Incentives and Disincentives in Organ Donation: A Multicultural Study among Beijing, Chicago, Tehran and Hong Kong (Philosophy and Medicine, 133) 3031292383, 9783031292385

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Philosophy and Medicine

P&M133

Ruiping Fan   Editor

Incentives and Disincentives in Organ Donation A Multicultural Study among Beijing, Chicago, Tehran and Hong Kong

Philosophy and Medicine Founding Editors H. Tristram Engelhardt Jr. Stuart F. Spicker

Volume 133

Series Editors Søren Holm, The University of Manchester, Manchester, UK Lisa M. Rasmussen, UNC Charlotte, Charlotte, USA Editorial Board Members George Agich, Austin, TX, USA Bob Baker, Union College, Schenectady, NY, USA Jeffrey Bishop, Saint Louis University, St. Louis, USA Ana Borovecki, University of Zagreb, Zagreb, Croatia Ruiping Fan, City University of Hong Kong, Kowloon, Hong Kong Volnei Garrafa, International Center for Bioethics and Humanities, University of Brasília, Brasília, Brazil D. Micah Hester, University of Arkansas for Medical Sciences, Little Rock, AR, USA Bjørn Hofmann, Norwegian University of Science and Technology, Gjøvik, Norway Ana Iltis, Wake Forest University, Winston-Salem, NC, USA John Lantos, Childrens’ Mercy, Kansas City, MO, USA Chris Tollefsen, University of South Carolina, Columbia, USA Dr Teck Chuan Voo, Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore

The Philosophy and Medicine series is dedicated to publishing monographs and collections of essays that contribute importantly to scholarship in bioethics and the philosophy of medicine. The series addresses the full scope of issues in bioethics and philosophy of medicine, from euthanasia to justice and solidarity in health care, and from the concept of disease to the phenomenology of illness. The Philosophy and Medicine series places the scholarship of bioethics within studies of basic problems in the epistemology, ethics, and metaphysics of medicine. The series seeks to publish the best of philosophical work from around the world and from all philosophical traditions directed to health care and the biomedical sciences. Since its appearance in 1975, the series has created an intellectual and scholarly focal point that frames the field of the philosophy of medicine and bioethics. From its inception, the series has recognized the breadth of philosophical concerns made salient by the biomedical sciences and the health care professions. With over one hundred and twenty five volumes in print, no other series offers as substantial and significant a resource for philosophical scholarship regarding issues raised by medicine and the biomedical sciences.

Ruiping Fan Editor

Incentives and Disincentives in Organ Donation A Multicultural Study among Beijing, Chicago, Tehran and Hong Kong

Editor Ruiping Fan Department of Public and International Affairs City University of Hong Kong Kowloon, Hong Kong

ISSN 0376-7418     ISSN 2215-0080 (electronic) Philosophy and Medicine ISBN 978-3-031-29238-5    ISBN 978-3-031-29239-2 (eBook) https://doi.org/10.1007/978-3-031-29239-2 © The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 This work is subject to copyright. All rights are solely and exclusively licensed by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland

Acknowledgements

This book is an output of our research project “Proper Incentives for Organ Donation: A Multidisciplinary Local and International Study on the Divergent Models” (GRF Project No: 11607518, Sep 2018–Aug 2021) funded by Hong Kong Research Grants Council. I wish to thank each co-investigator and research assistants of the project, Ho Mun Chan, Chunyan Ding, Lawrence Yung, Xiaowei Zang, T-fai Yeung, Yang Zheng, and Wai Chun Yeung, for their invaluable contributions to the project and the book. I am grateful to our research collaborators, Yali Cong from Beijing, Michael Millis from Chicago, and Mitra Mahdavi-Mazdeh from Tehran, for accomplishing our research goals at each site. Their team members, Jian Tang and Guangkuan Xie (for the work in mainland China), Wan-Zi Lu (for the work in the US), Ellen Sepanian and Anna Justine Maliwat (for the work in Iran), made enormous efforts in conducting interviews and performing relevant research activities during the COVID-19 pandemic. I am indebted to Xiaowei Zang, the then Dean of the College of Liberal Arts and Social Sciences at City University of Hong Kong, for his remarkable support for this project as well as for my research aspirations. Finally, I am highly appreciative of the generous assistance I have received from Lisa Rasmussen, co-editor of the Philosophy and Medicine series via Springer, in suggesting the structure of the book, reviewing chapter drafts, joining online meetings with other authors, and encouraging me in all effective ways to bring the book to a successful completion.

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Contents

Part I Introduction 1

Introduction: Toward a New Model of Incentives for Organ Donation����������������������������������������������������������������������������������    3 Ruiping Fan

Part II Beijing Papers 2

 The Background to Organ Donation in Mainland China��������������������   25 Guangkuan Xie and Yali Cong

3

Mixed Incentives, Different Voices: A Qualitative Study of Organ Donation Incentive Policies in Two Big Chinese Cities ����������������������������������������   39 Jian Tang and Guangkuan Xie

4

Organ Donation Incentives in Mainland China: Ethical Commentaries and Reform Recommendations ����������������������   55 Jian Tang, Guangkuan Xie, and Yali Cong

Part III Chicago Papers 5

The Concepts and Development of Organ Donation Policy in the United States����������������������������������������������������������������������   71 Wan-Zi Lu and J. Michael Millis

6

Interviews in Chicago������������������������������������������������������������������������������   83 Wan-Zi Lu and J. Michael Millis

7

Ethical Considerations About Three Incentive Models Based on Research in Chicago��������������������������������������������������  103 Wan-Zi Lu and J. Michael Millis

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viii

Contents

Part IV Tehran Papers 8

 The Kidney Transplantation Program in Iran��������������������������������������  121 Mitra Mahdavi-Mazdeh, Ellen Sepanian, and Anna Maliwat

9

 Interview Findings in Relation to Organ Donation in Iran ����������������  133 Mitra Mahdavi-Mazdeh and Ellen Sepanian

10 A  Comment on the Barriers to and Incentives for Organ Donation in Iran��������������������������������������������������������������������  153 Mitra Mahdavi-Mazdeh and Anna Maliwat Part V Hong Kong Papers 11 Organ  Donation: The Hong Kong Context��������������������������������������������  173 Ho Mun Chan and T-Fai Yeung 12 Incentives  for Organ Donation in Hong Kong: In-Depth Interviews ��������������������������������������������������������������������������������  195 T-Fai Yeung 13 Incentives  for Organ Donation in Hong Kong: A Survey��������������������  215 Lawrence Yeuk-yu Yung and Yang Zheng 14 Organ  Donation, Comprehensively Good Incentives, and the Family: A Comment on Hong Kong’s Interview Findings and Survey Results ������������������������������������������������  237 Ruiping Fan Part VI Implications for Hong Kong and Other Societies: Toward a New Model 15 Organ  Donation Incentives: A Multicultural Comparison������������������  263 Lisa M. Rasmussen 16 Organ  Donation Incentives: Implications for Hong Kong and Beyond ����������������������������������������������������������������������������������������������  275 Chunyan Ding and Ho Mun Chan Index������������������������������������������������������������������������������������������������������������������  293

Contributors

Ho Mun Chan  Department of Public and International Affairs, City University of Hong Kong, Kowloon, Hong Kong Yali Cong  School of Health Humanities, Peking University, Beijing, China Chunyan  Ding  School of Law, City University of Hong Kong, Kowloon, Hong Kong Ruiping Fan  Department of Public and International Affairs, City University of Hong Kong, Kowloon, Hong Kong Wan-Zi Lu  Polonsky Academy for Advanced Study in the Humanities and Social Sciences, Van Leer Jerusalem Institute, Jerusalem, Israel Mitra Mahdavi-Mazdeh  Tehran University of Medical Sciences, Tehran, Iran Anna Maliwat  University of Toronto, Toronto, Canada J. Michael Millis  University of Chicago, Chicago, IL, USA Lisa M. Rasmussen  Department of Philosophy, and Faculty Fellow, the Graduate School, University of North Carolina, Charlotte, NC, USA Ellen Sepanian  Carl von Ossietzky Universität Oldenburg, Oldenburg, Germany Helmholtz-Zentrum für Infektionsforschung (HZI), Braunschweig, Germany Jian  Tang  School of Medical Humanities, Tianjin Medical University, Tianjin, China Guangkuan Xie  School of Health Humanities, Peking University, Beijing, China T-Fai Yeung  Global Studies Institute in Hong Kong, Hong Kong, China Lawrence  Yeuk-yu  Yung  Department of Public and International Affairs, City University of Hong Kong, Kowloon, Hong Kong Yang Zheng  School of Public Administration, Central China Normal University, Wuhan, China ix

Part I

Introduction

Chapter 1

Introduction: Toward a New Model of Incentives for Organ Donation Ruiping Fan

1.1 Introduction This book includes essays that have been developed from our project’s findings regarding three types of incentive for organ donation, namely honorary, compensationalist, and familist incentives. We conducted research in four culturally different societies—Hong Kong, mainland China, Iran, and the United States—to study the function of such incentives. The aim of the research is to find a series of particular incentive measures for contemporary societies to adopt that will be practically effective, politically legitimate, and ethically justifiable in order to increase rates of organ donations. This book is a direct output from our research as carried out through interviews and literature studies in each of the four societies as well as through our conceptual and ethical deliberations on the research findings. In the following sections of this introduction, I will first lay out the background of our project, especially the organ shortage situation in each society, to highlight some of the main issues confronted by each society that this project addresses. Then I will explain the research project’s design, especially the meanings of the three types of incentive for organ donation and the theoretical logic of “practical effectiveness,” “ethical justifiability,” and “political legitimacy” that, as mentioned earlier, underly our approach to incentives for organ donation, as well as the methods, expectations, and limitations of the research. Key findings regarding how each incentive works in each society are then summarized, followed by additional discussion on these findings and on how a new model of incentives that can be adopted by today’s societies to optimize organ donations can be constructed. This introductory chapter concludes with an outline of the content of each chapter included in this volume. R. Fan (*) Department of Public and International Affairs, City University of Hong Kong, Kowloon, Hong Kong e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 R. Fan (ed.), Incentives and Disincentives in Organ Donation, Philosophy and Medicine 133, https://doi.org/10.1007/978-3-031-29239-2_1

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1.2 Confronting the Organ Shortage Problem Organ transplantation is immensely beneficial. For many people with end-stage organ failure, organ transplantation is a matter of life and death. Indeed, it saves lives. And it also improves lives. The importance of transplantation covers a wide range of situations of varying medical urgency. For numerous kidney-failure patients, for example, organ transplantation can lead to better quality of life, longer life expectancy, and less healthcare resource spending by avoiding medical procedures such as dialysis, while even for more minor vision problems, a cornea transplant can restore sight and light perception. The clinical importance of organ transplantation for health care in contemporary society cannot be denied. However, to date no society has had a sufficient supply of organs to provide transplants for all who could benefit from one. This shortage of transplant organs is a common situation faced by all societies, including each of the four selected for our research, and the need to improve and increase legitimate organ donations is clear. Table 1.1 below, which also appears in Chap. 11, shows that the four societies in our research have fared quite differently regarding deceased donations per million population (PMP). Of course, in addition to deceased-donor donations, there are also living-donor donations. Although some research shows that living-donor transplants may overall have better medical outcomes than deceased-donor transplants (see, e.g., Health, 2020), living donors face definite risks, such as short- and long-term health risks arising from the surgical procedures, problems with remaining organ function, and psychological problems following donation. Thus, it is understandable that in most societies living donations are usually made only for loved ones. Iran may be the only exception to this common practice, because it implemented a unique compensationalist policy for living kidney donations and immensely increased so-called “unrelated living donations” (see Part IV of this book). Even in Iran, however, deceased donations have been on the rise while living donations have declined since a brain death donation policy was launched in recent years. Figure 1.1 (below), also shown in Chap. 8, shows this situation clearly. Clearly, living and posthumous organ donations are ethically different. However, this book does not attempt to compare the empirical findings of these two forms in a systematic way. This is because, first, in certain countries one form is much more prevalent than the other, as chapters in this book indicate. Consequently, it would not help to compare living and posthumous donation, for every organ, within or Table 1.1  Deceased donations in our four research sites (PMP) Hong Kong Mainland China Iran The US

2014 5.4 1.2 8.4 27

2015 N/A N/A N/A N/A

Data source: IRODaT, 2022a, b

2016 6.3 3 10.9 30.98

2017 6 3.67 16.7 31.96

2018 6.7 4.6 11.26 33.32

2019 3.86 4.16 14.34 36.88

2020 5.59 3.6 7.8 38.03

2021 N/A N/A 11.72 41.88

1  Introduction: Toward a New Model of Incentives for Organ Donation

5

30 25

PMP

20

23 23.1 18

20.1

21.5

23

24.7

23.2 22.9 22.2 24 22.4

20.3 20.1 20 15.8 14.6

15 10 5 0

2.9 2.9 4.1 1.6 1.7 1.8 2.3 0.1 0.2 0.6 0.7 1.2

Deceased donor

5.6

6.9

8.7 8.4

14.34 13.9 12 13 10.3 10.911.4311.2610.93

11.07 9.36 7.8 5.97

Living donor

Fig. 1.1  Living and cadaveric organ Donations in Iran (PMP), 1999–2021. (Data source: Database of Iran, IRODaT, 2022a, b) Table 1.2  Numbers of waiting patients and patient-to-donation ratio in HK and US

Kidney Liver Heart Lung

No. of patients on waiting list 2015 2019 HK US HK US 1941 97,680 2268 146,574 89 14,046 60 27,081 36 2904 54 8649 16 3978 24 4809

Patient-to-donation ratio 2015 2019 HK US HK 24.0: 1 8.06: 1 39.8: 1 1.50: 1 1.97:1 1.40: 1 2.60: 1 1.03:1 6.80: 1 1.20: 1 1.92:1 3.40: 1

US 5.96:1 2.80:1 2.38:1 1.74:1

Data sources: Research Office, Legislative Council Secretariat, 2021; Israni et  al., 2021; Israni et  al., 2017; OPTN/SRTR 2019 Annual Data Report: Introduction, 2021; OPTN/SRTR 2015 Annual Data Report: Introduction, 2017

between every country. Given the varying contexts and laws, it would be like comparing apples and oranges. Second, it may sometimes be useful to compare them between some societies regarding some organs, which has been addressed in some chapters (e.g., see the comparison between Hong Kong and the US regarding liver and kidney donations in the final part of this section). Finally, individual chapters are fairly clear about separating living vs. deceased donation in their particular treatment. We have generally left it to each chapter to handle this issue as they see necessary. In short, organs for transplants are needed in every society but comparisons show that some societies, such as Hong Kong, have a more urgent need to improve deceased donation rates than do other societies, such as the US. Table 1.2 shows the differences between Hong Kong and the United States regarding the numbers of patients on the waiting lists for various organs and patient-to-donation ratios for the years 2015 and 2019. Table 1.2 shows that, overall, the US is doing much better than Hong Kong in terms of kidney, heart, and lung donations for transplants. Hong Kong is only outperforming the US in liver donations: for example, Hong Kong’s patient-to-­donation ratio was 1.40: 1 in 2019, while the US’s ratio was 2.80: 1 in that year.

