74; consumption regulation vs., 285–86, 289; costeffectiveness of, 273; defining, 270–71; interventions, 271; objections to, 274–75; overpopulation, 280–83; social policies, 270–72, 286 antipaternalism: consequentialist, 74, 76–77; of Mill, 75–76; motive-based, 74, 79–81; sovereignty-based, 74, 77–79 anti-patriarchy measures, 271, 272 Anzalduá, Gloria, 260 Appelbaum, Paul S., 55 applied ethics, 1 Archard, David, 254 Aristotle, 29, 69, 398 Armstrong, Thomas, 38–39, 40 Arson case, 46–47 ART. See Assisted Reproductive Technology artifacts, 203n20 artificial intelligence (AI), 110–13; autonomy and, 332–33; in clinical decision support systems, 329–30; in datadriven research, 329–30; ethical concerns about, 330; explainability of, 334–35; future of, 335–36; health care professionals impacted by, 332–33; in image-driven diagnostics, 329; machine learning and, 336n2; medical, 329; non-symbolic, 328; privacy and data protection, 330–32; responsibility and, 333–34; retribution gaps and, 333–34; symbolic, 328 Ashley Treatment, 210 Asperger’s Syndrome, 46–47 assisted insemination, 260 Assisted Reproductive Technology (ART): defining, 260– 61; history of, 261; LGBTIQ people and, 262–66; queer people and, 261–66; reproductive justice and, 265–66; 403

standardization, 263; stratified reproduction, 264, 266; transgender people and, 261–66 atheism, 301 attention-deficit disorder, 39 attributability, 70 authenticity: achievement-based, 347; autonomy-based, 346; defining, 346; PEDs and, 346–47; true-self version of, 346–47 authority, 59, 265 autism, 39–40, 42, 45; de-pathologizing, 36–37; genetic markers, 49n12; legal cases involving, 46–47; MMR vaccine and, 244 autism rights movement, 36–37 Autogen, 324 autonomy, 56, 63, 100, 149, 152, 187, 266; AI and, 332–33; authenticity and, 346; concepts of, 62–69; defining, 64, 77–78; as freedom of choice, 64–65; of health care professionals, 332; paternalism and, 75, 78; PEDs and, 343–45; philosophical concepts of, 65–66; political analogy for, 78; prioritizing, 68–69; procedural, 67–68; relational, 66–67; relational conceptions of, 59; sovereignty-based antipaternalism and, 77–79; substantive, 67–68; vaccinations and, 242; vulnerability and, 154 “Autonomy and Responsibility” (Dive), 100 Baartman, Sara, 119–20 baby bonuses, 271 bad organs, 174 Bagnoli, Carla, 152 balancing strategies, 79 Barnbaum, Deborah, 44 Barnes, Elizabeth, 43–45, 211 basic health, 141 Bassolino, M., 201–2 Bayne, Tim, 253 Beauchamp, Tom, 1, 31, 64, 65, 67, 266; on common morality, 30 Belarus, 350, 354 Belmont Report, 63 Benatar, David, 270 beneficence: enforced, 147; in pain medicine, 221–22; principle, 20; Principle of Beneficence, 57 beneficiary pays principle, 384–85 Benn, Stanley I., 65 Bentham, Jeremy, 12–13 Berg, Henrik, 99 Bernard, Claude, 17 Best Interests Standard, 54, 57 best option reply, 176 biased data, 111; on cognitive difference, 118–20; cultural and structural sources of, 122–24; in reproductive research, 120–22. See also specific topics big data: privacy and, 330–31; proponents of, 320 biobanks, 320 404 

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  I ndex

biodiversity framework, 36, 38–41 bioethics, 149; alternative approaches to, 31–33; consequentialism and, 28; defining, 1, 8–9, 206; deontology and, 28; ethics and, 2; feminist, 263; foundational theories in, 29–30; four principles approach to, 2, 376; four principles of, 374; history of, 374; interdisciplinary nature of, 3; mid-level principles of, 30–31; moral consideration in, 8–11; virtue ethics and, 29 bipolar disorder, 38 black box problem, 112–13 black market, for organ transplantation, 171–72, 175–76 blogs, medical professionals on, 350 Bloomberg, Michael, 160 Blume, Harvey, 39 Blustein, Jeffrey, 253 Boonin, David, 387 Boorse, Christopher, 43, 141, 146; on disease, 17–18; on illness, 18; on naturalist view, 19–20 Boydell, Victoria, 263 Brady, Ellen, 355 brain, understanding, 364–65 brain imaging: discrimination and, 365; neuroethics of, 364–65 brains, changing, 365–66 Brake, Elizabeth, 253–54 Bramble, Ben, 236 broad consent, 322 Brock, Dan, 55, 59 Broome, John, 385 Bruce, Lori, 109 Buchanan, Allen, 55, 145, 146–47 Bueter, Anke, 99 Buss, Sarah, 57 Butler, Pressing, 265 CA. See conversational agents Campbell, Stephen, 208 Campbell, Tom, 252 Canada, 78–79 Canadian Criminal Code, 188, 190 Canadian Pediatric Society, 303 Cannon, Walter, 17 Capers, Quinn, 106 capitalism, in Russia, 353, 357 Caplan, Arthur, 242 carbon capture, 279 carbon dioxide, 381. See also greenhouse gas emissions carbon footprints, 386; reduction of, 279 Card, Robert, 89 cardiology: extension of, 201–2; techno-cognition in, 196–200 Carel, Havi, 18, 95, 99 Carges, Jessica, 160 Carney, Scott, 171