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Table 1.3 shows the numbers of both deceased and living donations in these two societies for various organs in 2015 and 2019. This shows that more than 40% of liver donations in Hong Kong were from living donations, while this percentage was only about 5% in the US. Hong Kong has a much higher living liver donation rate than the US (and this also indirectly explains why Hong Kong’s patient-to-donation ratio for liver transplants was better than that of the US). In contrast, if we calculate the proportion of living kidney donations in Hong Kong, it was only about 20% of total kidney donations. My tentative explanation for this difference between living kidney and living liver donations in Hong Kong is that it is generally believed in Hong Kong that kidney-failure patients can still survive on dialysis while waiting for a cadaveric kidney, whereas liver-failure patients have no way to survive except for transplantation. Therefore, relatives do not actively give living kidney donations at the rate they give living liver donations. Why is it that in the US living liver donations are much lower than living kidney donations as a proportion of the total donations for each organ? The explanation of our collaborator, Dr. Michael Millis, is as follows. In the US, living kidney donation is much less risky (lower morbidity and mortality) than living liver donation, and the outcomes for the living kidney donation are significantly better than for cadaveric kidney donation, so programs push living kidney donation much more than living liver donation since the graft survival probability of a living liver donation is generally less than that in cadaveric liver transplantation once adjusted for risk. Such situations highlight the fact that organ donation is a highly complicated issue in every society and that there are multiple causal factors associated with low donation rates. It has long been recognized that cultural elements and social ethos play significant roles in impacting people’s intentions to become donors. In this regard, the following factors have often been highlighted: religious beliefs, Table 1.3  Numbers of organ donors and waiting patients in HK and US HK 2015 No. of donors Kidney 81 Deceased 66 Living 15 Liver 59 Deceased 36 Living 23 Heart 14 Lung 13

US 2015

2019 No. of waiting patients 1941

89

36 16

No. of donors 57 42 15 43 23 20 8 7

No. of waiting patients 2268

60

54 24

No. of donors 12,115 6489 5626 7127 6768 359 2819 2072

2019 No. of waiting patients 97,680

14,046

2904 3978

No. of donors 24,613 17,746 6867 9675 9151 524 3635 2755

No. of waiting patients 146,574

27,081

8649 4809

Data sources: OPTN/SRTR 2015 Annual Data Report: Introduction, 2017; OPTN/SRTR 2019 Annual Data Report: Introduction, 2021; OPTN/SRTR 2019 Annual Data Report: Deceased Organ Donors; OPTN/SRTR 2019 Annual Data Report: Liver; OPTN/SRTR 2019 Annual Data Report: Kidney; Israni, et al., 2017; Research Office, Legislative Council Secretariat, 2021

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relational ties, family influences, ideas of body integrity, trust or distrust of a health care system, an individual’s knowledge about the organ donation process, and the death criterion adopted in a society. It has also been discovered that these factors are intertwined with more complex and nuanced issues, such as misunderstandings of canonical religious stances and ignorance about the donation process in a society, including fears of early retrieval (e.g., Irving et al., 2012). Research has also revealed that various features of healthcare systems, relevant organizations, and structures constitute significant barriers to or facilitators of increasing donations. These include accessible or inaccessible medical and technological systems, infrastructural and financial accommodators of or hindrances to transplantation (especially sufficient or insufficient reimbursement, and increasing or shortening length-of-stay for hospital care), convenient or inconvenient donation registration systems, and sufficient or insufficient numbers and/or training of donation coordinators (e.g., Vanholder et al., 2021). It is accordingly clear, at least at a theoretical level, that a variety of strategies for dealing with these factors or features can be attempted to enhance a society’s donation rates. However, due to the immense complexities of those factors and features, it would not be feasible in a practical sense for any single research project to attempt to touch on every relevant issue associated with organ transplantation and determine a flawless solution to the organ shortage problem for every society once and for all; such an approach would not lead to the desired outcomes.

1.3 Investigating the Three Types of Incentive Our research project has been designed to focus on issues regarding adequate incentives for organ donation in every society. We assume that offering adequate incentives will be substantially helpful in improving donations. Of course, we do not fantasize that once adequate incentives are offered, all relevant problems will be solved and organ donation will immediately become optimal in every society. However, we do think that a research approach focused on comprehensively good incentives for organ donation has several merits that other approaches may not. First, looking for comprehensively good incentives can readily draw on a society’s cultural resources to consider properly effective incentives for promoting donation in that society. Second, studying incentives and disincentives in organ donation can help disclose the organizational and structural problems or defects regarding organ donation existing in a society and thereby suggest relevant institutional reforms of that society. Indeed, as Lisa Rasmussen remarks in Chap. 15, one of the most interesting aspects of this study of organ donation incentives is what it reveals about organ transplant systems and structures in relation to increased organ donation rates. Finally, exploring comprehensively good incentives can deepen our appreciation of the ethical aspects of human organ donation and enrich our understanding of the interplay among ethics, politics, and practice regarding organ donation in contemporary society.

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We started our project in 2019 with a grant funded by Hong Kong’s Research Council, with the aim of developing a set of incentive measures to enhance organ donation rates, for Hong Kong to employ (and for other societies to learn from), that are not only politically legitimate and ethically justifiable but also practically effective. Indeed, Hong Kong’s demand for organs (especially kidneys) far outstrips the supply, but few useful incentive measures have been implemented to promote organ donation and no specific model of incentives for organ donation exists. We decided to study three prominent international models to investigate what Hong Kong could learn from them, as well as whether a new model could be proposed for Hong Kong. We termed these three models liberal, compensationalist, and familist models, practiced respectively in the United States, Iran, and mainland China, the three target societies selected for our research. Our project did not attempt to affirm which one of these models, as a whole, would best suit Hong Kong. Rather, we attempted to integrate the merits of particular incentive measures from each model to create a set of measures suitable for adoption in Hong Kong. These would not be viable unless our research could confirm that each measure was practically effective, ethically justifiable, and politically legitimate. The liberal model only affirms honorary incentives, such as a medal of honor, a thank-you letter, a memorial park, and similar measures, and these are adopted and espoused in the United States and many other Western countries. This model emphasizes an unselfish, altruistic, and egalitarian concern for the lives and welfare of others and encourages individuals to become donors, both living and deceased, to help others. Under this model, if someone decides to donate an organ, the intent is not to gain any material or monetary benefit for oneself because that would entail the commercialization of the human body. Neither should the motivation be to benefit family members by donating an organ, because that would demonstrate that the action is not essentially unselfish, or at least not as altruistic as an organ donation should be. Accordingly, the liberal model is vigilant in opposing any idea of organ commercialization or marketing, and rejects the libertarian idea that the state has no authority to prohibit individuals from controlling the use of their own body as they see fit, including selling their organs (Cherry, 2005). The liberal model also runs counter to familist values whereby it is naturally appropriate to give preferential treatment to one’s family members. In contrast, the Islamic Republic of Iran launched a compensationalist model of incentives in 1988 (Ghods & Mahdavi, 2007) and from 1997 began offering financial support to unrelated living kidney donors (who must not be related to the recipients) (Bagheri, 2006). According to Professor Mitra Mahdavi-Mazdeh, our Iranian collaborator for this project, we understand that the official Iranian term used for such financial support is “Hadieh Isar” in Farsi, which is usually translated as “gift of altruism” in English. However, while the “gift” in the English translation of “gift of altruism” normally refers to the organ donated by the donor for transplanting into another person, in the original Farsi “gift” refers to the financial compensation that is given to the donor to reward their “altruistic” donation. Indeed, under this compensationalist model, a living kidney donor would receive a specific amount of financial compensation from the government, a year of free health insurance, and a

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negotiated amount of additional monetary compensation from the recipient or their family. It is important to note that in the Iranian model, the compensation was only to be offered to living donors, not deceased donors. The model has been quite motivational: Iran completely eliminated its wailing list for kidney transplantations by adopting these compensational incentives (Chap. 8). Finally, Israel was the first country to formally devise a familist model to promote donation. Israel’s Organ Transplantation Law was passed by its parliament in 2008, publicized toward the end of 2010, and fully implemented in 2012 (Stoler et al., 2016). Under this law, when it comes to priority for receiving an organ donation, three levels of priority for living organ donors and deceased donors’ families are defined: (1) the highest priority level is given to patients who have a first-degree family member who was a cadaveric donor, or who have themselves previously been live donors; (2) the next priority level is given to those who have been registered donors for at least three years; and (3) the final priority level is given to patients with first-degree relatives who are registered organ donors (Ashkenazi et al., 2015). In mainland China in the early twenty-first century, some provinces had issued new principles or regulations proposing giving priority to the family members of deceased donors, but without clearly defining the scope of family beneficiaries. In 2010, the then Chinese Ministry of Health issued an official document titled “China’s Basic Principles for the Distributing and Sharing of Human Organs and the Core Policy for Liver and Kidney Transplantations” (Ministry of Health, 2010). These basic principles and core policy state that a living donor or the immediate family members of a cadaveric donor have a reasonable priority right in the allocation of donated livers or kidneys when they are needed. Subsequently, many Chinese provinces followed the spirit of the document and promulgated organ donation regulations containing such a priority right. For our project, we decided to take mainland China, rather than Israel, as our target country to conduct our research on the familist model because there is shared operating Chinese culture between mainland China and Hong Kong. Indeed, both Hong Kong and mainland China have inherited vital Confucian cultural characteristics associated with prominent familist ethics, familial structures, and relational dynamics. Hong Kong can learn from mainland China’s experiences in this regard. In addition, in our proposal for a type of familist incentive in conducting our interviews and surveys in Hong Kong, we recommended giving a priority right only to those patients with a first-degree family member who was a cadaveric donor, or who have themselves previously been live donors. In other words, to use Israel’s terms, we only recommended that the highest priority level be adopted in Hong Kong. Table 1.4 shows our initial classification of each of our four research areas in terms of their adoption of different types of organ donation incentive. In short, our project is the first attempt to systematically study the various types of incentive for organ donation, namely honorary, compensationalist, and familist. By investigating particular incentive measures under each of these three types in the four target societies, the US, Iran, mainland China, and Hong Kong, we attempt to propose a set of comprehensively good incentive measures for Hong Kong to employ as well as for other societies to consider. As mentioned earlier, in order for

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Table 1.4  Overview of the three types of incentive adopted in the four research sites Hong Kong Mainland China Iran The United States

Honorary √ √ √ √

Compensationalist X X √ X

Familist X √ X X

Note: “√” = adopted; “X”: not adopted. Data source: summarized by the author

such incentive measures to be comprehensively good for a society to implement, they must be practically effective, politically legitimate, and ethically justifiable, and all three conditions are necessary. A practically effective incentive measure must be a strong motivator for many individuals to be willing to donate. A politically legitimate measure must gain the majority support of a society. Finally, an ethically justifiable measure must be able to withstand moral and ethical scrutiny. However, a practically effective incentive measure (such as a monetary reward) may not be morally defensible or political legitimate. On the other hand, a morally defensible or politically legitimate measure (such as some honorary measure) may not be practically effective. Finally, a measure both practically effective and morally defensible (such as some familist measure) may not be politically legitimate. Accordingly, all these requirements—practical effectiveness, ethical justifiability, and political legitimacy—need to be satisfied in order for an incentive measure to be comprehensively good and therefore suitable for adoption by a society. We conducted a small number of in-depth interviews with donors, recipients, family members, physicians, administrators, policy makers, ethicists and others in each of the four research sites to secure useful data regarding the particular incentive measures being adopted in each of the four societies. We also conducted a quantitative survey in Hong Kong to find out which particular incentive measures might gain the support of the majority of people so as to confirm their political legitimacy. These data have been analyzed to explore the practical (in)effectiveness and ethical (un)justifiability of the particular incentive measures adopted in each society. Relevant legal studies have also been conducted to consider if legal amendments and/or legislation are needed in order to implement such incentive measures in Hong Kong (Chap. 16). In short, the chapters included in this volume cover the reports, analyses, and deliberations of the investigators from the four sites regarding the relevant findings of their research on the three types of incentive.

1.4 Rethinking the Three Types of Incentive Through the in-depth interviews and literature studies carried out in Hong Kong, Beijing, Chicago, and Tehran, rich data has been gathered about each of the three types of incentive. First, as expected, there is widespread support for honorary incentives in each society, so we can generally conclude that honorary incentives are

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comprehensively good for any society to adopt. Indeed, nobody has challenged the ethical justifiability of any honorary incentive for organ donation. Although we have carried out a quantitative survey (and received absolute majority approval of honorary incentives) only in Hong Kong, it would be reasonable to assume that most people in the other societies would also approve the adoption of such incentives. That is, we have no reason to doubt the political legitimacy of honorary incentives in these societies. However, some interviewees, especially those in mainland China, lacked confidence in the practical effectiveness of such incentives. Moreover, some honorary incentives may not be purely honorary but also contain some compensationalist elements, whose ethical justifiability might be debatable (see below). Nevertheless, I think we can still generally conclude that at least purely honorary incentives are comprehensively good incentives, with each society deciding which specific honorary measures are to be adopted as the most effective honorary motivators to enhance donation rates. For example, as our Chinese colleagues argue, mainland China should offer more than only an official donation certificate to a deceased donor’s family to serve as an effective honorary incentive, and should build its donor memorial parks not only in remote suburban areas, but also near urban areas where many people live, in order to demonstrate an appropriate level of honor and appreciation for donors (Chap. 4). Compensationalist incentives have turned out to be much more complicated than we originally thought. As mentioned above, Iran’s model compensates living kidney donors with direct monetary rewards paid by both government and the recipients, and the model has achieved enormous successes, eliminating the country’s kidney transplant waiting list. Although it has generated huge ethical controversies internationally, the model has gained broad support in Iran. The Iranian interviewees’ suggestion is not to abandon such monetary compensation once and for all, but rather to implement a continuum of long-term care and support for living donors in the country (Chap. 9). Meanwhile, it should be noted that it is by no means the case that other societies have never offered any kind of compensation for living donors. For example, many states in the US offer funding to support living donors. This is similar to the funding that can be accessed from NGOs that provide funds for living donors for travel and accommodation expenses and to compensate for lost earnings. A living donor can either deduct the actual costs (usually up to US$10,000) from their taxes or apply for funding from the NGO (Chap. 6). One may contend that the US case differs from the Iranian model in that a living donor in the US is only reimbursed for the costs actually incurred from the donation, while in the Iranian model the individual gains financially by donating. This is true, but it still cannot be denied that such funds in the US offer living donors a kind of monetary compensation, which may not necessarily be offered in other societies. For example, in Hong Kong and mainland China no funds are available for covering the expenses of living donors (for their travel, lodging, or lost income for donations), who are usually the relatives of the recipients in these societies. On the case of Iran, it is honestly held that unrelated living donors deserve financial support similar to that received by related living donors from their families. In their view,

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the claim that related living donations (as take place in many countries) are a symbol of love while unrelated donations (as take place in Iran under the Iranian model) are a commercial transaction does not make sense. This is because, as they see it, although no official transaction seems to be involved in a related living donation case since all expenses come from the same family budget, financial support is actually offered to a related donor by the family in the normal case (Chap. 10). Mainland China has offered financial compensation to cover deceased donors’ medical expenses and funeral expenses. In addition, deceased donors’ families can apply for humanitarian aid (usually called “Hardship Allowance for a Donor’s Family” 捐献者困难家庭救助金) if they are in financial difficulty, and there are multiples sources for such aid: local government, hospitals, social fundraising, and the recipients. The total amount of such different kinds of compensation varies from province to province in mainland China. As shown in Chap. 3, most interviewees in mainland China think that paying funeral and medical expenses for the deceased donors and helping their families is reasonable and appropriate and should not be taken as running the risk of engaging in organ sales (Chap. 3). However, their views regarding humanitarian aid to a deceased donor’s family in financial difficulty are ambivalent. On the one hand, they worry that such financial compensation may induce low-income individuals to become donors and lead to their exploitation while unfairly benefiting the affluent. On the other hand, they admire the Confucian cultural tradition of showing gratitude by reciprocating benefit: given that deceased donors and their families (which should not be absolutely distinguished from each other under Confucian familist culture) contribute to others enormously by donating organs, those others should in turn express their gratitude to the family of a deceased donor. If that family is in financial difficulty, offering them financial compensation is the best way to reciprocate benefit. In short, they tend to support offering such humanitarian aid to these families to relieve their hardship as long as it does not induce a donation against a deceased’s family member’s wishes (Chap. 4). Only in Chicago did most interviewees oppose any kind of compensationalist incentives for deceased donors or their families; all other research sites espoused some sort of compensation. For example, mainland Chinese people strongly supported the paying of funeral and medical expenses for deceased donors and their families (Chap. 3). In the case of Iran, providing funeral expenses was the only compensationalist option on which all interviewees agreed. In their view, Iranian tradition recognizes formal funeral ceremonies as a symbol of respect and love for the deceased persons, meaning that grieving families need to spend much of their resources on funeral services. Accordingly, covering funeral expenses for deceased donors would admirably show community appreciation of the donors and their families, without causing any negative impact on public respect for the grieving families. Indeed, they see this compensationalist incentive as killing two birds with one stone: it will not only manifest a significant level of honorary and compensational gratitude to deceased donors and their families, but will also serve as an effective educational tool for the public regarding deceased donations (Chap. 9).

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This view of compensation suggests that an incentive measure may not necessarily be exclusively honorary or exclusively compensationalist, but can be both. The discussion regarding the proposal to provide a public niche for placing a deceased donor’s cinerary casket in Hong Kong illustrates this point (Chaps. 12 and 13). Since Hong Kong lacks sufficient land to provide cemeteries, most families have to wait for a few years to get a free public niche (especially for one in their favorite place) in which to place their deceased relative’s cinerary casket, so they may have to rent or purchase a private niche to use for a few years. Accordingly, if a favorite public niche were offered to a deceased donor right away so that the family would not need to wait and spend extra money, it would constitute a reasonable incentive measure for deceased donation that is not only honorary but also compensationalist. If the arguments offered in Chap. 14 for this incentive measure are sound (namely, that the motivating force of this measure is primarily the sense of honor it carries rather than its monetary value, offering this measure to deceased donors is not unfair to any other person who has not become an actual donor, and adopting this measure will not lead to any unjust exploitation of individuals from low-income families), it would be ethically justified (as well as practically effective and politically legitimate) for Hong Kong to adopt this mixed (honorary and compensationalist) incentive measure to promote deceased donation (Chap. 14). Finally, regarding the familist incentive (primarily prioritizing the right of a deceased donor’s immediate family members for transplant organs if needed), it is interesting to note that, in addition to Israel and mainland China (as discussed earlier), our research has found that this familist incentive has also been practiced in Iran. In the case of Iran, this incentive has been offered to brain-dead donors’ first-­ degree family members ever since the launching of the Brain-Dead Donation Program by Iran’s Ministry of Health (Chap. 9). In the case of mainland China, some interviewees are not confident that this incentive has been very motivating, because everyone knows there is relatively little likelihood that a family member of a deceased donor will need an organ transplant (Chap. 3), but both mainland China and Iran seem to show general support for this incentive. In the case of Hong Kong, some interviewees have raised concerns about the appropriateness of this incentive, such as whether donation under this incentive is still altruistic, whether it improperly favors large families, and whether it generates a danger of compelling a donation against the wishes of the deceased (Chap. 12); Chap. 14 has attempted to rebut each of these charges in defense of adopting the incentive in Hong Kong. Finally, in the case of Chicago, many interviewees think that the familist incentives raise questions about individual autonomy: under this incentive, how could consent to donation remain an individual choice, and would this incentive carry a possible implication of organ donation as a transactional exchange (Chap. 6)? Generally, they do not think it “wrong” to offer familist incentives, but they find it hard to evaluate their overall impact on the transplant field if applied right across the board (Chap. 7).

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1.5 Toward a New Model of Incentives Based on the findings and reflections above, we can tentatively summarize comprehensively good incentive measures for each of the four societies in the following table (Table 1.5). This summary indicates that we should construct a new, comprehensive model of incentives for organ donation, differing from the liberal, compensationalist, or familist models with which we started in designing our research. Each of the three original models has primarily focused on one type of incentive, tending to overlook or reject the legitimacy and usefulness of other types. The liberal model (for honorary incentives only) is especially prominent in this regard. For the liberal model, only honorary incentives do not damage the altruistic nature of organ donation, and they are therefore the sole ethically acceptable form of incentive. Any other type of incentive, whether compensational or familist, would squarely contradict altruism and even run the risk of commercializing organ transplantation. Following this model, honorary incentives should not be supplemented with any other compensationalist or familist incentive measure for promoting organ donation, because such supplementation, according to the liberal model, would destroy the pure definition of “donation” as it should ethically be. However, such a single-layered model does not correspond with reality, nor is it ethically tenable. As mentioned, many states in the US offer funding to support living donors, which is undeniably a type of financial compensation not offered in other societies. In addition, another form of familist incentive has been adopted in the US, as an interviewee (the nephrologist) in Chicago told us: living donors in the National Kidney Registry get priority if they are in need of organs, and the same priority applies to their family members (Chap. 6). In other words, some specific compensationalist and familist incentive measures already exist in the US. Ethically, as argued in Chap. 14, we should not simply admire the function of pure altruism but ignore the rationale of mixed altruism: donations under familist incentives are not cases of pure altruism, but they are cases of mixed altruism which are still as ethically defensible as they are consequentially beneficial. Moreover, as Table 1.4 shows, various forms of compensational incentives have been accepted and

Table 1.5  Comprehensively good incentive measures for the four societies

HK MC Iran US

Honorary Compensationalist Living Living donor cash donor reward funding √ X X √ X X √ √ √ √ X √

Familist Humani-­ tarian aid X √ ? X

Mixed incentive (honorary and compensationalist) √ √ √ ?

Note: “√”: yes; “X”: no; “?”: uncertain. Data source: summarized by the author

√ √ √ ?

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supported in different societies. It is not ethically convincing to contend that no form of such incentives can be defended in any cultural and social context. Instead, it is much more appropriate to suggest that some forms of compensation may constitute a comprehensively good incentive for a particular society to employ, because it is not only practically effective and politically legitimate in that society, but is also ethically justifiable on the ground of ethical values such as reciprocity, equality, and fairness. For example, living donor rewards in Iran, living donor funding in the US, humanitarian aid in mainland China, and an immediate public niche offer (as a mixed honorary and compensationalist incentive) in Hong Kong may all turn out to be comprehensively good incentives, at least for each respective society. To restate the point, a new model of incentives should be one of comprehensive incentives for organ donation. First, the model should not include only one type of incentive—honorary, compensationalist, or familist—but should include at least two types, or even all three. Second, the specific incentive measures may vary from society to society, depending on a particular society’s cultural and social context. Finally, each incentive measure contained in the model for a society to employ must be practically effective, political legitimate, and ethically justifiable in that society. Let me take Hong Kong as an example. A new model of incentives for Hong Kong’s organ donation should include all three types of incentive. Specifically, for honorary measures, some culturally sensitive and effective ones should be selected, such as a memorial park of attractive stones engraved with the donors’ names. For compensationalist incentives, providing a public niche for a deceased donor may be the best option for Hong Kong to adopt. Finally, for the familist incentives, priority for organ transplants might be better restricted to first-degree relatives and last no more than 25 years. In short, following this model, every society should pursue those incentive measures that are comprehensive good (namely that are practically effective, politically legitimate, and ethically justifiable) to promote organ donation. Such measures may reasonably be different from society to society. This is by no means intended as a support of ethical relativism in the sense that ethical truth is relative to particular national or racial beliefs (in fact, no view conveyed in this book agrees with this kind of ethical relativism). However, it must be conceded that proper ethical deliberations in general, and deliberations regarding proper ethical donation in particular, cannot be made in isolation from the real features of the particular cultural and social contexts in which those organ donations take place. As a result, we may have strong ethical reasons to recommend different incentive measures for different societies to adopt. For instance, we can offer good ethical arguments to support Hong Kong offering public niches for deceased donors (Chap. 14), but to recommend such an incentive measure for the US would be a non-starter. At the same time, we should not exaggerate cultural or social differences in applying the new model, given that it may be necessary for each society to adopt all three types of incentive, honorary, compensationalist, and familist, in order to promote organ donation.

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1.6 Chapters in This Book This book consists of six parts, sixteen chapters in total. In addition to this Introduction, the main content of each part and each chapter is summarized as follows. Part II of the book covers three chapters contributed by Chinese bioethical scholars on organ donation issues in mainland China. Chapter 2 introduces the background to organ donation and transplantation in mainland China. First, it briefly describes China’s current healthcare system and the development of organ transplantation. It should be noted that although China’s basic health insurance schemes have increasingly covered more medical expenses for 95% of the Chinese population since 2020, organ transplant recipients and their families in most Chinese regions still have to pay for the bulk of the total transplant costs out of their own pockets, including the costs of organ procurement and maintenance, the transplant operation, hospital fees, and post-operative anti-rejection drugs. The chapter then outlines important legislation and landmark policies regarding organ donation in recent years and, finally, describes the organ donation operating system and its relevant features in mainland China, including the numbers of patients awaiting organ transplants. Chapter 3 reports the findings of the qualitative interviews and literature studies carried out in two big Chinese cities. Their research objectives were threefold: (1) to review the institutional progress of policy reform for organ donation in mainland China; (2) to understand how China’s current three prevailing organ donation incentive types (honorary, compensationalist, and familist) have operated in practice; and (3) to clarify what particular incentive measures should be adopted in mainland China. They have found that all three types of incentive (honorary, compensationalist, and familist) coexist in current Chinese organ donation practices and some particular incentive measures under each type have gained general support in society, but no one type of incentive has shown significant advantages over others. The chapter concludes that the ultimate effectiveness and suitability of each of these three types of incentive for organ donation should be subject to long-term observation and ethical evaluation. Chapter 4 provides further ethical commentaries in response to the research findings described in Chaps. 2 and 3. The authors contend that it is not the case that only one type of incentive can be justified for motivating organ donation in mainland China. In particular, they argue that while each of the three types of incentive can work to some degree to motivate donation, certain particular incentive measures, such as humanitarian aid to deceased donors’ families in economic hardship situations, could be the most motivating in mainland China if they can be ethically justified. Finally, the authors revisit the orientation of China’s organ donation reform and recommend a few general principles on promoting public education, improving legislation and institutional design, and promoting scientific and technological innovation for guiding Chinese organ donations.

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Part III looks at three Chicago papers. Chapter 5 delineates a contextual investigation of organ donation in the United States. It first presents empirical data related to the growth of donation rates to contextualize relevant developments before introducing the key legal apparatus, the National Organ Transplant Act (NOTA). Section Two details the policy and legislation regarding transplantation in the US, covering the justification for and goals of organ donation, the history of relevant regulations, and the passage of NOTA. Section Three focuses on the organ transplantation systems and structures, illustrating the function of the Organ Procurement and Transplantation Network (OPTN), the payors’ role in the regulation of transplantation, and the OPTN’s Final Rule guiding principles in organ donation. The last section situates developments in Chicago in this context and outlines the role of the regional organ procurement organization, the Gift of Hope Organ & Tissue Donor Network. Chapter 6 reports findings from the interviews conducted in Chicago about honorary, compensationalist, and familist incentives for deceased organ donation. Informants overall supported the current honorary incentives and ranked this kind of incentive as their first choice, although they also pointed out the incentives could be improved if the corresponding systems addressed issues that may hinder eligible donors from signing up or consenting to donation. Even though many interviewees saw a risk that compensationalist incentives could lead to exploitation of the underprivileged in society, some respondents pointed out that closely monitored compensation in the form of tax deductions or funeral support might enlarge the willing donor pool. On familist incentives, many interviewees recognized that those incentives might work especially well in contexts where familial ties are the most important social relationships for people, but the model is not the most suitable one for contemporary American society because social networks are not necessarily family based. Chapter 7 draws upon existing literature as well as the analyses carried out in the two previous chapters to further address issues around adopting different incentives in the United States. The authors hold that suitable incentives not only motivate the act of donation but also generate a positive influence on donors and their families, as well as enhancing the image of organ donation. The positive influence arises from the ethical practices and the practicalities of implementing the incentives. In the authors’ view, the honorary incentives that operate in Chicago illustrate that the public perceives donation as an act to foster the common good. In addition, the decision to donate without receiving any compensation or priorities in return brings long-term peace to donor families as well as strengthening the culture of altruistic organ donation. The chapter illustrates why and how compensationalist and familist incentives run the risk of undermining the honorary positive influence in the long run while highlighting the importance of designing contextualized incentives in American society. Part IV comprises three chapters on the research conducted in Iran. Chapter 8 describes the Iran model of kidney donation. The authors attempt to provide a holistic understanding of this model, introducing Iran’s health care system, the development process of its kidney transplantation program, and the financial issues related to Iran’s organ donation system. Specifically, kidney transplantation started in Iran

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in 1985. The transplantation program, which is known as the Renal Transplantation Initiative, was designed as a response to the prevalence of end-stage kidney disease and the long waiting list for transplantation abroad. As the authors see it, following the foundation of the government-regulated and -funded living donation program in 1988 and the implementation of the Brain Death Organ Donation bill in 2000, Iran has built a legal, compensated, living-unrelated donation system, which has successfully saved many lives and eliminated the patient waiting list. Chapter 9 reports the findings of the interviews conducted in Tehran. These interviews investigated how people view organ donation and the relevant incentives. The data was collected from eighteen interviews with organ recipients, experts in the organ donation field, donors, and donors’ family members and shows that all interviewees believe deceased organ donation is an excellent source for transplantation which can help grieving families. There was also a consensus among interviewees that donors deserve some compensation, but they are more in favor of honorary incentives than compensationalist ones. Among the proposed compensationalist incentives, funeral expenses were the only option that all interviewees agreed with. Meanwhile, the impact of the familist incentives was believed to be limited. The interviews also found that public education is the preferred way of promoting organ donation in Iran. Chapter 10 discusses the barriers to donation, the role of different incentives, and Iran’s successful experience of promoting organ donation. Lack of knowledge regarding brain death, controversies in relation to compensationalist incentives for live donation vs brain-dead donation, and consent to donation on behalf of someone else are the three main barriers to overcome in order to improve organ donation in Iran. The authors in this chapter also reflect on the findings that compensationalist incentives were seen as sensitive and controversial, and that familist incentives were believed to have no significant effect on decisions in favor of organ donation. They argue that offering funeral expenses to deceased donors is appropriate in both compensationalist and honorary terms. It not only constitutes a symbol of respect for the deceased person and their family but also represents a compensational incentive to the grieving families, in addition to serving as an effective public education tool on the issues of brain death and donation. Part V consists of four chapters about the qualitative interviews and a quantitative survey carried out in Hong Kong. Chapter 11 outlines the development of the human organ transplant system in Hong Kong, whose key features are a soft opt-in system and a strict prohibition on commercial dealings in human organs for transplant. It shows that under this Hong Kong system, there is a lack of incentives for organ donation, whether cadaveric or living, and for family members to allow deceased donation. The authors investigate the shortage of organs for donation in Hong Kong and the limited success of the government’s promotion aimed at improving the number of donations, and describe the new alternative measures for improvement that the government has initiated. They argue that the feasibility and effectiveness of these alternative measures are limited and uncertain, concluding that more a radical reform of the existing system in terms of honorary, compensationalist, and familist incentives is needed and that all these incentives must be taken into consideration.