casuistry, 31–32 categorical imperative, 28–29, 396–97; suicide and, 191n9 categorization issues, scientific bias and, 103–5 causal responsibility, 69; in parenthood, 253 CDS. See continuous deep sedation censorship, in Russia, 352 Chad, 278–79 challenge trials, vaccination, 241–42 Chalmers, D. J., 204n39 Chapman, Robert, 37–38, 43, 106 Charland, Louis C., 56 Chattopadhyay, Subrata, 30 Chavkin, W., 90 Chen, Qihui, 292n15 childbirth, 19; rates, 33; regulation of, 255. See also antinatalism; parenthood; pro-natalism children: informed consent and, 307–8; obligations to, 251–52; rights of, 298–99; right to, 255–56 Childress, James, 64, 65, 67, 266; on common morality, 30 China: population growth in, 277–78; poverty in, 284 Cho-Glueck, Christopher, 105 choice architecture, 159–60 Cholbi, Michael, 85 Christianity, 13, 297 Christman, John, 66, 67 chronic fatigue syndrome, 19–20 chronic pain management, 225 circumcision: benefits and harms of, 300–302, 303–5; best interests approach to, 301–2; cultural perspectives on, 295–98; defining, 299–300; gender and, 309–10; HIV transmission and, 303; medical focus on, 302–3; as medical necessity, 300, 308–9; patterns of, 298–99; timing of, 305–6; transgender people and, 299–300 Clare, Eli, 210 Clark, A., 204n39 climate change, 278; ability to pay principle, 384–85; adaptation to, 382; agricultural unsustainability and, 280; anthropocentrism towards, 388; anti-natalism and, 279–80; beneficiary pays principle, 384–85; collective responses to, 382–85; compensation to, 382; consequentialism on, 385; environmental effects of, 381–82; individual obligations and, 385–86; mitigation of, 382; non-identity problem in, 386–87; polluter pays principle, 384; WHO on, 381 clinical decision support systems, AI in, 329–30 clinical reasoning, 109 clinician-patient relationship, pain medicine and, 222–23 cloud ethics, 325 Coale, Ansley, 278 coercion, 287; anti-natalism and, 273–74; PEDs and, 344–45 cognitive bias, 107–9, 284; in radiology, 199 cognitive differences, biased research on, 118–20 cognitivism, 199 Cohen, G. A., 143 collective action problems, 286–89; climate change, 382–85

College of Physicians and Surgeons of Ontario (CPSO), 188–89 Collins, Patricia Hill, 119 commodification, in organ markets, 177, 184n99 common morality: Beauchamp and Childress on, 30; defining, 30; globalization and, 31 compensation, to climate change, 382 compromises, conscientious objection and, 90 computed tomography (CT), 197–98 conceptual choices, health and, 18–20 confidentiality, 331 conflicts of interest, in pain medicine, 223–24 Conly, Sarah, 68, 288 conscience: defining, 85; freedom of, 86–87 conscientious objection: compromises and, 90; defining, 84; equity and, 87–88; genuineness and, 88–89; health care professionals on, 89–90; reasonability and, 88–89 consequentialism, 108; on animal experimentation, 393–96; bioethics and, 28; on climate change, 385 consequentialist antipaternalism, 74 conspiracy theories, 81 consumption, 283–86; anti-natalism vs. regulation of, 285–86, 289; reduction of, 285; unethical, 283 continuous deep sedation (CDS), 189–90 contraception, 271–72 control condition, 69 conversational agents (CA), 330 Cooper, Rachel, 18 Copenhagen, 33 Covid-19 pandemic, 97–98, 143, 230, 350, 394; age discrimination in, 235; case-fatality ratios of, 231; in health system, 231–32; individual freedom in, 237; JCVI on, 244; lockdowns in, 233, 236–37; outcomes, 236; prioritarianism in, 232–34; resource allocation in, 207, 231–37; school closures in, 234–35; societal resources in, 234; technology in, 378–79; tracing apps in, 237; triage, 231–32; vaccination in, 236. See also long Covid Cowan, Ethan, 239n20 Cowley, Christopher, 87–88 CPSO. See College of Physicians and Surgeons of Ontario Creel, Kathleen, 110–11 CRISPR-Cas9 gene-editing tool, 112, 138–39, 210 critical data studies, 321 critical disability theory, 206 critical interests, 60; dignity as, 190 Croskerry, Pat, 109 crowding out thesis, 174–75 CT. See computed tomography the cure, ideology of, 210 current markets, 172–73 Cuvier, George, 119 Daniels, Norman, 3, 74, 141, 145, 146, 147 Danish Medical Association, 303 Danish Trial Nation, 325 I ndex 

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  405

Darwin, Charles, 41, 119 DasGupta, Partha, 286 “A Dash of Autism” (Anderson), 41 data collection: in Denmark, 323–26; in Finland, 323–26; informed consent in, 322–24; in Nordic countries, 320; on social media, 320; spaces, 321–22; state initiated, 323; testbed nations in, 324–26 data-driven research, AI in, 329–30 data ecosystems, 325–26 data ethics, 321 data fundamentalism, 330 data protection, AI and, 330–32 data security, 331 DBS. See deep brain stimulation DEA. See Drug Enforcement Administration death, 10–11 decision-making, 32, 109, 328; capacity, 54–56; incapacity, 54–56; iterative, 67; orthodox views on, 59–60; shared, 101; standards, 58–59; unilateral, 101 decision relativity, 55 Declaration of Geneva, 62, 86 Declaration of Helsinki, 392 Declaration of Istanbul, 171 deep brain stimulation (DBS), 366–67 DeepMind, 112, 332 Degrazia, David, 31 dementia, 208 Denmark, data collection in, 323–26 Deomampo, Daisy, 263 deontology: animal experimentation and, 396–98; bioethics and, 28; nursing ethics and, 375 dependency, 155 deployment bias, 110 depression: epistemic injustice and, 96; treatment, 366 Descartes, René, 392 desirable health care, 90 desire-satisfaction theories, 21 determinism, 69 De Vries, Raymond, 30–31 Dhairyawan, Rageshri, 99 diachronic responsibility, 71 Diagnostic and Statistical Manual of Mental Disorders V (DSM-V), 36, 42, 48, 104 diagnostic mistakes, 112 dictation, 198 difficult patients, 107 digital domain, 11 dignity, as critical interest, 190 Dijkstra, Pia, 191 disability, 35, 42; critical disability theory, 206; defining, 50n54, 205; eugenics and, 208–9; exploitation of, 211; intellectual, 363; lives worth living and, 208–9; medical intervention and, 209–11; medical model of, 205; political/relational model, 211; prevention of, 210; reframing, 211–12; social model of, 43 406 

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  I ndex

disease: Boorse on, 17–18; defining, 16–18, 104; naturalist view of, 17, 104 disordered, 35 distributive justice, 140; health care rights and, 144–46; vaccination and, 242–43 Dive, Lisa, 100, 265 diversity, 3 Doctor Informed Consent, 74 Dodds, Susan, 150–51, 154 dokaztel’naia meditsina. See evidence-based medicine Donchin, Anne, 66 “Don’t Mourn for Us,” 41 doping. See performance-enhancing drugs Dow, Katharine, 263 Down syndrome, 44, 100 Draize testing, 395 Drug Enforcement Administration (DEA), 227 drug overdose, 220 DSM-V. See Diagnostic and Statistical Manual of Mental Disorders V Du Bois, W. E. B., 119 Dumont, Isabelle, 89 Dutch Criminal Code, 188 duties, 28–29; of pain alleviation, 221; vulnerability and allocation, 153–54 Dworkin, Gerald, 75 Dworkin, Ronald, 60, 65, 66, 67, 190 dyadic responsibility, 71 dynamic consent, 322 dysfunctioning, 35, 39, 43 EBM. See evidence-based medicine ECG, 197 economic development, 290n2 education: family size and, 291n14; pain medicine and, 225 Edwards, Craig, 48 EEG. See electroencephalogram egalitarianism, in pandemics, 232 Einstein, Albert, 195 electroencephalogram (EEG), 105 emergent bias, 110 empathy, 399 empirical knowledge, incompleteness of, 195 empirical nursing ethics, 376–77 Empty Cages (Regan), 397 endocrinology, 354, 355 endometriosis, 98; epistemic injustice and, 95–96 endosex people, 299, 309–10 enforced beneficence, 147 Enoch, David, 80 Entangled Empathy (Gruen), 399 environmental vandalism, 283 epistemic choice, 45 epistemic condition, 69, 70 epistemic diversity, 202