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Chapter 12 reports the findings of the in-depth interviews carried out in Hong Kong. Among the three types of incentive, Hong Kong is one of the places that provides honorary incentives to promote cadaveric organ donations. Most interviewees hold that this type of incentive is perfectly ethical, but that it is not very useful in motivating donation. They mention the following factors that hinder the effectiveness of honorary incentives in Hong Kong: limited public education regarding organ donation, inconvenient donation sign-up procedures, lack of sufficient donation coordinators, strict donation eligibility criteria, the cultural conservatism of “keeping an intact body after death” (held by at least some elderly people, according to our interviewees), and the policy of allowing family members to override a potential donor’s previous registration for donation. Regarding compensationalist incentives, most interviewees regard monetary compensation as ethically unacceptable, but agree that it would, if adopted, be most effective in stimulating donation. They suggest that paying for funeral expenses or offering a niche at a public columbarium for a cadaveric donor would be ethically acceptable because it would be seen as a way of showing respect to the deceased donor rather than as a way of paying monetary compensation. Finally, regarding the familist incentives, the interviewees express a very wide range of feelings, with some strongly supporting such incentives, but others believing they are unfair, even if effective. Chapter 13 summarizes the results of a quantitative survey carried out in Hong Kong. This survey was aimed at understanding the people’s feelings about or preferences for each of the three types of incentive for organ donation. For honorary incentives, 93.6% think that the government of Hong Kong should offer a niche in a public columbarium for a deceased donor (so that their cinerary casket can be placed in such a niche immediately without having to wait for a few years as is the usual case), and 71.2% believe that this would be a useful or very useful measure among all possible honorary measures to encourage cadaveric organ donation. For compensationalist incentives, most people do not support either the government’s or the recipient’s providing monetary compensation for a deceased donor’s family, but more than half (53%) support the proposal that the government pay for a deceased donor’s funeral expenses. For familist incentives, 94.9% hold that Hong Kong should learn from Israel, mainland China, and Taiwan to grant the families of donors priority for organ transplants, 92.6% believe that granting such a priority would be fair, and 68.2% believe that this would be useful or very useful in boosting cadaveric donation in Hong Kong. It is interesting to note that no one type of incentive has majority support as the most effective motivator for promoting organ donation, although a slightly higher percentage (35%) believe that familist incentives would be the most effective motivator, marginally more than is the case for honorary (31.6%) and compensationalist (33.4%) incentives. Chapter 14 provides conceptual and ethical comments on Hong Kong’s interview findings and survey results regarding the three types of incentive for organ donation, focusing on three particular conceptual and ethical issues. First, it indicates that there is not always a clear-cut distinction between an honorary and a compensationalist incentive measure for organ donation. Instead, a measure such as offering a public niche to a deceased donor in Hong Kong carries both honorary and

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compensationalist elements and can, as a mixed type of incentive measure, be ethically justified for adoption in that society, even if a purely monetary incentive measure cannot be ethically justified. Moreover, in relation to familist incentives in Hong Kong, namely giving priority for organ transplants to patients who have previously been live donors or with a first-degree family member as a past cadaveric donor, it is argued that no proposed opposing reason is ethically convincing. Finally, the chapter demonstrates that there are legitimate reasons to support maintaining Hong Kong’s familist decision-making model regarding organ donation. The last part of this book, Part VI, consists of two commentary chapters regarding the implications of our research findings, for Hong Kong and other societies, and attempts to propose a new model of incentives for organ donation. Chapter 15 is a comparative analysis of results reported in this volume from studies in mainland China, the United States, Iran, and Hong Kong regarding organ donation incentives. The author thinks the chapters in this volume reveal widespread (but not unanimous) support for honorary incentives (such as notes or ceremonies of gratitude) and significant support for familist incentives (offering the family members of a donor priority should they need an organ transplant in the future). Opinions on financial incentives were much more mixed, with significant worries expressed regarding potential exploitation and unfairness. The author believes that these interviews also reinforce the importance of the culturally appropriate structure of any steps to increase organ donation rates. Finally, the author remarks that in addition to their comments on various types of incentive, the interviewees in these chapters also offer insights into other measures that could be taken to increase organ donation rates. Finally, Chapter 16 discusses the legal implications for Hong Kong of the three types of organ donation incentive and presents further thoughts about their ethical and policy implications. It aims to transform the useful findings presented in previous chapters into legal solutions and policy innovations in practice. The authors argue that the Hong Kong law is able to incorporate mixed incentive measures and further suggest detailed legal rules regarding organ incentives for the government. In terms of the ethical and policy implications in a wider context, the authors suggest a paradigm shift in incentive structures to adopt mixed incentive measures for the promotion of organ donation and procurement. However, they agree that the exact choice or combination of organ incentive measures ultimately depends on how each society will assess their practical effectiveness, political legitimacy, and ethical justification.

References Ashkenazi, T., Lavee, J., & Mor, E. (2015). Organ donation in Israel—Achievements and challenges. Transplantation, 99(2), 265–266. https://doi.org/10.1097/TP.0000000000000591 Bagheri, A. (2006). Compensated kidney donation: An ethical review of the Iranian model. Kennedy Institute of Ethics Journal, 16(3), 269–282. https://doi.org/10.1353/ken.2006.0017 Cherry, M. J. (2005). Kidney for sale by owner: Human organs, transplantation, and the market. Georgetown University Press.

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Ghods, A.  J., & Mahdavi, M. (2007). Organ transplantation in Iran. Saudi Journal of Kidney Disease and Transplantation, 18(4), 648–655. Narayana, Health. (2020). Why living donor kidney transplant is better than deceased donor kidney transplant? Retrieved from https://www.narayanahealth.org/blog/ why-­living-­donor-­kidney-­transplant-­is-­better-­than-­deceased-­donor-­kidney-­transplant/ International Registry in Organ Donation and Transplantation (IRODaT). (2022a). Retrieved May 13, 2022 from https://www.irodat.org/img/database/pdf/Irodat%20April%202022_final.pdf International Registry in Organ Donation and Transplantation (IRODaT). (2022b). Database of Iran. Retrieved May 13, 2022 from http://www.irodat.org/?p=database&c=IR&year Israni, A. K., Zaun, D., Bolch, C., Rosendale, J. D., Schaffhausen, C., Snyder, J. J., & Kasiske, B.  L. (2017). OPTN/SRTR 2015 annual data report: Deceased organ donation. American Journal of Transplantation, 17(Suppl 1), 503–542. https://doi.org/10.1111/ajt.14131 Israni, A. K., Zaun, D., Rosendale, J. D., Schaffhausen, C., McKinney, W., & Snyder, J. J. (2021). OPTN/SRTR 2019 annual data report: Deceased organ donors. American Journal of Transplantation., 21(Suppl 2), 521–558. https://doi.org/10.1111/ajt.16491 Irving, M. J., Tong, A., Jan, S., Cass, A., Rose, J., Chadban, S., et al. (2012). Factors that influence the decision to be an organ donor: A systematic review of the qualitative literature. Nephrol Dial Transplantation, 27(6), 2526–2533. https://doi.org/10.1093/ndt/gfr683 Ministry of Health, PRC. (2010). Basic principles of human organ allocation and sharing and core policies for liver and kidney transplantation in China. The Ministry of Health Document No. 113 (2010). Retrieved May 15, 2022 from http://www.fsou.com/html/text/chl/1515/151533.html OPTN/SRTR 2015 Annual data report: Introduction. (2017). American Journal of Transplantation, 17(Suppl 1), 11–20. https://doi.org/10.1111/ajt.14123 OPTN/SRTR 2019 Annual data report: Introduction. (2021). American Journal of Transplantation, 21(Suppl 2), 11–20. https://doi.org/10.1111/ajt.16493 Research Office, Legislative Council Secretariat. (2021). “Organ donation: Statistical highlights” (ISSH15/20–21). Hospital Authority. Retrieved May 20, 2022, from https://www.legco.gov.hk/ research-­publications/english/2021issh15-­organ-­donation-­20210114-­e.pdf Stoler, A., Kessler, J. B., Ashkenazi, T., Roth, A. E., & Lavee, J. (2016). Incentivizing authorization for deceased organ donation with organ allocation priority: The first 5 year. American Journal of Transplantation, 16(9), 2639–2645. https://doi.org/10.1111/ajt.13802 Vanholder, R., Domínguez-Gil, B., Busic, M., Cortez-Pinto, H., Craig, J. C., Jager, K. J., et al. (2021). Organ donation and transplantation: A multi-stakeholder call to action. Nature Reviews Nephrology, 17, 554–568. https://doi.org/10.1038/s41581-­021-­00425-­3

Part II

Beijing Papers

Chapter 2

The Background to Organ Donation in Mainland China Guangkuan Xie and Yali Cong

2.1 Healthcare in Mainland China Mainland China is the main part of the People’s Republic of China, with a population of more than 1.4 billion people (National Bureau of Statistics of China & National Commission of China Healthcare Statistics, 2020) in 4 municipalities directly under the Central Government, 23 provinces and 5 autonomous regions (as of 2019). The National Health Commission of the People’s Republic of China (NHC) is the primary authority for all hospitals in the country. There were in total 34,354 hospitals by the end of 2019, and 1516 are termed 3A hospitals, which are regarded as top-level hospitals (National Bureau of Statistics of China & National Commission of China Healthcare Statistics, 2020). Most of the 3A hospitals are equipped with modern facilities and are located in major cities (such as Beijing, Tianjin, Shanghai, Guangzhou, and Shenzhen). Apart from hospitals, there are 15,958 public health institutions (such as Centers for Disease Control at different levels). In 2019, total expenditure on health care was RMB 6584.139 billion (c. 975 billion USD, one RMB is approximately 0.15 USD). As of 2019, the infant mortality rate was 5.6 deaths per 1000 live births, and life expectancy was 77.3 (National Bureau of Statistics of China & National Commission of China Healthcare Statistics, 2020). Since 1949, the CPC government has established a basic insurance system with a significant division between urban and rural areas. In the past two decades, the central government tried to promote urban and rural integration (Ding & Zhang, 2020). As of 2020, the basic medical insurance schemes covered 1.36 billion people, with a coverage rate above 95 percent (Wang, 2021). However, the range of

G. Xie (*) · Y. Cong School of Health Humanities, Peking University, Beijing, China e-mail: [email protected]; [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 R. Fan (ed.), Incentives and Disincentives in Organ Donation, Philosophy and Medicine 133, https://doi.org/10.1007/978-3-031-29239-2_2

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diseases and therapies paid for or reimbursed by such schemes varies dramatically from province to province or municipality to municipality. The total costs of an organ transplant, including those for organ procurement and maintenance, transplant operation, hospital fees, and anti-rejection drugs after the operation, are very high. In most regions of mainland China, the basic health insurance schemes can only cover a small amount of such total costs. That means recipients themselves and their families have to pay the significant additional costs. Different provinces and cities provide different coverages based on their capacities, and some cover far more than others. For example, Jiangsu province has done very well in this regard. Its basic insurance scheme can pay for about 75% of the total amount of transplant expenses for a recipient, and the scheme covers all four major organs, namely the kidney, the liver, the lung, and the heart (Xinhua Daily, 2009). Through our informal investigation, we found that the total costs of a lung transplant were 500,000–600,000 RMB (75,000–90,000USD) in Jiangsu province, and the recipient would only need to pay for 150,000–200,000 RMB, with the rest covered by the insurance scheme. In the case of Beijing, coverage only exists for kidney transplants and this basic insurance scheme is limited to the costs of the operation itself and other hospital-related charges. Anti-rejection drugs for organ transplant recipients have generally been covered by the basic health insurance schemes in every region. The National Healthcare Security Administration has made a list identifying the drugs covered by the basic medical insurance. However, the medical insurance catalogue distinguishes between two classes of drugs: Class A drugs are all reimbursed, while Class B drugs have different reimbursement ratios in various provinces and cities. Usually, cyclophosphamide and most glucocorticoids belong to Class A, and immunoglobulin belongs to Class B (National Healthcare Security Administration, 2021). Some imported immunosuppressive agents, such as rabbit anti-human thymocyte immunoglobulin, are also covered by some provinces under their insurance schemes (Comed, 2017). It is expected that more and more drugs will be covered under the basic insurance schemes.

2.2 The Development of Organ Transplantation in Mainland China Dr. Wu Jieping at a hospital in Beijing performed the first successful kidney transplant operation in China in 1960, which initiated organ transplants in China (Yuan & Ma, 2019). After years of development, China now ranks second in the world in terms of the number of organ transplants. By December 31, 2019, 173 medical institutions in mainland China were qualified for organ transplantation. The top six provinces were Guangdong (19 institutions), Beijing (17), Shandong (13), Shanghai (11), Hunan (9), and Zhejiang (9). There were also 121 organ acquisition organizations (OPO); the top six provinces and cities by number were Beijing (17 OPOs),

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Guangxi (9), and Hubei, Shandong, Shanghai, and Chongqing with eight each (Huang, 2020). Since 2015, deceased donations (DD) by Chinese citizens have developed rapidly. From January 1, 2015, to December 31, 2019, there were 24,112 deceased donations; the number of such donations increased from 2766 in 2015 to 5818 in 2019, and the organ donation rate per million population (PMP) increased from 2.01 in 2015 to 4.16 in 2019 (Fig. 2.1). During 2021–2022, the rate of deceased organ donations kept increasing, despite the negative influence of the Covid-19 pandemic (Fig. 2.2). Figure 2.3 shows the new increased numbers from February 2021 to April 2022. By the end of April 2022, 4,700,914 people had registered as organ donors, and 39,647 deceased donors had donated 119,240 organs (China Organ Donation Administrative Center, 2022). Comparatively, living organ donation rates in mainland China are much lower than those for deceased donations. During 1972–2005, there were only 539 living kidney donations (Yuan & Ma, 2019) and the PMP for living organ donations was no more than 2 in 2015–2019 (Huang, 2020). The leading causes of deceased donors’ death are trauma and cerebrovascular accidents and the proportion of donors who died due to cerebrovascular accidents increased yearly (Fig. 2.4). Patients who have undergone severe cerebrovascular trauma are often very difficult to treat, and most of them have fallen into a deep coma before death, and therefore cannot express their wishes on their own behalf. When family members decide whether to donate the patient’s organs, they cannot solicit the donor’s own wishes. If the patient has not explicitly expressed their opposition to organ donation

Fig. 2.1  Number of deceased organ donations in Mainland China, 2015–2019. (Data source: Huang, 2020)

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Fig. 2.2  Number of deceased organ donations in Mainland China, 2021–2022. (Data source: China Organ Donation Administrative Center, 2022)

Fig. 2.3  Increase in the number of donations each month, February 2021–April 2022. (Data source: China Organ Donation Administrative Center, 2022)

before death, their consent can be presumed by the family and the donation made. In mainland China, death remains a major taboo topic for many people, and few will clearly express to their families whether they are willing to donate organs after death. Whether such family decisions on behalf of a patient are in line with the patient’s true wishes is a controversial issue which we will discuss in subsequent chapters. On the other hand, the number of patients awaiting organ donation is increasing year by year. According to one statistic, by the end of 2019 there were 47,382

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Fig. 2.4  Proportion of donors who died from cerebrovascular accidents in Mainland China 2015–2019. (Data source: Huang, 2020)

Fig. 2.5  Number of patients awaiting organ transplantation in 2015–2019, Mainland China. (Data source: Huang, 2020)

patients awaiting a kidney, 4763 a liver, 338 a heart, and 89 patients awaiting lungs. The demand for transplantable organs far exceeds the supply and the organ utilization rate clearly needs to be improved. In 2019, the average number of each type of organ produced by each individual donor was 1.89 for kidneys, 0.93 for livers, 0.12 for hearts, and 0.15 for lungs (Huang, 2020) (Fig. 2.5).

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2.3 Important Legislation and Landmark Policies in Recent Years In 2006, the former Ministry of Health issued the “Interim Provisions on Clinical Application and Management of Human Organ Transplantation,” which required transplantation hospitals to conduct the technical access review, unify standards, and stringent management (Ministry of Health of the PRC, 2006). In 2007, the Chinese government promulgated the first “Regulations on Human Organ Transplantation” (State Council of the PRC, 2007), while the Ministry of Health issued the “Notice on Issues Related to Organ Transplantation of Foreign Persons Applicants” in the same year, prohibiting transplant tourism (Ministry of Health of the People’s Republic of China, 2007). In 2009, the “Ministry of Health Regulations on Regulating Living Organ Transplantation” was promulgated (Ministry of Health of the PRC, 2009). It stressed the need for government agencies to supervise the process and that medical institutions were responsible for ensuring the voluntary nature of donations. In 2010, the Ministry of Health issued a letter authorizing the Red Cross Society of China to carry out activities in relation to human organ donation. According to this letter, the Red Cross Society of China shall perform a range of tasks, including publicity and mobilization, registration, donation testimony, remembrance, and rescue and encouragement, as well as the establishment of a national human organ donor information database and the establishment and management of a human organ donation fund (Ministry of Health of the PRC, 2010). In 2011, the Standing Committee of the National People’s Congress of the PRC (SCNPC) passed the “Criminal Law Amendment (8),” adding the crime of “organ trading“and prohibiting the sale of organs (SCNPC, 2011). The China Organ Transplant Response System (COTRS) began to operate in the same year, and distribution was conducted through the COTRS computer system. In 2012, the “Opinions of the State Council on Promoting the Development of the Red Cross Cause” were issued, proposing to explore the establishment of a donation fund for human organ donation in Red Cross Societies above the provincial level to provide necessary humanitarian aid assistance to donor families (State Council of the PRC, 2012). In 2013, the former National Health and Family Planning Commission issued the “Provisions on the Administration of the Human Organ Procurement and Allocation (Interim)” to ensure the open, fair, and traceable distribution of human donated organs (National Health and Family Planning Commission of the PRC, 2013). In 2016, China‘s transportation, aviation, railway, and other departments established a green channel for organ transport, and in 2017, China revised the Red Cross Law to promote organ donation. In 2018, the China Health Commission issued a notice to amend the core policies for liver and kidney transplantation and formulated core policies for the distribution and sharing of hearts and lungs, drawing up the “Basic Principles and Core Policies for the Distribution and Sharing of Human Organs in China” (National Health Commission of the PRC, 2018).

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In January 2019, the National Health Commission revised the “Management Regulations on the Acquisition and Distribution of Human Donated Organs (Trial)” and drew up the “Management Regulations on the Acquisition and Distribution of Human Donated Organs” (National Health Commission of the PRC, 2019). The “Civil Code of the People’s Republic of China” promulgated in May 2020 stipulates the ownership of donated remains, human organs, and human tissue and expressly prohibits the sale of human bodies. (NPC, 2020). In 2021, the National Health Commission, National Development and Reform Commission, Ministry of Finance, and some other PRC government agencies published “Measures for the Charges and Financial Management of the Acquisition of Human Donated Organs” (National Health Commission of the PRC, 2021). It determined compensation in the form of donor costs. China allowed organ donations from executed prisoners for a long time, and many foreigners came to China to receive organ transplants. The media have reported that in 2004, of the 507 liver transplant operations performed by a particular organ transplant center in mainland China, Koreans accounted for about 37%, while other foreigners accounted for about 16% (Cheng, 2007). In 2007, the Ministry of Health of the People’s Republic of China issued the “Notice of the General Office of the Ministry of Health on Issues concerning Applicants for Organ Transplantation by Foreign Persons.” This notice expressly prohibits medical institutions and their medical staff from performing organ transplants for foreign citizens visiting mainland China in the name of tourism. The use of organs from executed prisoners had placed the Chinese government and transplant doctors under intense external pressure, hindering the healthy development of China‘s organ transplantation program. On December 3, 2014, China‘s National Human Organ Donation and Transplantation Commission officially announced a total ban on the use of organs from executed prisoners. In addition to these national laws, regulations, and policies, Shanghai, Tianjin, Shandong, and other places have also promulgated “Regulations on Human Organ Donation” and “Regulations on Remains Donation” since 2000. In 2000, the “Regulations on the Donation of Remains in Shanghai Municipality” and other documents originally formulated mainly emphasized that the donation of corpses should follow the principle of voluntariness and encouraged the donation of corpses through publicity and government commendations. The “Regulations on the Donation of Remains in Shandong Province” passed at the meeting of the Standing Committee of the Ninth People’s Congress of Shandong Province on January 12, 2003. Article 24 of these regulations stipulates: “the donor‘s close relatives can enjoy certain preferential treatment by the regulations of the provincial health administrative department.” However, the rules did not specify the scope of the donor‘s “close relatives,” nor did they list the specific preferential measures that these immediate relatives could enjoy. On August 22, 2003, Shenzhen Special Economic Zone passed the “Regulations on Donation and Transplantation of Human Organs.” Like the regulations issued by Shandong, the Shenzhen document also gave a priority right to the immediate relatives of deceased donors for organs if needed.

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Other provinces have followed these examples. The “Regulations on the Donation of Remains and Organs of Fujian Province” was passed on 2 June, 2005, and stipulate that relatives of deceased donors have priority for organ transplants. The precise scope of those relatives is specified: “the close relatives of the donor refer to the donor‘s spouse, parents, children, siblings, grandparents and grandchildren.” Since then, Tianjin City, Hubei Province, Nanjing City, Yunnan Province, and Ningxia Hui Autonomous Region, among others, have also followed this definition when formulating the regulations for deceased organ donations. The “Regulations on the Donation of Remains and Cornea of Heilongjiang Province” were promulgated in December 2009 and the “Regulations on the Donation of Remains and Human Organs of Chongqing Municipality” in March 2016. Both stipulate that relatives’ priority can only be enjoyed by the donor‘s spouse, parents, and children. In response to the differences in these local regulations, the “Basic Principles and Core Policies for the Distribution and Sharing of Human Organs in China,” issued by the National Health Commission of China in 2018, specified that after the death of a organ donor, his/her “ immediate family members, spouses, and collateral blood relatives within three generations,” will be given priority to get an organ(during the organ distribution) when they need organ transplantation. The policy- makers wanted to encourage citizens to donate organs after death. In these local regulations, some incentive measures are also provided. The Red Cross, for example, is responsible for a range of activities such as issuing a certificate of honor for human organ donation to the donor‘s relatives, establishing a memorial facility for human organ donation, setting up a memorial website, provide a suitable location where donors can be remembered, and organize and carry out memorial activities (Table 2.1).

2.4 The Organ Donation Operation System At present, the human organ donation and transplantation system in mainland China comprises five systems: organ donation, organ procurement and allocation, organ transplant service, quality control, and a regulatory system. The organ donation system includes public promotion, registration, witness on donation and allocation, memorial activities, and humanitarian aid.

2.4.1 Public Promotion Public promotions are mainly carried out by the Red Cross Society of China, organ procurement organizations in hospitals, and the media. They publicize the significance of organ donation through the Internet, television, radio, terrestrial advertisements, and school education, organize meetings, and encourage the public to register with the voluntary organ donation system (Fig. 2.6).

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Table 2.1  Legal and policy landmarks related to organ transplantation in China Year Policy name 2006 Interim Provisions on Clinical Application and Management of Human Organ Transplantation 2007 Regulations on Human Organ Transplantation 2007 Notice on Issues Related to Organ Transplantation of Foreign Persons Applicants (Ban on Organ Transplantation Tourism) 2009 Regulations on Regulating Living Organ Transplantation 2011 The 8th Amendment to the Criminal Law 2013 Human Organ Procurement and Allocation Management Regulations (Interim) 2016 Notice on the Green Channel for Donated Human Organ Transport 2017 Red Cross Law (revision) 2018 Basic Principles and Core Policies for the Distribution and Sharing of Human Organs in China 2019 Management Regulations on the Acquisition and Distribution of Human Donated Organs

Policymaker The former Ministry of Health The State Council The Ministry of Health

The Ministry of Health Standing Committee of the National People’s Congress(SCNPC) The former National Health and Family Planning Commission The former National Health and Family Planning Commission and other Standing Committee of the National People’s Congress The National Health Commission of China The National Health Commission

Data source: Summarized by the author

Fig. 2.6  Mainland China organ donation and transplant scheme. (Data source: Huang, 2020)

2.4.2 Registration Some organ donors in mainland China have registered in the Organ Donation Volunteer Registration System during their lifetime. While others had not so registered, their family members opted to agree to donate after communication with an

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Fig. 2.7  Causes of deceased donors’ death in Mainland China 2015–2019. (Data source: Huang, 2020)

OPO. The leading causes of death for postmortem organ donors were trauma and cerebrovascular accidents, which accounted for 86.2% of all such cases (Fig. 2.7). When a patient has just died or is about to die due to trauma or a cardio-­ cerebrovascular accident and cannot be treated, the organ coordinator will contact the family members and, sensitively, inquire whether the patient has expressed a willingness to donate organs, or, if this is not the case but the patient has not explicitly objected to such a donation, whether the family members agree that a donation can take place. If the family members agree to donate, the patient’s information will be entered into the COTRS computer system to match the donated organs with organ transplant recipients.

2.4.3 Witnessing Donation and Allocation Medical units that carry out organ transplants have organ transplant ethics committees. They conduct ethical and scientific reviews of patients who intend to receive organ transplants and who are listed on the organ transplant waiting list after being entered on the COTRS “Human Organ Transplant Waiting List System.” When a match is found between someone on the waiting list and a deceased donor, the corresponding clinician will secure the donor‘s organs and dispatch them through the computer distribution system for transplantation and follow-up. During this

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process, the donor‘s family usually has no contact with the recipient or their family members. The Red Cross will act as a third party to witness the organ donation and carry out remembrance and necessary relief work during this process. The human organ transplantation quality control system collects data, analyzes that data, and controls transplant operations, while the human organ regulatory system supervises and manages the entire process.

2.4.4 Memorial and Humanitarian Aid Chinese Red Cross Societies engage in a range of memorial activities, such as issuing honorary human organ donation certificates to donors’ relatives, establishing memorial facilities and memorial websites for human organ donation, and providing places for remembrance. Many provincial Red Cross Societies (such as in Zhejiang, Hubei, and Henan) have special programs for organ donors, termed “humanitarian aid” (人道救助专项 资金) or “hardship allowance for a donor’s family” (捐献者困难家庭救助金). These special programs are funded by Red Cross societies, local governments, and patients waiting for organ transplantations. Families of donors in financial difficulties can apply for aid, such as for medical expenses and funeral services. Such policies are very controversial and we will discuss them further in the two following chapters.

2.5 Concluding Remarks After decades of rapid development, the number of organ transplantations in China has grown enormously, and it now ranks first in Asia and second only to the US globally. The organ transplantation and donation policy system are constantly improving, and it has initially established a set of human organ donation and transplantation systems similar to those in the United States. However, the existing policies are not detailed enough in terms of the specific implementation process. Publicity aimed at Chinese citizens regarding organ donation after death still needs to be improved and the proportion of citizens who have registered as organ donors is relatively low. The attorney consent of family members for organ donation after the death of a relative still accounts for a large proportion of cases. Organ donation and acquisition in China is carried out by a professional team comprising medical staff, organ donation coordinators, and administrative personnel. If donor family communication and public relations and health education specialists were also invited to participate, this would be beneficial in promoting organ donation.

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References Cheng, G. (2007, December 18). China Prohibits Performing Organ Transplants for Foreign Citizens Visiting Mainland China in the Name of Tourist(zhongguo jiaoting qiguanyizhi lvyou, 中国叫停 “器官移植旅游.”) [in Chinese]. Southern Weekend. Retrieved May 26, 2022, from https://www.infzm.com/contents/9556 China Organ Donation Administrative Center. (2022). China Organ Donation Administrative Center [in Chinese]. Retrieved May 29, 2022, from https://www.codac.org.cn Comed. (2017). Imported immunosuppressive agents are covered by medical insurance in 17 provinces (jinkou minyizhiyaowu 17shengshi yibao baoxiao, 进口免疫抑制药物 17省市医保报销) [in Chinese]. Sohu News. Retrieved May 26, 2022, from https://m.sohu. com/a/197208594_100106 Ding, H. X., & Zhang, S. F. (2020). From segmentation to integration, the transformation process of China’s urban and rural basic medical insurance system since the founding of the People’s Republic of China [in Chinese]. Chinese Journal of Health Policy, 13(4), 1–9. Huang, J.  F., (Eds.). (2020). Report on organ transplantation development in China (2019) [in Chinese]. Tsinghua University. Ministry of Health of the PRC. (2010, April 28). A letter from the ministry of health on entrusting the red cross society of china to carry out work related to human organ donation.(weishengbu guan yu wei tuo zhongguo hong shi zi hui kaizhan renti qiguan yizhi youguan gonguo de han,卫 生部关于委托中国红十字会开展人体器官捐献有关工作的函) [in Chinese]. Retrieved May 26, 2022, from https://www.stredcross.org.cn/article/detail/article/191.html Ministry of Health of the PRC. (2006, March 27). Notice of the ministry of health on printing and distributing the interim regulations on the administration of clinical application of human organ transplantation technology (renti qiguan yizhi jishu linchuang yingyong guanli zanxing guiding, 人体器官移植技术临床应用管理暂行规定) [in Chinese]. Retrieved May 26, 2022, from http://www.nhc.gov.cn/yzygj/s3585u/200804/b6e135abbdba4372b111015571f903dc.shtml National Healthcare Security Administration of the PRC. (2021). National health insurance, catalogue of the PRC (2021). (guojia yibao mulu, 2021国家医保目录) [in Chinese]. Retrieved May 26, 2022, from http://www.nhsa.gov.cn/art/2021/12/3/art_37_7429.html National Bureau of Statistics of China & National Commission of China Healthcare Statistics (Eds.). (2020). China health healthcare statistical yearbook 2020 (2020 zhongguo weisheng jiankang tongji nianjian, 2020 中国卫生健康统计年鉴) [in Chinese]. Peking Union Medical College Press. Ministry of Health of the PRC. (2007, July 3). Notice on issues related to organ transplantation of foreign persons applicants (weishengbu bangongting guanyu jingwai renshi shenqing renti qiguan yizhi xiangguan wenti de ­tongzhi,卫生部办公厅关于境外人员申请人体器官移植有 关问题的通知) [in Chinese]. Retrieved May 26, 2022, from http://www.gov.cn/zwgk/2007­07/03/content_670963.htm Ministry of Health of the PRC. (2009). Regulations on regulating living organ transplantation [in Chinese]. Retrieved May 26, 2022, from http://www.cnnb.com.cn/dwhzlm/system/2013/05/23/007730340.shtml National Health and Family Planning Commission of the PRC. (2013, August 13). Provisions on the administration of the human organ procurement and allocation (Interim) (renti juanxian qiguan huoqu yu fenpei guanli guiding, 人体捐献器官获取与分配管理规定) [in Chinese]. Retrieved May 26, 2022, from http://www.gov.cn/gongbao/content/2013/content_2528125.htm National Health Commission of the PRC. (2018, August 3). Basic principles and core policies for the distribution and sharing of human organs in China (zhongguorenti qiguan fenpei yu gongxiang jiben yuanze yu hexin zhengce,中国人体器官分配与共享基本原则和核心政 策) [in Chinese]. Retrieved May 26, 2022, from http://www.nhc.gov.cn/yzygj/s3586/201808/ d35d96f2db82403ebe2ba41f2c583896.shtml

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National Health Commission of the PRC. (2019, January 17). Management regulations on the acquisition and distribution of human donated organs (renti juanxian qiguan huoqu yu fenpei guanli guiding, 人体捐献器官获取与分配管理规) [in Chinese]. Retrieved May 26, 2022, from http://www.gov.cn/gongbao/content/2019/content_5397751.htm NPC. (2020, June 2). Civil code of the People’s Republic of China (zhonghuarenmingongheguo minfadian, 中华人民共和国民法典) [in Chinese]. Retrieved May 26, 2022, from http://www. npc.gov.cn/npc/c30834/202006/75ba6483b8344591abd07917e1d25cc8.shtml National Health Commission of the PRC. (2021, July 13). Measures for the charges and financial management of the acquisition of human donated organs (renti juanxian qiguan huoqu shoufei he caiwuguanli banfa, 人体捐献器官获取收费和财务管理办法) [in Chinese]. Retrieved May 26, 2022, from https://zwfw.nhc.gov.cn/kzx/zcfg/yljgrtqgyzzyzgddsp_240/202107/ t20210723_2157.html SCNPC. (2011, February 25). PRC criminal law amendment (8) (刑法修正案八) [in Chinese]. Retrieved May 26, 2022, from http://www.gov.cn/zhengce/2011-­02/25/content_2602254.htm State Council of the PRC. (2007, April 6). Regulation on human organ transplantation (renti qiguan yizhi tiaoli,人体器官移植条例) [in Chinese]. Retrieved May 26, 2022, from http:// www.gov.cn/zwgk/2007-­04/06/content_574120.htm State Council of the PRC. (2012, July 10). Opinions of the state council on promoting the development of the red cross cause (guowuyuan guanyu cujin hongshizihui shiye fazhan de yijia,国务 院关于促进红十字事业发展的意见) [in Chinese]. Retrieved May 26, 2022, http://www.gov. cn/zhengce/content/2012-­07/30/content_6072.htm Wang, K. (2021, September 15). China to improve medical insurance system to better meet people’s healthcare needs (from the website of the People’s Republic of China, the State Council). Retrieved June 2, 2022, from http://english.www.gov.cn/premier/news/202109/15/content_ WS6141f29ac6d0df57f98e038f.html Xinhua Daily. (2009, June 18). Jiangsu province will implement the policy with a new reimbursement scope for medical insurance diagnosis and treatment services in July (jiangsusheng qiyue jiang tongyi shishi xinde yibao zhenliao fuwu baoxiao fanwei, 江苏省7月将统一实施新的医 保诊疗服务报销范围) [in Chinese]. Retrieved July 1, 2022, from http://www.gov.cn/govweb/ gzdt/2009-­06/18/content_1343566.htm Yuan, H., & Ma, Q. (2019). Ethics of living organ donation and transplantation [in Chinese]. Shanghai Jiao Tong University Press.