epistemic injustice: ameliorative strategies, 99–101; defining, 94; depression and, 96; endometriosis and, 95–96; harms of, 98–99; long Covid and, 97–98; in medical community, 98–99; obesity and, 97; pain medicine and, 222 EPO. See erythropoietin EQ-5D, 23 equity, conscientious objection and, 87–88 erythropoietin (EPO), 342 ethics: bioethics and, 2; neuroscience of, 368–70; normative, 2; teaching, 106. See also specific topics EU. See European Union eudaemonia, 29 eugenics, 119; disability and, 208–9 European Commission of Human Rights, 87 European Convention on Human Rights, Article 9, 87 European Court of Human Rights, 87, 262 European Union (EU), 170 euthanasia, 3 evaluation bias, 110 evidence-based medicine (EBM): hierarchy of evidence in, 357n2; in Russia, 350–51 evolutionary biology, 17, 195 exercise, 23 experientalist theories, 21 experiential information online, 356 experiential interests, 60 exploited labor, 283 The Extended Mind (Clark & Chalmers), 204n39 Eyal, Nir, 242 Facebook, 323–24, 331 facilitated communication (FC), 50n64 factory farming, 400 fairness, PEDs and, 345–46 FAIR principles, 321 false-negatives, 112 false-positives, 112 family planning, 271–72, 287–88 family relationships, nursing ethics and, 378 family reward model, 172–74, 182n54 fat phobia, 97 faulty interpretations, 200 Fausto-Sterling, Anne, 120 FC. See facilitated communication feedback loops, 111–12 Feinberg, Joel, 78, 81, 251 feminism, 59, 149; animal ethics and, 399; bioethics and, 263. See also gender feminist bioethics, 32–33 fertility, 272, 290n5, 292n6; control of, 270; reductions of, 275, 278 fetal neglect, 252 fetus, moral status of, 13 FHA. See functional hypothalamic amenorrhea

field-specific ability beliefs, 124 Findata, 323 Finland, data collection in, 323–26 first-order preferences, 56–57 FitzGerald, Chloë, 106 Flanigan, Jessica, 245 fMRI. See functional magnetic resonance imaging Fomin Clinic, 354 food insecurity, 281–82, 284 football, 343 foot binding, Chinese, 298 foreskin, 296, 303–4 Fort, Margherita, 290n6 foundational theories, 28–29; in bioethics, 29–30 401k contributions, 163 Fourcade, Marion, 320 four principles approach, 374, 376 Fowler, Martha, 375 France, 189–90 Frank, Arthur, 377 Frank, Lone, 324–25 Frankfurt, Harry, 65, 66, 67 Franklin, Sarah, 267 freedom, individual, in Covid-19 pandemic, 237 freedom of choice, autonomy as, 64–65 Freeman, Lauren, 95 free ride argument, 245 Freidenfelds, Lara, 353 Freud, Sigmund, 195, 352 Fricker, Miranda, 94 Friedman, Batya, 110 Fu, Steven S., 106–7 functional hypothalamic amenorrhea (FHA), 353–55; recovery, 356–57, 360n50 functional magnetic resonance imaging (fMRI), 364, 369 fundamental conditions approach, 141 futures markets, 172–73 fuzzy nudges, 160 Gaia-hypothesis, 9 GAIA-X, 321–22 Gallagher, S., 201–2, 367 Galton, Francis, 119 Gamble, Eliza Burt, 119 Gard, Charlie, 378 Garland-Thomson, Rosemarie, 211 GBD. See Global Burden of Disease GDPR, 332 gender, 119; circumcision and, 309–10; culturally binary, 299; neuroethics and, 368; STEM fields and, 123–25 General Data Protection Regulation, 237 genetic testing, 209–10 genital cutting, 297 genuineness, conscientious objection and, 88–89 geoengineering, 383, 387–88 I ndex 

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  407

George, Alex, 350 Gerland, Patrick, 292n18 gestalt, 199 gestational surrogacy, 261, 264 Gilbert, Frederic, 366 Gilligan, Carol, 376 Ginsburg, Faye, 211 Ginsburg, Ruth Bader, 123 Glasgow Conference, 388 glasnost, 352 Global Burden of Disease (GBD), 23 Global Financial Integrity, 171 Global Fund, 236 Global Health Security Index, 231 globalization, common morality and, 31 global positioning system (GPS), 237 GnRH. See gonadotropin-releasing hormone Goddard, Eliza, 367 Gödel, K., 194, 196 Goering, Sara, 207 Goldenberg, Maya, 246 gonadotropin-releasing hormone (GnRH), 354 Goodin, Robert E., 150, 152, 153 Goodkind, Daniel, 292n18 Google, 110 Google Health, 332 Gordon, Jeffrey, 320 Gould, Stephen J., 119 GPS. See global positioning system Graboyes, Robert, 160 Grandin, Temple, 40 Grant, Monica J., 291n9 Greece, 243 Greene, Joshua, 369–70 greenhouse gas emissions, 279, 285; harms from, 385; population growth as cause of, 383 Grisso, Thomas, 55 Groll, Daniel, 75, 80 Groningen Protocol, 186 growth hormone, 341 Gruen, Lori, 399 Gunter, Jen, 350 Gusev, Dmitrii, 354–55 Guttag, John, 110 gynecology, 121; in Russia, 353–56 de Haan, Monique, 366 HAES. See health at every size approach Haggendorf, Thilo, 331 Haidt, Jonathan, 369, 370 Hall, Melinda, 210 Hampshire, Kate, 261 Haraway, Donna, 267 hard paternalism, 78 harm: defining, 146; prevention of, 147 408 