Chapter 3

Mixed Incentives, Different Voices: A Qualitative Study of Organ Donation Incentive Policies in Two Big Chinese Cities Jian Tang and Guangkuan Xie

3.1 Introduction In 2020, the number of deceased organ donations in the People’s Republic of China (PRC) ranked second globally (5222), but the donation rate per million population (PMP) was only 3.61, which was below the world median (International Registry in Organ Donation and Transplantation, 2020). There is a big gap between the number of organ donors and the number of potential recipients on organ transplantation waiting lists (Huang, 2016, 2020). In today’s China, donating organs to strangers after a person’s death seems psychologically more difficult than donating organs to a family member, even if that means one will have to be a living rather than a deceased donor. Evidently, issues of organ donation inevitably involve contemporary Chinese people’s actual views on the importance of the body, the meaning of death, and the value of the family, as well as trust or distrust of individuals and their families in social justice and relevant health care systems (Yu, 2017). The investigation of people’s attitudes toward and ideas about different types of incentives for organ donation can help us understand the practical and ethical issues of organ donation more deeply and further help expand the discussion of relevant policies on incentives for organ donation in China (Hu et al., 2014; Teng & Peng, 2016; Wang & Jiang, 2016; Wang & Fan, 2017). We conducted a research project in mainland China with three primary objectives: (1) to review mainland China’s institutional progress in organ donation policy reform; (2) to understand how China’s current three prevailing organ donation J. Tang (*) School of Medical Humanities, Tianjin Medical University, Tianjin, China e-mail: [email protected] G. Xie School of Health Humanities, Peking University, Beijing, China e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 R. Fan (ed.), Incentives and Disincentives in Organ Donation, Philosophy and Medicine 133, https://doi.org/10.1007/978-3-031-29239-2_3

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incentive methods (honorary, compensationalist, and familist) have been run in practice; and (3) to clarify what particular incentives should be adopted in mainland China with a view to successfully implementing our policy recommendations for improving organ donation rates. Beijing and Tianjin were selected as the research bases from 2019 to 2021, and research was mainly conducted through qualitative interviews. We chose these two cities mainly for the following reasons: first, the demand for organ transplantation mainly occurs in economically developed regions, and organ transplantation surgeries are only performed in big cities. Due to the concentrated population and economic resources available in these two large cities, the number of urban residents who can afford the economic cost of organ transplantation is relatively large. Thus, people in large cities have accumulated more experiences in organ donation, making it more convenient for us to find suitable interviewees. However, there are some differences between the two mega-cities. As the capital of China, Beijing is also the political and economic center of China, and has substantial medical professional resources. There are many organ transplantation centers in Beijing, which run their own Organ Procurement Organizations (OPOs). However, Beijing has no written local regulations on organ donation, and the Red Cross Society in Beijing generally does not participate in organ donation witness work. In contrast, in 2012, Tianjin passed the Tianjin Municipal Regulations on Human Organ Donation (China Daily, 2012). This legal act was unique in the sense that it exclusively focused on the regulation of organ donation issues. Prior to Tianjin’s regulation, the legal norms of organ donation by other local authorities in China were applied to regulate transplantation and organ donation issues. In addition, the Tianjin Red Cross Society participates in and greatly influences the organ donation processes of the city’s medical institutions. Organ transplants in Tianjin are concentrated in a large organ transplant center, a medical facility that drives the city’s organ donation efforts. Second, two members of the research group were originally from the two medical colleges in Beijing and Tianjin respectively, and they could use their professional networks to find suitable medical professional interviewees in the transplant field with whom to conduct interviews. Neither Beijing nor Tianjin, both large municipalities in northern China, can fully reflect the current situation of organ donation for all of China, but the problems exposed in these two places are relatively representative. Moreover, as the two cities are municipalities directly under the central government, they have a unique political status and are easier to consider as objects of public policy formulation and implementation. We interviewed 18 persons familiar with organ donation in the two cities (Table 3.1). Each was interviewed for about an hour face-to-face but, where deemed appropriate and for the purpose of increasing the depth of the information gathered, some were interviewed several times, up to three times each, and for up to two hours each time. Anonymity was guaranteed by only using initials instead of interviewees’ real names and where oral consent was granted the interviews were recorded. For those interviewees who did not consent to recording, written notes were taken. The research period coincided with the centralized rectification of the nationwide organ transplantation system in China in 2019. Affected by this policy atmosphere,

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Table 3.1  Information about interviewees Interviewee background (Organ donation stakeholders) Organ recipient Organ recipient’s family member Donor’s family member Regional organ donation program manager/policymakers OPO members/organ donation coordinators Transplant doctors/nurses Medical ethicists Other people familiar with organ donation (e.g., registered donors) Total

Number of interviewees Beijing Tianjin 1 0 1 0 0 2 1 2 1 2 2 1 1 0 2 2 9 9 18

Data source: Summarized by the author

relevant medical staff were particularly cautious in any discussion of actual organ donation issues and were especially careful about what they said during the interviews; most of them were unwilling to allow their interviews to be recorded. The interviewees were identified through a snowballing process, starting with doctors who then recommended other potential candidates. Interviews were held in interviewees’ offices, conference rooms, cafés, and other relatively quiet and convenient locations. Each individual was offered a nominal honorarium, which some interviewees declined. The research proposal was approved by the Peking University Institutional Review Board.

3.2 Honorary Incentives Local governments and Red Cross societies in mainland China provide some honorary incentives for organ donation. For example, the Red Cross Societies have implemented measures such as issuing honorary human organ donation certificates to the relatives of deceased donors, establishing memorial facilities and memorial websites for human organ donation, providing places for remembrance, and organizing memorial activities. However, most interviewees were not very familiar with the provisions of various honorary incentives and those they mentioned were mainly examples such as memorial gardens and tombstones engraved with the donor’s name. Interviewees were generally receptive to honorary incentives and agreed that donors should be given recognition. For example, Mr. Z, an organ recipient, considered honorary incentives as part of the process of giving credit to the donor, making both donor and family members feel honored. He believed that “Incentives like honorary certificates are necessary, expressing the highest salutations and condolences to donors and their families.”

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However, many interviewees questioned the practical effects of honorary incentives. One physician who was familiar with organ transplantation articulated his viewpoint through a comparison between China and the United States. He argued that these honorary incentives work well in the United States, but “don’t work well” and are not really motivating in China. The reason is that, according to him, the level of economic development in China is lower than in the United States, and many people face economic difficulties, so the demand for honorable incentives is not as strong as that for economic incentives. Moreover, he adds, there are different cultural views on honor in China and the West. He said, “In the United States, people value honor more than other things because the US has a short history and is less influenced by traditional culture. Western medicine and Chinese medicine do not see the body in the same way.” Compared with cultural influences, the impact of economic factors is more obvious in contemporary China. According to one interviewee who supervises organ transplants at a hospital, “Honorary incentives work with some people while they do not work with others. For the poor, it is most helpful to give them money. Honorary incentives don’t work for the poor. The key is to solve their financial problems.” Another interviewee, Ms. W, a transplant nurse, also pointed out that whether honorary incentives can work depends on certain economic and social conditions: “One is that the education level and social civilization of the whole society have reached a certain level and people are rich, so it is possible for honorary incentives to achieve their desired effect. The second is that health insurance coverage should be broader, at least covering people’s medical treatment and the healthcare costs associated with donation. That is, people can treat their illnesses without having to pay out of their own pockets.” In the current unified informed consent form for organ donation, there are two options: (1) whether they are willing to have their names engraved on a monument, and (2) whether they will allow details to be disclosed for media publicity and coverage. We found that most of the donor’s families chose to have the deceased donor’s name engraved on the relevant monument as a form of recognition, but did not agree that the information surrounding the donation could be used for public media coverage. In relation to this contradiction, Ms.TH, an OPO staff member, explained: The donor family believe that honorary incentives are consistent with the reasons for their donation decisions, but at the same time, they are unwilling to be publicly reported, indicating that organ donation is not widely accepted at the social level, and that public reporting may cause them inconvenience or trouble, such as being questioned by their relatives or acquaintances for deciding to donate their deceased family member’s organs.

However, an opposite viewpoint emerged in an ethical review of an organ donation case in which members of the research group participated. The donor’s family declined to have the donor’s name engraved on the monument, but agreed that the facts of the donation could be used for publicity purposes. The OPO staff who participated in the donation process explained to the ethics committee that the family believed that, “The reason why they chose to donate organs is to help others rather than pursue honor, and publicity and reporting is conducive to the promotion of organ donation.”

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The function of honorary incentives lies not only in a society’s affirmation of the honor associated with helping strangers, but also in the fact that government should be encouraging the public to change its traditional view of death, a view that impedes organ donation. In traditional Chinese culture, it is believed that one should maintain a state of tranquility and avoid disturbing the body after death, and family members are obliged to protect the integrity of the dead body (even though in contemporary China, with exceptions for certain ethnic minorities who can still choose to bury their dead relatives, the law requires cremation of the dead). However, organ procurement inevitably destroys the integrity of the body after death, so many people find it hard to accept. Moreover, the traditional Chinese view of life and death, which emphasizes the family’s obligation to take care of their members, often pushes people to insist on continuous medical treatment until the patient stops breathing. This means it may be difficult for family members to accept brain death as the criterion of death to facilitate deceased organ donations. During our research, we were unable for a long time to find a deceased organ donor’s family willing to be interviewed. It seems that the donation of a relative’s organs may result in a double psychological trauma for the donor‘s family: one is the death of the relative, and the other the destruction of the body’s integrity, so the donor‘s family is reluctant to recall this painful experience through an interview. One member of an OPO explained, “Many decisions to donate organs are likely to be associated, not with a sense of altruistic honor, but only a certain sense of shame, and family members may even feel guilty, so they adopt an evasive attitude [in talking about it].” In part, this sense of guilt or shame may result from the fact that the deceased had not clearly expressed their wishes to donate before death. For example, Life Matters (人间世), a well-known medical documentary in China, recorded the expressions of the parents who decided to donate the organs of their 24-year-old son, who was suffering from a brain tumor and was in a brain-dead state. The donor’s parents said, “Our family is in great pain and we don’t want other families to suffer the same pain.” The family cried out when confronted with their son’s remains, “Mom and Dad did not cure you and had to say goodbye to you, while all your useful organs will instead be donated to other sick people. This is the choice that Mom and Dad made without consulting with you. Please forgive us” (Nan, 2020). In our research, we found situations in which families were afraid distant relatives or acquaintances would find out about their donation decisions. Some families would initially agree to donate, but would then change their minds when they learned that they still needed to issue official information that would become known by other people, including distant relatives and acquaintances. For example, one donor was unmarried. Her father was deceased, and her mother decided to donate. However, when she was required to fill out official documentation to prove that the father was deceased and she was the decision maker, the mother abandoned the donation. Her reason for the final refusal was that she felt “ashamed to let her acquaintances know about the donation of her loved one’s organs.” Fortunately, the research group eventually found a donor family who agreed to be interviewed at the end of this two-year interview program. One member of this research team, who provides ethics consultation to an OPO, came across a family

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who was donating and who expressed their willingness to speak publicly about the donation. With the help of the organ donation coordinator, an interview with the family was carried out. This interview was different from others and was conducted in a small group: the donors’ parents, the coordinator, and the interviewer. The interviewer had a dual role, as the OPO’s ethicist, and as researcher on this project. Moreover, the timing and location of the interview were very special: it was after the patient had been declared brain dead, it was conducted at the same time as the organ procurement operation, and the interview location was in the OPO office. The interviewer had asked whether a follow-up interview could be arranged instead, but the experienced coordinator believed that if the interview were not conducted right away, the family would refuse it later, just as so many others did. The interviewees were parents who had decided to donate the organs of their 16-year-old child who had been in the ICU for a month after an accidental brain injury. The donor‘s father said, We had never considered donation before, but finally accepted the fact that the child had died. The ICU doctor suggested that we consider organ donation when discussing the child’s end-of-life care decision with us. After the coordinator communicated with us, we made a decision to donate. We hope that donating organs can help others, and we believe that the child’s life will be still going on. This is the main reason impelling us to make this decision. We are not seeking honor, nor do we want money.

The grieving mother added, We just feel a lot of psychological pressure...I want to apologize to my child, we couldn’t cure her...We are a traditional big family, and the decision to donate has also been discussed with other relatives. Some relatives who believe the donation will help others support the decision, and other relatives clearly oppose it and blame us for breaking traditional customs, so we have been hesitant.

Throughout the interview process, the two parents constantly sought certain responses or positive answers from the researcher as they believed our perspective would represent a “proper ethical stance.” For example, they repeatedly asked “Our choice is correct, right?” When the organ procurement operation had been completed, the coordinator presented the parents with the donation certificate of honor, which they held tightly in their arms. The interview had to end then because the parents were too emotional. We also found that families are usually not aware of an individual’s wishes to donate while alive. An OPO member explained it as a technical factor. It is difficult to communicate the registration information concerning potential donors to an OPO, thereby creating a barrier to donation coordination. This is because the current medical information system and the organ donation information system have not been connected or unified, resulting in an inability to effectively identify organ donor registrants at the clinical setting, which in turn prevents individuals’ donation intentions from ultimately being honored. Besides this technical barrier, most interviewees considered the cultural barrier is much more influential. It’s indicated that discussing death issues within the family is still not the norm, and that society has not yet moved beyond this cultural taboo.

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In sum, based on our interview results, there is a broad consensus on the ethical justifiability of honorary incentives. However, the interviewees also generally considered the practical effectiveness of honorary incentives unsatisfactory. At the same time, some traditional Chinese values or customs on issues related to death and bodily integrity may have an obvious negative impact on family members’ decision making in relation to deceased organ donation. Our findings suggest that the future reform of honorary incentives should be considered in ways that will effectively engage with positive cultural values and attempt to counteract negative ideas about organ donation. Their effect and function also need to be improved and expanded, going beyond the mere formality of offering an official donation certificate.

3.3 Compensationalist Incentives Most interviewees believe that financial compensation exists in organ donation practice in mainland China, and many believe that financial compensation is currently the most effective incentive. However, in terms of its ethical propriety, different interviewees hold different opinions. The compensationalist incentives have primarily been offered in terms of paying for basic funeral expenses and the facilitation of burials for donors. However, the scope and criteria for such exemptions and facilitation vary from province to province and from city to city due to their different policies. For example, a local proposal in Zhejiang Province sets a relatively high standard (Zhejiang Provincial Department of Finance, 2012). In addition to waiving basic funeral expenses, it also provides a maximum of CNY 3000 (c. US$ 450) for spending on funeral services, as well as a subsidy of CNY 10,000 (c. US$ 1500) for the purchase of a columbarium niche for storing a donor’s ashes. In 2017, the Working Committee of the Chinese Hospital Association suggested the Temporary Measures for Cost Accounting and Fund Management of Human Organ Acquisition and Transplantation (Organ Procurement and Distribution Management Working Committee of Chinese Hospital Association, 2017), which suggests further clarifying and expanding the scope of compensation for (1) medical expenses, such as resuscitation expenses incurred after the donor’s family have signed the donation confirmation; (2) escort expenses, travel expenses, lost wages, accommodation expenses, living expenses, and funeral expenses incurred by the donor’s relatives during the donation process; (3) medical expenses during the donor’s hospitalization in the ICU; and (4) that all payment for these expenses not covered by insurance should be reimbursed by the organ transplant organization. This is, however, a professional association guideline and is not legally binding. In 2021, China’s National Health Commission, National Development and Reform Commission, and seven other departments jointly developed and issued The Measures for Charges and Financial Management of Human Organ Procurement

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(National Health Commission of the PRC, 2021), which allows for and regulates compensation in the form of donor costs: “The direct costs of a donor’s organ acquisition mainly include: organ-donor-related costs, organ-acquisition-related costs, costs associated with the donor’s family, etc.” In addition, according to the current normative requirements for donation in China, a valid donation decision also requires the full consent and signature of the next of kin, so there will also be necessary expenses incurred by the family as a result of the donation. For families living in a different location from the donor, higher expenses may be incurred. Accordingly, this policy states: “The costs related to an organ donor’s family mainly include the costs of transportation, accommodation, and allowances for lost work during the period when the family of the organ donor is handling organ donation matters in accordance with the law.” This is the most authoritative policy regarding the financial aspects of organ donation. This document provides the first public confirmation of the reasonableness of paying lost wages or transportation costs for a donor’s family. Current organ donation practice in China includes an important and unique form of compensation known as “Hardship allowance for a donor’s family” (捐献者困难 家庭救助金). This financial aid, primarily aimed at helping families in financial difficulty, can have a significant impact on family donation decisions . It is also the most ethically controversial policy. According to the policy designers’ interpretation, this allowance is humane and caring in nature, not meant to be an incentive for the sale of any organ, and cannot be considered as mere financial compensation (Huang, 2020). This financial aid is important because pilot studies of human organ donation indicated that 90% of donors’ families faced hardship (Bai, 2013). This policy takes into consideration the financial difficulties of the relevant families, especially the hardship caused by their reduced income due to the loss of a loved one. At present, this family financial aid system is still only a policy at local governmental levels. For example, Hubei, Henan, and Hainan have established a publicly available system to which donors’ families can apply to alleviate their hardships (Hubei Red Cross Society, 2015; Henan Red Cross Society, 2018; Hainan Red Cross Society, 2018). Reading through these local policies, we can summarize the following elements from their relief grant systems: (1) donation occurs first and relief comes later; (2) it is not given automatically, donor families must apply for it; (3) it is only given to families who meet the hardship criteria, including relief of medical expenses and family hardship relief, and an upper limit for the relief amount is set; and (4) the fund is developed under a policy that requires multiple sources for that funding: “a little from government investment, a little from hospital support, a little from social fundraising, and a little from the beneficiaries.” The policy is backed by the government but is implemented by a non-governmental organization, the Red Cross Society (Standing Committee of the National People’s Congress of the PRC, 1993). The aid takes the form of a one-time cash grant, determined based on the economic level of each location, with no uniform nationwide standard. According to the publicly available information in these provinces, the average relief amount is about CNY 50,000 (c.US$ 7400). In Hubei Province, for example, a relief policy was

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released in 2015 with a relief rate of CNY 50,000–90,000 (c.US$ 7400–13,300) depending on the poverty level of the donor family (Hubei Red Cross Society, 2015), and data from 2015 to 2019 show that Hubei Province ranks second among provinces in the country in terms of the number of donations (Huang, 2020). However, there is insufficient evidence to clearly suggest that the number of donations is positively correlated with the motivational effect of this allowance policy. Currently, Chinese organ donors come from two important sources: victims of cerebrovascular accidents and of severe trauma, both emergency cases. Thus, their families are in a very difficult situation: in deciding on behalf of their loved ones whether their organs should be donated, they are under a double pressure, timing difficulty and financial difficulty. For these two serious conditions, treatment is often carried out in Intensive Care Units (ICUs), but it is very expensive, and many services require payment by the patient or family. Even where health insurance exists, usually only a very small percentage of the total cost is reimbursed. In the case of patients with cerebrovascular accidents or trauma, their families have to face the possibility of their loved ones passing away at any moment on the one hand, and the threat of very high medical costs on the other. If at this moment, someone persuades a family that organ donation can reduce medical costs or possibly provide financial relief, it may have an enormous impact on a family under both emotional and financial stress as they try and make their decision regarding donation. Indeed, the Civil Code of the People’s Republic of China states that the use of force, deception, or inducement by any organization or individual to obtain a donation is prohibited (National People’s Congress of the PRC, 2021). Does the financial aid in this complex situation constitute “inducement” as prohibited by the law? The issue is most controversial. In addition, the idea of a non-financial aid system for donors’ families to alleviate their life difficulties has been broached. This approach is reflected in a consensus professional guideline published by a professional society called the Organ Transplantation Branch of the Chinese Medical Association (Branch of Organ Transplantation of Chinese Medical Association, 2019). This document states that the aid for a donor’s family suffering hardships should not be limited to financial forms of assistance but should also include various other forms of help and assistance, such as help with employment, school entrance for children, and legal assistance. This advocacy document was developed by a professional group who did not have access to specific policies publicly implemented by provinces and municipalities regarding providing non-financial aid for the families of donors experiencing hardship. According to some of our interviewees, if such policies were implemented, they might be more effective than economic incentives. For example, Ms. W, who is familiar with organ donation practices, and Mr. ZY, a registered donor, suggested that in addition to the basic expenses, the general intention was to help the donor’s family with their urban household registration, and provide education funds for their children and retirement security for their parents. Transplant doctor L pointed out in his interview that the organ donors he met were mostly migrants and students working in cities. Many of these people come from poor families in the countryside and belong to low-income groups, while

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donors rarely come from high-income groups. Mr. T, a hospital administrative director involved in coordinating organ donation in the hospital, also pointed out that nine out of ten donors’ families are poor and many of them cannot afford the donors’ medical expenses, so they are very concerned about post-donation compensation. “To the poor, it is best to give them money,” he said. Dr. L also believed that, monetary subsidies are an effective incentive for donor families who have already spent a lot of money on medicine and even borrowed a lot of money to treat the condition of their family member (a potential donor). For them financial compensation is deserved. And such compensation incentives should be in place, and should likewise be offered following honorary incentives.

Indeed, most interviewees expressed the view that some type of financial compensation was reasonable and should not be viewed as inducing the sale of an organ. For example, Ms. Z, an organ recipient’s family member, believed that it was reasonable to provide funeral and medical expenses to the donor family. However, Ms. Z did not think it right to use direct money (such as cash) as an incentive, because “harming the patient for the sake of money” had to be avoided—that is, giving up useful treatment in order to obtain money. Mr. W, the director of an OPO office, believed that only medical expenses can be compensated for, and the government civil affairs department could help pay for some of the costs faced by the elderly from poor families and the tuition fees of younger children. “It has to be different from inducing organ sales. Financial incentives can be given in many ways, such as to the donor’s family, the elderly can be sent to a public nursing home, their child can be exempted from tuition fees and their family can enjoy certain social welfare benefits… That’s what the country can offer him, and I think that’s good, too.” At the same time, she explicitly opposes organ trafficking, stressing that “the poor should not become organ banks for the rich.” Mr. Z, the recipient, agrees that it is important to avoid sliding into the organ trade: “What’s the difference between humans and animals that can be sold? ... It is no longer ethical to buy and sell people.” Similarly, Nurse Q mentioned in her interview that such compensation runs the risk of organ trading, which is difficult to regulate if it is offered. She believes that, “It is important for the government to set a limit for the total amount of compensation, which should partly be from the government and partly paid by the recipient.” Some interviewees were opposed to any type of compensation. Dr. Y, a medical ethicist, said that she could not accept any monetary or material compensation for organ donation and did not support any financial compensation for donors or their families. She said, “Giving money or any other kind of compensation may certainly cause some people to change their minds from not agreeing to donate to ‘agreeing’ to donate because there will always be people who will change their original perceptions because of the involvement of money.” One organ policymaker offered another argument against any kind of compensationalist incentives, acknowledging the important effect of money in decision making: “but if money is taken too seriously, there is a risk that doctors may not be motivated to save the patient and some families may give up on the patient. Organ donation should be encouraged in terms of morals and rights, and money should not have a role.”

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As investigators, one of us observed a conversation between an organ coordinator and a donor’s family regarding compensation offers. The coordinator stated that the OPO would cover the donor’s funeral and medical expresses and accommodation and transportation costs for the family, given that a donation decision had been made. The family expressed no reluctance regarding these forms of compensation. However, when the coordinator said that the OPO could also help them to apply for the hardship allowance for the family, the parents responded, “If we got that money, we would feel that we are selling our daughter.” Based on the findings of our interviews, compensationalist incentives have been quite effective in current Chinese organ donation practice. Most interviewees supported the offering of basic funeral and medical expenses for deceased donors. However, some interviewees opposed any kind of compensationalist incentives, including hardship allowances for the families, for fear of running the risk that the appropriate treatment of the patient might be negatively affected.

3.4 Familist Incentives The familist incentive currently operating in China is reflected in a family priority right for access to organs for transplantation if needed. Specifically, this incentive refers to the regulation that the family members of a donor who successfully donated organs after death will receive priority if in need of an organ for transplantation. This regulation has been made in the hope of encouraging deceased organ donation. China’s organ donation policy adopts a hybrid individual-family decision-­ making model which gives weight not only to the individual but also to the family for decisional power (Cai, 2015; Fan & Wang, 2019). Article 106 of the Civil Code of the People’s Republic of China confirms two circumstances that qualify Chinese citizens for organ donation after death: first, individuals who have reached the age of 18 and have full mental status can make an independent decision to donate by registering to become a donor during their lifetime; second, for individuals (including minors and individuals with no or limited civil capacity) who have not expressed their disapproval of donation during their lifetime, their spouse, adult children, and parents can jointly decide to donate their organs after death (National People’s Congress of the PRC, 2021). However, family decisions are not necessarily in line with the real wishes of the deceased. In the new organ donation registration system launched in 2021, registration is available online, which is very convenient, can be done via mobile phone, and can be canceled or changed at any time (Red Cross Society and National Health Commission of the PRC, 2021). Moreover, the registration system encourages donor registrants to inform their families rather than making it a requirement, which promotes the possibility of individual self-determination. However, once the donation process is initiated after the death of a citizen, a written confirmation from the family is required. In other words, whether or not the family is aware of the donor’s own wishes, if the family decides not to sign the acknowledgment during the

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donation process, the donation is not possible. Since China does not formally recognize the brain death criterion by law, the nature of brain death remains a technical criterion for clinical expertise. Therefore, if a family member agrees to donate, the approval of the family member is also required as to whether the organ should be harvested at the stage of brain death or after cardiac death, as well as whether ECMO (Extracorporeal Membrane Oxygenation) should be used to maintain the organ (Branch of Organ Transplantation of Chinese Medical Association, 2019). In the current regulatory system, the familist priority incentive is stated in the Basic Principles and Core Policies for Human Organ Allocation and Sharing in China (National Health Commission of the PRC, 2018), developed by the National Health Commission. It has also been stipulated in some provincial and municipal regulations, but it has not been confirmed in the original or revised Organ Transplantation Regulations (State Council of the PRC, 2007). Accordingly, this priority incentive is actually in force only in some provincial and municipal regulations but not at the national level. However, not all provinces have developed such a norm, and not all the provinces that have done so have made it public. Our research group analyzed familist incentive-­related norms in 16 provinces and major cities in the PRC, whose regulations can be publicly accessed from the China Human Organ Donation Management Center, an official and authoritative organization in China’s organ donation system (China Organ Donation Administrative Center, 2022). We found that the formulation of this family priority incentive is not consistent. The preconditions for the application of existing priority vary with the scope of family members. The earliest policy to introduce this familist incentive was Shandong’s 2003 Regulations on the Donation of Remains in Shandong Province, which states in Article 24 that “Close relatives of the donor may enjoy certain preferences for the clinical use of human tissue following the regulations of the provincial health administrative department” (Shandong, 2003). In 2003, the Regulations on Human Organ Donation and Transplantation in Shenzhen Special Economic Zone clearly stated: “Patients whose close relatives have donated human organs shall have priority in receiving human organ transplants. The order of patients who also enjoy priority shall be determined by the Municipal Red Cross according to the time of application for registration” (Shenzhen, 2003). The 2005 Regulations on Donation of Human Remains and Organs in Fujian Province stipulates that “If a person donates an organ for a recipient who is not designated, he or she and his or her close relatives shall have priority in receiving organs donated by others for transplantation.” It goes on to specifically list the scope of close relatives: “Close relatives of the donor are the donor’s spouse, parents, children, siblings, grandparents, and grandchildren” (Fujian, 2005). This definition of the scope of priority has since been followed by Tianjin (2013), Hubei (2014), Nanjing (2015), Yunnan (2016), and Ningxia (2020) when formulating regulations on body and organ donation. However, the Heilongjiang Province Regulation on Donation of Human Remains and Corneas (Heilongjiang, 2009) and the Chongqing City Regulation on Donation of Human Remains and Organs (Chongqing, 2016) stipulate that the scope of the priority of relatives can only be enjoyed by the donor’s spouse, parents, and children, excluding siblings, grandparents, and grandchildren.

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Most of our interviewees supported this familist priority incentive. The main reasons for their support were: (1) China is a country that places great importance on family relationships, and this priority setting is in line with traditional Chinese cultural ethics; and (2) There are similar priority provisions in Chinese blood donation, and this priority has been supported by society. Several interviewees lacked confidence in the role that such a priority right could play. Some interviewees pointed out that the proportion of immediate family members of donors who need organ donation is very low, and the probability of such a priority being exercised is therefore also very low. The fact that blood donation priority has not been implemented well in practice also affects interviewees’ confidence in this policy. According to China’s Blood Donation Law (Standing Committee of the National People’s Congress of the PRC, 1998), blood donors and their spouses and other immediate family members are entitled to free blood transfusions when needed under the specific regulations of the people’s governments of each province, autonomous region, and municipality, but this preference is not well implemented. Doctor L said in an interview, “Family priority doesn’t work because priority is not really an issue for blood transfusions.” Other interviewees raised concerns that such a policy might have negative effects, “leading to the possibility that people who receive organs at the time of organ allocation will be conditional on whether they had a family member who had previously donated and therefore are not being treated fairly; it may also have an impact on family integrity, but how big this impact would be cannot be predicted.” When the interviewer also informed the donor’s family members that they would get this priority, they responded, “Fine, but we don’t care about it.” Ms. TH, a senior OPO member, expressed personal concerns about applying family priority: “When an organ donor coordinator identifies a suitable potential donor and attempts to communicate with the family, that family is in a very emotionally vulnerable state; if the family is informed at this time that a future organ transplant priority will be granted to them, it may constitute a cultural taboo for the family—seeming to imply that the family will also be in a situation where they will need an organ transplant in the future.” In a similar vein, asking for and marking an organ donation preference when applying for a motor vehicle driver’s license could also easily constitute a psychosocial taboo (foreshadowing unsafe driving) and be difficult to promote. In addition, a situation may arise that tends to exacerbate the sense of social injustice. Donor families can have priority because their loved one donated an organ in the past. But because they are usually low-income people, even if they need an organ transplant in the future, they may not be able to take appropriate advantage of this priority because they will be unable to pay for the expensive operation. In other words, if in the future a member of their family were indeed to become ill and be eligible for an organ transplant, they may be too poor to pay for the procedure. This situation of “having the right but not being able to exercise it” may have a significant negative impact on the social credibility of this incentive policy. To sum up, there was no obvious opposition among our interviewees to the familist incentive, but it seems that in practice this incentive has not been taken

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seriously by organ donation stakeholders. Although the familist incentive has been written into some Chinese regulations, it is not regarded as an important contributing factor in increasing donation rates. Most interviewees, even including the experienced OPO members, did not rate its importance highly.

3.5 Conclusion With these findings, we can confirm that all three types of incentives—honorary, compensationalist, and familist—coexist in current organ donation practice in mainland China (Ding & Fan, 2020), but the findings do not allow us to conclude which incentive type is most effective. Our interviewees had different views on each of the three incentive types, suggesting that there is still a lack of broad consensus among the various types of organ donation stakeholders regarding suitable incentive measures. We see that China’s current organ donation policy is also undergoing rapid reform, from central to local levels, with a significant number of important national norms introduced in 2021. However, the effectiveness and justifiability of these policies regarding incentives should be subject to long-term observation and ethical evaluation. We will further discuss relevant important ethical and policy issues in Chap. 4.