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  I ndex

harmful dysfunction, 43 harmful sports, 343 Harris, John, 161, 207 Hassoun, Nicole, on health care rationing, 142 Hawkins, Jennifer, 56, 57 health: conceptual choices and, 18–20; defining, 16–18; naturalist views on, 17–18; normative approach to, 17; well-being and, 20; WHO on, 17 health, right to, 141–43 health assessment, 22–24 health at every size approach (HAES), 355 health care discrimination, disability and, 206–8 health care professionals: AI impacting, 332–33; autonomy of, 332; on conscientious objection, 89–90 health care rationing: Hassoun on, 142–43; Sreenivasan on, 142 health care rights, 141–43; decent minimum of, 144–46; decent minimum without, 146–47; distributive justice and, 144–46; skepticism towards, 140–41 health inequities, pain medicine and, 222 Health Utilities Index (HUI), 23 hedging, 198 hedonism, 21–22 Heggen, Kristin Margrethe, 99 Heidegger, Martin, on understanding, 196 herd immunity, 144 hermeneutical injustice, 95 hermeneutics, 197 Herrin, Marcia, 356 hesitancy: epistemic, 245–46; ethical, 245–46; vaccination, 245–46 heuristics, 107–9, 159, 335; defining, 109 hidden curriculum, 105–7, 109 hierarchies of difference, 118–20 Hill, John Lawrence, 255 Hippocratic Oath, 74, 86 Hippocratic school, 17 historical bias, 110 HIV, 236; circumcision and transmission of, 303 Hofmann, Bjørn, 103–4 holism, 22, 25 Holm, Søren, 185 homeostasis, 17 homosexuality, 42, 47, 146, 264. See also LGBTIQ people; queer people hormone-replacement therapy (HRT), 354 Horn, Ruth, 192n19 Hottentot Venus, 119–20 HPV vaccine, 247 HRT. See hormone-replacement therapy Hughes, Jonathan, 44 HUI. See Health Utilities Index human life, 9–10 human nature, 362 human rights, overpopulation and, 288

Hungary, 150 Hurst, Samia, 106 Huxley, Aldous, 105 hypersexuality, 366 Iakovleva, Daria, 354 IASP. See International Association for the Study of Pain ibuprofen, 218 ice skating, 343 ICSI. See intracytoplasmic sperm injection identity framework, 36, 38, 41–44 ignorance, veil of, 134–35 illness: Boorse on, 18; defining, 16–18, 104; phenomenology of, 18 ILO. See International Labour Office image-driven diagnostics, AI in, 329 impairments, 39 impartiality, 20 implicit bias, 105–7 impulse control, 346 Inception V3, 110 India, 171 individual freedom, in Covid-19 pandemic, 237 individualism, 31 infibulation, 301 influenza, 230 informed consent: children and, 307–8; in data collection, 322–24; defining, 331; privacy and, 331 injustice: hermeneutical, 95; testimonial, 95. See also epistemic injustice Instagram, 331, 356; medical professionals on, 350; in Russia, 350–51 institutional bias, 123 insurance industry, pain medicine and, 224–25 Insys Therapeutics, 223–24 integrity, 87–88 intellectual disability, 363 intelligent saints, 375 intentionality, 64; in parenthood, 255 Intergovernmental Panel on Climate Change (IPCC), 279–80, 381 internalized oppression, 59 International Association for the Study of Pain (IASP), 219 International Code of Medical Ethics, 62 International Covenant on Civil and Political Rights: Article 18(1)1, 86; Article 18(3)1, 87 International Labour Office (ILO), 291n11 International Society of Nephrology, 171 interpretation, 196–97; faulty, 200 intersex people, 262, 299, 309–10 intracytoplasmic sperm injection (ICSI), 261 Intuitive Eating (Tribole & Resch), 355–56 in vitro fertilization (IVF), 261 IPCC. See Intergovernmental Panel on Climate Change Iran, population growth in, 277–78

Islam, 295 IVF. See in vitro fertilization Jaarsma, Pier, 44 Jackson, Jake, 96 Jackson, Philip Wesley, 106 Jacobs, Barry H., 170 Jaworska, Agnieszka, 57 JCVI. See Joint Committee on Vaccination and Immunisation Jehovah’s Witness, 76, 317n89 Jenkins, Pinar, 233–34 Jevon’s paradox, 285 Johnson, Harriet McBryde, 208 Joint Committee on Vaccination and Immunisation (JCVI), 242; on Covid-19, 244 Jones, C. E., 96 Jones, Kerina H., 322–23 Kafer, Allison, 211 Kahneman, Daniel, 108 Kamasutra, 352 Kant, Immanuel, 28–29, 62, 63, 67–68, 191n9, 208, 396–97 Kantymir, L., 88 Kapoor, John, 224 Katz, Nachum, 47 Kaushal, Amit, 111 Kidd, Ian James, 95, 99 Kittay, Eva, 153, 208, 210 Knight, Amber, 100 Koestler, Arthur, 195 Koplin, Julian, 176 Kourany, Janet, 120 Kozuki, Naoko, 291n13 Kukla, Rebecca, 252 Kuraev, Andrej, 352–53 Kurkulmus, Faik, 100 learning bias, 110 Lee, Alice, 119 Lee, C. S., 199–200 legacy patients, 221 LeGrand, Thomas, 290n5 leptin, 354 Leslie, Sarah Jane, 123–24 Letter Concerning Toleration (Locke), 87 Levy, Neil, 68 Lewis, Jonathan, 58 LGBTIQ people, 260; ART and, 262–66 Liao, Matthew, 141, 145, 210 libertarianism, 154; benevolence, 165n22; paternalism and, 159, 163; Thaler and Sunstein on, 159 liberty: principle, 134–36; reproductive, 255–56 life evaluations, 24 Linden, David J., 199 I ndex 

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  409

lived experience, 33–34 lives worth living, disability and, 208–9 living things, moral status of, 9–10 Lloyd, Elisabeth, 105, 120 Locke, John, 87, 89, 254 logical empiricism, 195 Logic of Research Questions, 120 Lombroso, Cesare, 352 long Covid, epistemic injustice and, 97–98 Lupas, Andrei, 112 lying, 364–65 MacCAT-T, 55–56 machine learning, AI and, 336n2 Mackenzie, Catriona, 150–51, 154 Macklin, Ruth, 239n20 MacLure, Jocelyn, 89 Madaras, Lynda, 352 Mädchen (Schuster), 352 magnetic resonance angiography (MRA), 197–98 magnetic resonance imaging (MRI), 197–98, 329; functional, 364, 369 malaria, 236 Manson, Neil C., 66 Marks, Joel, 396 mass extinction, 282 Maung, Hane, 192n22 Mbembe, Achille, 264 McKay, Anita, 252 McLeod, Carolyn, 85, 88 McMahan, Jeff, 60, 208, 210 MDDS. See mitochondrial DNA depletion syndrome Measles, Mumps, and Rubella (MMR) vaccine, autism and, 244 measurement bias, 110 meat, 400 Medicaid, 136 medical administrative forms, 263 medical approach, 43 Medical Assistance in Dying, 187 medical community, epistemic injustice in, 98–99 medical interests, 76 medicalization, 17 Medicare, 136 medicine and health care services (MHCS): egalitarian approach to, 132–33; foundations of, 130–32; future of, 138–39; political communities and, 132; priority setting and, 136–37; rationing, 131; Rawls and, 134–36; sufficientarian approach to, 132–33; traditional allocation approaches, 132–34; utilitarian approach to, 132–33; variance of use of, 130–31 memory, 199 Ménard, 164–65 menstruation, 356–57; Russian policy on, 351–52 Mental Capacity Act, 54–56, 58 410 

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  I ndex

mental illness, 96 mentalist theories, 21 Metcalf, Jake, 323 methodology, 202n1; of science, 195 MHCS. See medicine and health care services mid-level principles, of bioethics, 30–31 Mid-Staffordshire Hospital Inquiry, 378 Mill, John Stuart, 63, 191n8; antipaternalism of, 75–76; on autonomy, 64 Miller, Joshua, 100 Millum, Joseph, 254 Minich, Julia Avril, 212 misinformation about, vaccination, 245–46 missed diagnosis, 112 mistaken nudges, 160 mitigation, of climate change, 382 mitochondrial DNA depletion syndrome (MDDS), 378 MME limits, 225 MMR. See Measles, Mumps, and Rubella vaccine Modafinil, 341 Monbiot, George, 284 Moore, Francis D., 172 moral consideration, in bioethics, 8–11 moral dilemmas, 369 moral domain, restriction of, 11–12 moral dumbfounding, 369 moralized indifference, 274–75, 289 moral responsibility, 69; in parenthood, 253 moral status: defining, 9, 12–13; derivative approach to, 11; in digital domain, 11; of fetus, 13; of living things, 9–10; of non-human animals, 9–10 Morley, Jessica, 237 motive-based antipaternalism, 74, 79–81 MRA. See magnetic resonance angiography MRI. See magnetic resonance imaging Multiple Risk Factor Intervention Trial, 122 Murphy, Dominic, 48 Murray, Robert, 107 MyData, 321 Myers, C., 88 “The Myth of the Normal Brain” (Armstrong), 38–39 Nagel, Ernst, on science, 194 Narain, Kimberly Danae Cauley, 162 National Black Woman’s Health Project, 265 National Institutes of Health (NIH), 122 National Organ Transplant, 170–71 national resources, marketing of, 326 naturalist view: Boorse on, 19–20; of disease, 17, 104; as reductionist, 19 naturalist views, on health, 17–18 natural language processing (NLP), 330 natural language understanding (NLU), 330 natural science research, 194 Nazi Germany, 84

necropolitics, queer, 264–65 Negro problem, 119 Nelson, Ryan, 44 neo-Kantianism, 67–68 Netherlands, 191 neurodiversity: concept, 37–38; conservative conception of, 40; defining, 35, 37–38; limits of, 44–48; origin of concept of, 36–37; revisionist conception of, 40; strengths in, 39 neuroethics: of brain imaging, 364–65; of brain research, 364–65; challenges in, 363; of DBS, 366–67; defining, 362; gender and, 368; neuroscience of ethics, 368–70; public perceptions of, 367–68; research ethics, 363–64 neuroscience, 362–63; ethics of research in, 363–64 neurosexism, 368 neurotechnology, 362 New Kinship Studies, 261 NIAID, 394 Nickel, James, 145 Niger, 278–79 NIH. See National Institutes of Health NIH Revitalization Act, 122 Nissenbaum, Helen, 110 nitrous oxide, 293n36 NLP. See natural language processing NLU. See natural language understanding Noë, A., 201 Nolt, John, 385 noncontrol, 64–65 non-human animals, moral status of, 9–10 Non-identity Problem, 386–87 non-maleficence: in pain medicine, 221–22; vaccinations and, 242, 244–45 non-participation, rights to, 188–89 non-sequiturs, 39 non-symbolic AI, 328 normality, 104 normal species functioning, 145–46 normative competence, 67 Nozick, Robert, 165n26 Nudge (Thaler and Sunstein), 157 nudges, 75; background assumptions of, 157–59; defining, 157; Econs and Humans in, 158–59; fuzzy, 160; limitations of, 159–61; mistaken, 160; public health and, 161–64; Thaler and Sunstein on, 160; in United Kingdom, 157 Nuremberg Principles, 393 nursing ethics, 1; deontology and, 375; empirical, 376–77; family relationships and, 378; normative, 375–76; organizational relationships and, 378; patient relationships and, 377–78; principles of, 374; rights theories and, 376; self-care and, 379; technology and, 378–79; utilitarianism and, 375; virtue ethics of, 375–76

Nursing Ethics, 374 Nutrition Counseling in the Treatment of Eating Disorders (Herrin), 356 obesity: epistemic injustice and, 97; in Russia, 355–56 objective list theories, 21 obligations, 250; to children, 251–52; climate change and, 385–86; of parenthood, 252–54 obsessive compulsive disorder (OCD), 39 ocean acidification, 383 O’Connor, Rory J., 235 OECD, 234 Olson, Mancur, 286 O’Neill, Onora, 63, 66, 254 On Liberty (Mill), 75 Ontario, 188–89 opioids, 218; crisis of, 220; policy on, 225; prescription reduction, 221–22; stigma of, 225 opt out solutions, 322 Oreskes, N., 193–94, 202 organ donation, 10, 136 organizational relationships, nursing ethics and, 378 organ markets, 172–74; bad organs in, 174; combination models, 180n35; commodification in, 177, 184n99; critiques of, 174–77; crowding out of, 174–75; current, 172; futures, 172; justice and, 177; sellers in, 175–77; unregulated, 172 organ transplantation, black market for, 171–72, 175–76 orthorexia, 354 Oshio, Takashi, 290n6 Ouellette, Alicia, 209 overdiagnosis, 112 overfishing, 281, 287 overpopulation: conceptualizing, 280–83; human rights and, 288; systemic risks from, 281–82 OxyContin, 223–24 PACS. See picture archiving and communication system PAD. See physician-assisted dying pain: defining, 219–20; duty of alleviation of, 221; as health crisis, 226; subjectivity of, 220; suffering and, 219–20 pain medicine: beneficence in, 221–22; clinical issues with, 220–22; clinician-patient relationship and, 222–23; conflicts of interest in, 223–24; education and, 225; epistemic injustice and, 222; ethics of, 226; health inequities and, 222; insurance industry and, 224–25; legacy patients, 221; non-maleficence in, 221–22; pharmaceutical industry and, 223–24; philosophical issues with, 219–20; policy on, 225; profitability of, 223–24; racism and, 222; responsibility and, 219; side effects, 218; stigma and, 222; stoic view on, 218–19; structural issues surrounding, 223–25 pain scale, 220

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  411

Pakistan, 171 pandemics: egalitarianism in, 232; preparedness for, 230– 31, 238; prioritarianism in, 232; resource allocation in, 231–37; sufficientarianism in, 232; warnings of, 230–31. See also Covid-19 pandemic parent-child relationships, 254–55 parenthood: causal responsibility in, 253; intentionality in, 255; moral responsibility in, 253; obligations of, 252–54; problem cases, 250; rights of parents, 254–55; stereotypes about, 251–52 Parfit, Derek, 386–87 Paris Agreement, 280, 382 paternalism, 21, 45–46, 74, 81; autonomy and, 75, 78; defining, 75–76, 83n29; hard, 78; libertarianism and, 159, 163; motivational component of, 75; soft, 78 patient encounters, 107 patient-physician interactions, 107 patient relationships, nursing ethics and, 377–78 pay-as-you-go pension schemes, 291n12 Payne, Jenny Gunnarsson, 266 Peace, William J., 209, 210 PEDs. See performance-enhancing drugs Peduzzi, Pascal, 284 Pellegrino, Edmund, 88 perestroika, 352 performance-enhancing drugs (PEDs), 340; authenticity and, 346–47; autonomy and, 343–45; as cheating, 345– 46; coercion and, 344–45; cognitive enhancements, 341; ethical issues, 341; fairness and, 345–46; health impacts of, 342–43; legalization of, 342–44, 346–47; physical enhancements, 341; social pressure for use of, 344 peripersonal space (PPS), 204n35 permissibility, 45 Persad, Govind, 232 pervasive bias, 118 PET. See positron emission tomography Peterson, Martin, 243 Peterson, Michael Nebeling, 265 pharmaceutical industry, pain medicine and, 223–24 phenylketonuria (PKU), 323 Philippines, 171 philosophy of medicine, 1 phronesis, 376 PHS. See Public Health Service physician-assisted dying (PAD), 185–86; defining, 186; function of medicine in, 189–90; opinions on, 191n2; rights to, 187–88 physician expertise, 111 physician-instigated dying, 186 picture archiving and communication system (PACS), 198, 200–201, 203n18 The Pillars of Unwisdom (Koestler), 195 PKU. See phenylketonuria Plato, 17 pluralism, 13, 32 412 

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political communities, MHCS and, 132 political/relational model, 211 polluter pays principle, 384 population deflection, 274 population denial, 274–75 population growth, 289, 292n18; in China, 277–78; current trajectory of, 275–79; demographic momentum in, 276– 77; greenhouse gas emissions caused by, 383; in Iran, 277–78; policies, 290n1; pro-natalism and, 278; United Nations on, 275–76, 276; unsustainability of, 279–80 population momentum, 276–78 Porter, Lindsey, 253 positivism, 195, 196 positron emission tomography (PET), 197–98 poverty, in China, 284 PPS. See peripersonal space practical ethics, 1, 3 Practical Ethics (Singer, P.), 1, 208 preexisting bias, 110 pregnancy, 19 primary goods, health as, 145 Principle of Beneficence, 57 Principles of Biomedical Ethics (Beauchamp & Childress), 1, 57, 266 principlism, critiques of, 30–31 prioritarianism: in Covid-19 pandemic, 232–34; defining, 232; in pandemics, 232; social justice, 232 privacy: AI and, 330–32; big data and, 330–31; informed consent and, 331 procedural autonomy, 67–68 professionalism, 85–86 prognostic mistakes, 112 pro-natalism, 271; population growth and, 278; religion and, 272; socially embedded nature of, 286 prudence, 147 Prusak, Bernard, 251, 253 psychopathy, 364–65 Puar, Jasbir, 264 public goods, 144, 245 public health, 24; nudges and, 161–64 public health ethics, 1 Public Health Service (PHS), 121 Pupkevich, Inna, 354 Purdue Pharma, 223–24 Putin, Vladimir, 353 QALYs. See quality-adjusted life-years Quakers, 84 quality-adjusted life-years (QALYs), 207 quality of life, 23–24 quality of well-being scale (QWB), 23 quality weights, 23 queering, 260 queer necropolitics, 264–65 queer people, ART and, 261–66

Queer theory, 260 question-begging, 43 questionnaire surveys, 377 Quong, Jonathan, 80 QWB. See quality of well-being scale racial difference, theories of, 119 racism, pain medicine and, 222 Radcliffe-Richards, Janet, 176 Radin, Margaret Jane, 177 radiological image analysis, 194 radiology, 329; cognitive bias in, 199; extension of, 201–2; techno-cognition in, 196–200 Radiology Information System (RIS), 198, 200, 203n18 randomized clinical trials, 325 rapid prompting method (RPM), 50n64 Rapp, Rayna, 211 rationality, 396–97, 398 Rawls, John, 3, 145; justice theorized by, 134–36; MHCS allocation and, 134–36 Raworth, Kate, 284 Raz, Joseph, 68 reasonability, conscientious objection and, 88–89 reasoning, 12 recidivism, 364–65 reckless deference, 45 red blood cells, 342 RED-S. See relative energy deficiency in sport reflection, 200 reflective equilibrium, 2–3 Regan, Tom, 397 regulated market reply, 176 relational autonomy, 66–67 relational ethics, 31 relative energy deficiency in sport (RED-S), 356 religion, 11–12; pro-natalism and, 272 representation bias, 110–11 reproductive justice, 265–66 reproductive liberty, 255–56, 288 reproductive research, biased data in, 120–22 Resch, Elyse, 356 research ethics, 10, 363–64 resource allocation: in Covid-19 pandemic, 207, 231–37; in pandemics, 231–37 responsibility, 81; AI and, 333–34; causal, 69, 253; diachronic, 71; dyadic, 71; moral, 69, 253; pain medicine and, 219; requirements for, 70–71 retribution gaps, 339n66; AI and, 333–34 reverse inferences, 364, 365 Rhodes, Rosamond, 244 rights theories, nursing ethics and, 376 Rinaldi, Nicola, 355 RIS. See Radiology Information System risk aversion, 137 Ritalin, 341

Rizzo, Mario J., 161 Robb, Isobel Hampton, 375 Rogers, Wendy, 150–51, 154 Rollin, Bernard, 399 Romoser, M., 49n12 Rosen, Leah Teresa, 99 Roskies, Adina, 362 Ross, W. D., 397 Roy, Claire, 210 Roy, Deboleena, 120 RPM. See rapid prompting method Rule of Rescue principle, 232 rule utilitarianism, 28 Russell, Bertrand, 196 Russia: capitalism in, 353, 357; censorship in, 352; EBM in, 350–51; experiential information online in, 356; gynecology in, 353–56; history of medical evidence in, 351–53; Instagram in, 350–51; menstruation and policy in, 351–52; obesity in, 355–56 Russian Orthodox Church, 353 van Ryn, Michelle, 106–7 Sandel, Michael, 177 Saposnik, 109 SARS-CoV-2, 394 Satz, Debra, 176 Savulescu, Julian, 210, 235, 251 schizophrenia, 38, 44, 45–46 Schmidt, Harald, 243 Schneewind, J. B., 63 school closures, in Covid-19 pandemic, 234–35 Schüpbach, Marya, 366 Schuster, Gaby, 352 science: defining, 194–95; diversity of practice of, 194–96; history of, 195; methodology of, 195; Nagel on, 194; natural, 194 scientific bias: categorization issues and, 103–5; defining, 105 second-order preferences, 56–57 self-care, nursing ethics and, 379 self-constituting vulnerability, 152 self-fulfilling prophecies, 112 self-governance, 63 self-killing, 187 self-learning algorithms, 328 self-legislation, 64 self-sovereignty, 78 Sellman, Derek, 376 Sen, Amartya, 281 Senegal, 290n5 sexual harassment, 95 sexuality, 42 shared decision-making, 101 Sheehan, Mark, 210 Shiffrin, Seana, 75, 79–80 I ndex 

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Shimazono, Yosuke, 171 sickness, defining, 104 sick role, 48 Simkulet, William, 42 Simpson, Bob, 261 Sims, Marion, 121 Sinclair, Jim, 36, 41, 42 Singer, Judy, 36 Singer, Peter, 1, 208, 395; on animal experimentation, 397–98 SisterSong, 265 Sitra, 325 skills, 200 slavery, abolitionism, 119 sleep/wake diversity, 35, 47 slow ethics, 377 snowboarding, 343 social determinants of health, 141 social justice, 267; prioritarianism, 232 social media, data collection on, 320 social model of disability, 43 soft paternalism, 78 solar radiation management (SRM), 383 the soul, 11–12 South Korea, 237 sovereignty-based antipaternalism, 74; autonomy and, 77–79 Soviet Union. See Russia Sparrow, Robert, 255–56 special rights, 147 speciesm, 12 sports, harmful, 343 Springmann, Marco, 381 Sreenivasan, Gopal, 144; on health care rationing, 141 SRM. See solar radiation management Stanovich, Keith E., 108 STEM fields, gender and, 123–25 stents, 197 stereotypes, 105–7; about parenthood, 251–52 sterilization, forced, 262 Sterri, Aksel Braanen, 172 stigma: of opioids, 225; pain medicine and, 222 Stöhr, Hermann, 84 Straehle, Christine, 152 Stramondo, Joseph, 208–9 stratified reproduction, 264, 266 subjectivity, 20–21 substantive autonomy, 67–68 Substituted Judgment Standard, 54, 56–58, 59 Subsys, 223–24 suffering, pain and, 219–20 sufficientarianism: on MHCS, 132–33; in pandemics, 232

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suicide, 187, 208; categorical imperative and, 191n9 Sulmasy, Daniel, 85 Sunstein, Cass, 157–58, 164, 165n22; on libertarianism, 159; on nudges, 160 Suresh, Harini, 110 surrogacy. See gestational surrogacy symbolic AI, 328 syphilis, 121–22, 393 System 1, 108–9 System 2, 108 systematics, 198 TB. See tuberculosis techno-cognition: in cardiology, 196–200; defining, 194; extension of, 201–2; in radiology, 196–200; trust and, 202 technological bias, 110 technological progress, 8 technology: in Covid-19 pandemic, 378–79; neurotechnology, 362; nursing ethics and, 378–79; objectivity of, 103. See also Assisted Reproductive Technology technoscience, medicine as, 193 TEHDAS, 321–22 telos, 398–99 testbed nations: in data collection, 324–26; defining, 325 testimonial injustice, 95 testosterone, 342 Thaler, Richard, 157–58, 164, 165n22; on libertarianism, 159; on nudges, 160 Theorem (Gödel), 196 A Theory of Justice (Rawls), 134–36 thick, 66 thin, 66 Thirty Years’ War, 89 thought-affecting properties, 44 threshold view, 60 Tonga, 324 topsoil loss, 293n39 Tour de France, 342 tracing apps, in Covid-19 pandemic, 237 Tractatus (Wittgenstein), 196 transgender people, 146–47, 260; ART and, 261–66; circumcision and, 299–300 transparency, 335 Transplantation Society, 171 treatment, refusal of, 345 Tremain, Shelley, 206, 211 Tribole, Evelyn, 356 true-self authenticity, 346–47 trust, techno-cognition and, 202 Tsunami Nagar, 171 tuberculosis (TB), 236 Tuskegee syphilis experiment, 121–22, 393

Tuvalu, 383 Twitter, 331 Ukraine, 350 ultrasonography, 329 uncertainty, 107–9 understanding, 64; Heidegger on, 196–97 Uniform Anatomic Gift Act, 170 United Kingdom, 233; nudging strategies in, 157 United Nations, 86; on population growth, 275–76, 276 United Nations Environment Programme, 284 unregulated markets, 172–73 urbanization, 290n2 urinary tract infections (UTIs), 304 utilitarianism, 19; act, 28; on animal experimentation, 393–94, 395–96; on MHCS, 132–33; nursing ethics and, 375; rule, 28 utility, maximization of, 393–94 UTIs. See urinary tract infections vaccination, 306–7; availability of, 241–42; basic rights, 246–47; best interests, 246–47; challenge trials, 241–42; Covid-19, 236; distribution of, 242–44; distributive justice and, 242–43; efficiency of, 242–43; equality of, 242–43; ethics of, 241; free-riding and, 245; hesitancy, 245–46; HPV, 247; misinformation about, 245–46; priority of, 242–43; refusal of, 244–47 vaccinations: autonomy and, 242; non-maleficence and, 242, 244–45 Vaginal Birth After Cesarean (VBAC), 111 Valdez, Natali, 263 value neutrality, 55 Vanuatu, 383 Varga, T. V., 235 VBAC. See Vaginal Birth After Cesarean Veatch, Robert M., 177 veil of ignorance, 134–35 Venereal Disease Research Laboratory, 122 Vienna Circle, 196 Vietnam, 292n15 Viner, Russell, 235 virtue ethics: on animal experimentation, 398–99; bioethics and, 29; of nursing ethics, 375–76 voluntarism, 253–54 voxels, 364 vulnerability: autonomy and, 154; as bad, 152–53; defining, 149–51; duty allocation, 153–54; as normative concept,

154–55; pathogenic, 151; situational, 151, 154; special, 150–51; universal, 150–52 Vyas, Darshali, 111 WADA. See World Anti-Doping Agency Wakefield, Jerome, 43 Walker, Nick, 37, 367 Wall, Steven, 77–78 WALY’s, 23 Wardrope, Alistair, 99 Warnock, Mary, 256 waste, 283 water shortages, 293n40 Watson for oncology, 111 Weinberg, Rivka, 253 WELBY’S, 23 Welin, Stellan, 44 well-being: competence, 22; defining, 20–22; health and, 20 Westlund, Andrea, 57, 108 Westoff, Charles, 290n4 What’s Happening with My Body? (Madaras), 352 Whitman, Douglas Glen, 161 WHO. See World Health Organization Wicclair, Mark R., 88 Wiener, Norbert, 196 Williams, Alan, 207 Williams, Serena, 120 Williams, Zoe, 350 Wittgenstein, Ludwig, 194–95, 200 Wong, Alice, 207–8 Woods, R., 88 workforce diversity, 87–88 World Anti-Doping Agency (WADA), 342, 344 World Bank, 275 World Health Organization (WHO), 98, 171; on climate change, 381; on health, 17 World Medical Association, 62, 86 World War II, 62 Wrigley, Anthony, 154 X-ray, 197–98, 329 Zemishlany, Zvi, 47 Zhenshchina v tserkvi (Kuraev), 353 Zimbabwe, 290n5 Zimmerman, Frederick J., 162 Zolf, Benjamin, 89

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List of Contributors Andreas Albertsen is associate professor at the Department of Political Science, Aarhus University and The Centre for the Experimental-Philosophical Study of Discrimination—CEPDISC, Aarhus University. Anna-Karin Margareta Andersson is a post-doctoral research fellow at the Department of Philosophy and the Arctic Centre for Sustainable Energy, The Arctic University of Norway. Teresa Baron is a Research Fellow at the University of Nottingham. Iain Brassington is a senior lecturer at the Centre for Social Ethics and Policy and Department of Law at the University of Manchester. Christopher ChoGlueck is assistant professor of Ethics at New Mexico Tech. Regina Christensen is a researcher in philosophy at the University of Southern Denmark. Vivian V. Altiery De Jesus, MD, MBE, is an intern at Johns Hopkins Bayview Internal Medicine Residency Program and an alum of the Johns Hopkins Berman Institute Master of Bioethics Program. Ezio Di Nucci is professor of bioethics and director of the Centre for Medical Science and Technology Studies at the University of Copenhagen. Lisa Dive is a lecturer in the Graduate School of Health at the University of Technology Sydney.

Brian D. Earp is senior research fellow in the Uehiro Centre for Practical Ethics at the University of Oxford and associate director of the Yale-Hastings Program in Ethics and Health Policy at Yale University and The Hastings Center. Søren Engelsen holds a PhD in philosophy and is a postdoc at the Centre of Health Promotion, Roskilde University, Denmark. Jan Kyrre Berg Olsen Friis is associate professor in medical philosophy of science and technology at the University of Copenhagen. Ann Gallagher is head of nursing and professor of care education, ethics and research at the University of Exeter, United Kingdom. Melinda C. Hall is associate professor and chair of philosophy at Stetson University, Florida. Paul Hamilton is an independent scholar who earned his doctorate from the University of Missouri. Jason Hanna is professor and chair in the Department of Philosophy at Northern Illinois University. Trevor Hedberg is assistant professor of practice affiliated with the W. A. Franke Honors College and the Philosophy Department at the University of Arizona. Stephen John is associate professor in philosophy of public health in the Department of History and Philosophy of Science, University of Cambridge. 417

Karin Jongsma is assistant professor of bioethics at the University Medical Center Utrecht.

Thomas Søbirk Petersen is professor of bioethics and philosophy of law at Roskilde University.

Yulia Karpova is a postdoc at the Department of Arts and Cultural Studies at the University of Copenhagen.

Costanza Porro is a British Academy postdoctoral fellow at MANCEPT, University of Manchester.

Søren Harnow Klausen is professor of philosophy and head of the Values, Welfare and Health program at the University of Southern Denmark.

Travis N. Rieder, PhD, is an associate research professor and the director of the master of bioethics degree program at the Johns Hopkins Berman Institute of Bioethics.

Nana Cecilie Halmsted Kongsholm is postdoctoral researcher at the University of Copenhagen and the National Institute for Public Health, University of Southern Denmark.

Eric Roark is a professor of philosophy at Millikin University, Illinois.

Karin Kuhlemann is a London-based population ethicist with degrees in law, political theory, and biology.

Martin Sand is assistant professor of ethics and philosophy of technology at Delft University of Technology, Netherlands.

Richard Lauer is a lecturer in the philosophy department at Saint Lawrence University in Canton, New York.

Udo Schuklenk is the Ontario research chair in the Department of Philosophy at Queen’s University at Kingston, Ontario, Canada.

Ji-Young Lee is a postdoctoral researcher in bioethics at the University of Copenhagen.

Kenneth Shields is a visiting assistant professor of philosophy in the Department of Philosophy and Religion at the University of Indianapolis.

Doris Leibetseder is a senior research fellow at the University of Vienna and a visiting scholar at the ReproSoc group at the University of Cambridge. Elisabeth A. Lloyd is Arnold and Maxine Tanis chair of history and philosophy of science at Indiana University. Anne Lykkeskov is an external lecturer at the University of Copenhagen. Divya Manoharan is a medical student at the Johns Hopkins University School of Medicine. Mayli Mertens is a postdoctoral fellow in bioethics at the University of Copenhagen.

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Adam Shriver is a philosopher and bioethicist, currently research fellow at Drake University, Iowa. Aaro Tupasela is a sociologist of science and technology working at the University of Helsinki. Pavel Vasilyev is senior lecturer at the Department of History, HSE University in St. Petersburg, Russia. Isaac A. Wagner is a teaching associate professor of bioethics at the University of Copenhagen. Mary Jean Walker is a lecturer in philosophy at La Trobe University, Victoria, Australia.