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Fujian. (2005). Standing committee of the Fujian provincial People’s Congress of PRC. Regulations of Fujian province on remains and organ donation [in Chinese]. Retrieved July 3, 2022, from http://hsz.qzlc.gov.cn/zcfg/201107/t20110705_1583430.htm Hainan Red Cross Society. (2018). Interim measures for the administration of special funds for humanitarian assistance to families in difficulty in organ donation by the hainan red cross society [in Chinese]. Retrieved July 3, 2022, from http://www.hainanredcross.org/u/cms/ www/202101/27102047mdps.pdf Heilongjiang. (2009). Standing committee of the heilongjiang provincial People’s Congress of PRC.  Regulations of Heilongjiang Province on donation of corpse and cornea of PRC [in Chinese]. Retrieved July 3, 2022, from https://www.hlj.gov.cn/n200/2011/0121/ c75-­10138221.html Henan Red Cross Society. (2018). Administrative measures for human organ donation relief fund in Henan province [in Chinese]. Retrieved July 3, 2022, from https://www.haredcross.org/ attachment/ue/file/20201030/1604060286802069643.pdf Hu, D., Yue, J., & Huang, H. (2014). Reflections on the establishment of incentive mechanism for organ donation in China [in Chinese]. Medicine & Philosophy, 35(8), 20–22. Huang, J. (2016). The development process and prospect of organ donation in China [in Chinese]. Medical Journal of Wuhan University, 37(4), 517–522. Huang, J. (Ed.). (2020). Report on the development of organ transplantation in China (2019). Tsinghua University Press. Hubei. (2014). Standing committee of the Hubei provincial People’s Congress of PRC. Regulations on human organ donation in Hubei province [in Chinese]. Retrieved July 3, 2022, from http://119.36.213.154:8088/fgk/index_xq.jsp?Rileid=560 Hubei Red Cross Society. (2015). Hubei province human organ donation relief fund use management measures [in Chinese]. Retrieved July 3, 2022, from http://www.hbsredcross.org.cn/ gsgg/113178.jhtml International Registry In Organ Donation and Transplantation. (2020). Database of China. Retrieved February 15, 2022, from https://www.irodat.org/?p=database&c=CN#data Nan, N. (2020, September 2). Why are family members of organ donors afraid to be interviewed? (qiguan juanzengzhe jiashu, weihe bugan jieshou caifang) [in Chinese]. The Paper (Peng pai xinwen). Retrieved July 3, 2022, from https://m.thepaper.cn/baijiahao_8990297 Nanjing. (2015). Standing committee of the nanjing municipal People’s Congress of PRC. Regulations of Nanjing municipality on body and organ donation [in Chinese]. Retrieved July 3, 2022, from http://www.npcxj.com/index.php/Mobile/Lew/info/type1/difangxingfaguiguizhang/id/14577.html National Health Commission of the PRC. (2018). Basic principles and core policies for human organ allocation and sharing in China [in Chinese]. Retrieved July 3, 2022, from http://www. nhc.gov.cn/yzygj/s3586/201808/e500298b06d744f39f29421f6cd91761.shtml National Health Commission of the PRC. (2021). Measures for the charges and financial management of the acquisition of human donated organs [in Chinese]. Retrieved July 3, 2022, from http://www.nhc.gov.cn/yzygj/s3586/202107/b521a975d0c842ee9d59e624d3de021b.shtml National People’s Congress of the PRC. (2021). Civil Code of the People’s Republic of China [in Chinese]. Retrieved July 3, 2022, from http://www.npc.gov.cn/npc/c30834/202006/75ba648 3b8344591abd07917e1d25cc8.shtml Ningxia. (2020). Standing committee of the People’s Congress of Ningxia Hui autonomous region of PRC.  Regulations on cornea donation in Ningxia Hui autonomous region [in Chinese]. Retrieved July 3, 2022, from http://www.nxrd.gov.cn/rdlz/lfgz/fglb/202008/ t20200803_196881.html Organ Procurement and Distribution Management Working Committee of Chinese Hospital Association. (2017). Temporary measures for cost accounting and fund management of human organ procurement and transplantation [in Chinese]. Medical Journal of Wuhan University, 6, 112–114.

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Red Cross Society, National Health Commission of PRC. (2021). Measures for the administration of human organ donation coordinators [in Chinese]. Retrieved July 3, 2022, from https://www. redcross.org.cn/html/2021-­05/78447.html Shandong. (2003). Standing committee of the shandong provincial People’s Congress of PRC. Regulations on the donation of remains in Shandong Province [in Chinese]. Retrieved July 3, 2022, from http://www.shandong.gov.cn/art/2003/2/10/art_107851_91781.html Shenzhen. (2003). Standing committee of shenzhen municipal People’s Congress of PRC.  Regulations on human organ donation and transplantation in Shenzhen special economic zone [in Chinese]. Retrieved July 3, 2022, from http://www.gd.gov.cn/zwgk/wjk/zcfgk/ content/post_2530808.htm Standing Committee of the National People’s Congress of the PRC. (1993). Red cross law of the People’s Republic of China [in Chinese]. Retrieved July 1, 2022, from http://www.gov.cn/ banshi/2005-­08/01/content_18932.htm Standing Committee of the National People’s Congress of the PRC. (1998). Blood donation law of the People’s Republic of China [in Chinese]. Retrieved July 3, 2022, from http://xxgk.beihai. gov.cn/bhswshjhsywyh/zcfgzl_84786/zcfg_88762/202107/t20210707_2434890.html State Council of the PRC. (2007). Human organ transplantation regulations [in Chinese]. Retrieved July 3, 2022, from http://www.gov.cn/zwgk/2007-­04/06/content_574120.htm Teng, L., & Peng, T. (2016). A preliminary study on the incentive mechanism of organ donation based on human organ distribution and sharing system [in Chinese]. Chinese Health Service Management, 3, 187–189. Tianjin. (2013). Standing Committee of Tianjin Municipal People’s Congress. Tianjin municipal regulations on human organ donation [in Chinese]. Retrieved July 3, 2022, from http://www. tjrd.gov.cn/flfg/system/2013/04/08/010013487.shtml Wang, M., & Fan, R. (2017). Organ donation and distribution: Defending the family first principle in China [in Chinese]. Chinese Medical Ethics, 30(10), 1187–1191. Wang, F., & Jiang, J. (2016). On the construction of human organ donation incentive mechanism [in Chinese]. Journal of Xichang University (Social Science Edition), 18(3), 69–72. Yu, C. (2017). The continuation of life: The global context and local practice of organ transplantation [in Chinese]. China Social Sciences Press. Yunnan. (2016). Standing Committee of the People’s Congress of Yunan of PRC. Regulations on human organ donation in Yunnan Province [in Chinese]. Retrieved July 3, 2022, from http:// www.cxzhszh.org.cn/file_read.aspx?id=370%27 Zhejiang Provincial Department of Finance. (2012). Our province implements financial subsidies for funeral expenses of human organ donors [in Chinese]. Retrieved July 3, 2022, from http:// czt.zj.gov.cn/art/2012/8/10/art_1164177_713799.html

Chapter 4

Organ Donation Incentives in Mainland China: Ethical Commentaries and Reform Recommendations Jian Tang, Guangkuan Xie, and Yali Cong

4.1 Ethical Commentaries on the Incentives for Organ Donation in Mainland China According to the research results as reported in Chaps. 2 and 3, we found a variety of different views on each of the three types of incentive for organ donation (namely honorary, compensationalist, and familist) in mainland China. Our interviewees support different incentive modes and have different opinions on each type of incentive. This chapter will lead a further ethical discussion on each of these three types of incentive in reference to some relevant literature (e.g., Lou et  al., 2016; Ravitsky, 2013).

4.1.1 On the Honorary Incentives Honorary incentives in mainland China are designed with two aims in mind. First, to encourage a potential donor to decide to donate: they may be stimulated to donate in order to gain honor, because the honor itself can constitute a psychological benefit to this person. Second, for society, providing an honorary incentive can constitute a kind of social education activity: its purpose is that the society should affirm and encourage individuals or families to contribute to strangers through organ donation, rather than only for their own individual interests or the interests of J. Tang School of Medical Humanities, Tianjin Medical University, Tianjin, China e-mail: [email protected] G. Xie · Y. Cong (*) School of Health Humanities, Peking University, Beijing, China e-mail: [email protected]; [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 R. Fan (ed.), Incentives and Disincentives in Organ Donation, Philosophy and Medicine 133, https://doi.org/10.1007/978-3-031-29239-2_4

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their families. The essence of the approach is to praise altruism. Based on our interview findings, the research team summarized three representative viewpoints on this type of incentive as follows. 1. The legitimacy of the honorary incentive type has been widely recognized. The essence of honorary incentives lies in the social recognition of altruism, which is undoubtedly embodied in organ donation, and recognizes the appropriateness of acknowledging a donor’s contribution. As one interviewee put it, such honor should be given, “to express the highest respect for and to comfort the donors and their families.” The ethical propriety of honorable incentives should be fully affirmed. 2. However, the effect of honorary incentives is quite limited in practice. At present, it seems that only donors’ families are aware of and recognize this kind of honor, rather than a general public awareness which could lead to the creation of a supportive social environment for organ donation. For example, although thematic websites in honor of organ donors have been set up, they are only visited by donors’ relatives. Memorial parks in memory of organ donors have been built, but they are usually built in remote suburban areas and are again visited only by the donors’ relatives. Thus, the current ways of providing honorary incentive measures, even if they are ethically good, are not practically effective in enabling society as a whole to recognize the honor associated with organ donation. Consequently, the families of deceased donors hardly feel honored. Chinese society needs to look for more effective methods of providing honorary incentives so as to make them not only ethically altruistic but also practically useful in order to motivate potential donors and their families to donate. 3. The motivation effect of honorary incentives alone may be relatively minor. Interviewees generally believe that their motiving effect will be significantly reduced if the practical and economic problems that donors and their families face cannot be solved, or at least alleviated. Although some interviewees hold that there is a cultural difference between the West and China in this regard (which can be roughly summed up as “Westerners value honor while Chinese value benefit”) as we report in Chap. 3, we think this claim oversimplifies the complexities of Chinese and Western cultures and fails to explain real problems. We think both Western and Chinese people are similarly motivated by honorary incentives, but their different responses to honorary incentives must be related to different levels of economic development and distinctively different healthcare systems. While China has made significant economic progress in recent decades, its economic development has been uneven, and many aspects of the social security system still require further reform and development. For example, some patients and their families have chosen living donor transplants (where the organs are donated by a family member) rather than cadaveric organ transplants, in part because for a living donor transplant they will only need to pay for the costs of operations, while for a cadaveric donor transplant they will also need to pay the costs of organ procurement and maintenance and other associated charges. Currently, Chinese social health insurance does not cover the costs of an

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organ transplantation operation. Therefore, those patients who can afford organ transplants are usually those with certain economic advantages. Simply adopting honorary incentives will not work unless there is significant progress in reforming the social security system and the health insurance coverage it offers. It may even lead to a strong suspicion in society in general that organ donation is designed to help the better-off while posing as a form of altruism, exploiting the poor for the benefit of the rich. It may even demean the ethical value of donation itself. Historically, China’s organ procurement and allocation system did lack transparency and justice (Huang et al., 2015) and organ donor families may fear that they are participating in an unfair distribution system. Moreover, some families may think that only low-income families are willing to donate organs to obtain some kind of compensation, so they feel a kind of shame is associated with a decision to donate. This had all led to a complex interplay between such feeling of shame, the function of honor incentives, and the economic and social system. Finally, because some families may still be influenced by a traditional taboo that family members should not discuss issues in relation to death, plus the fact that organ donation registries were not linked to organ procurement systems until the 2021 reform, families often do not really know the true wishes of potential donors and fear that a decision to donate might be contrary to the wishes of the deceased. All these factors have resulted in a situation in which honorary incentives for donation are of little use. To sum up, honorary incentives can be ethically justified, but they may not be very motivating in current Chinese practice.

4.1.2 On Compensationalist Incentives In the research, we found that various sorts of compensation are commonly available for the families of deceased organ donors in China today but the attitudes of our interviewees toward them are quite different and even contradictory. We summarize various compensationalist policies in Table 4.1. 4.1.2.1 On the Interviewees’ Conflicting Viewpoints on Compensation Generally, there are two conflicting viewpoints on compensationalist incentives. 1. Supporting viewpoint. We think the supporting view as expressed by some of our interviewees as reported in Chap. 3 can be understood and explained from a utilitarian perspective. This type of incentive is direct, clear, and highly efficient in contemporary Chinese society. For the donors, it would be good to know that their donation would not only help others, but also bring about some benefit to their families. For the families, certain types of compensation can help relieve

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Table 4.1  Human organ donation compensation policies Compensation items Donors’ funeral expenses Medical expenses incurred after the donor’s family members sign to confirm the donation Expenses incurred by the donor’s family in the process of donation, such as transportation, accommodation, and loss of earnings. Donor’s ICU medical expenses

Payer Local governments OPOs

Financial aid for donor’s families experiencing hardship Non-financial aid for donor’s families experiencing hardship, such as employment, education, and legal aid.

Red cross societies

OPOs

Organ transplant hospitals

OPOs, organ donation administrative offices, red cross societies

Note Regulations in most provinces Measures for the Charges and Financial Management of the Acquisition of Human Donated Organs (National Health Commission of the PRC “People’s Republic of China (PRC)” (2021).

Trial Measures for Cost Accounting and Fund Management of Human Organ Procurement and Transplantation (CHA, 2017) Guidelines in some provinces (CHA, 2017)

Data source: Summarized by the author

their burdens and improve their standard of living. For the recipients, donated organs can save their lives. Accordingly, it seems every relevant person is gaining and becoming happier as a result of the motivating effect of compensationalist incentives. 2. Opposing viewpoint. First, providing compensation seems to create an unclear boundary between compensation and organ sale, which will depreciate the moral value of donation. It may even tempt a donor’s family to make an improper and unethical donation decision. Second, under an economic compensation policy, it is impossible to guarantee the voluntary nature of a donation, as mentioned by one interviewee: “Giving money or other compensation will, of course, make some people change their minds, and those who would normally never agree to donate will become those who agree to donate.” Indeed, our research has found that among all the different sorts of compensation involved in current practice, the most controversial one is the financial aid to the donor’s family because this monetary incentive measure is direct, and the amounts involved are significant. Perhaps its incentive effect is the most obvious—indeed, compensationalist incentives in general may in practice be the most motivating type in China today—but the potential for ethical controversy is evident. We do not think that all forms of compensation are ethically indefensible and should be banned absolutely. However, we suggest that the forms of compensation should be carefully limited in order to avoid sliding toward what could constitute organ trading. Among these forms, the financial aid for a donor’s family

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experiencing hardship is the most difficult one to justify in terms of ethical considerations unless we are adopting a purely utilitarian perspective. We will deliberate on this issue in the following subsection. 4.1.2.2 On Financial Aid for a Donor’s Family Experiencing Financial Hardship The ethical concerns surrounding financial aid for a donor’s family experiencing hardship arise from the apparent financial inducement this offers (Capron & Sun, 2017). However, from the perspective of traditional Chinese culture, money is often an important way to express gratitude, reflecting the willingness of the beneficiaries to repay the favor performed. It is often explained and even stressed that the policy is designed as “humanitarian aid,” not as a business transaction. However, we are concerned that, despite common sense and good design motives, there is a risk of institutional abuse that creates implicit institutional support for organ trafficking. In fact, this incentive measure has been criticized by the international bioethics community (Capron et al., 2016). Skeptics emphasize that the Principle of Financial Neutrality (“donors and their families neither lose nor gain financially as a result of donation”) should be fully implemented in organ donation (Danovitch et al., 2021), which was stated in the updated version of the Declaration of Istanbul in 2018 (Martin et  al., 2019). Such a position is also based on the premise of individual liberalism, advocating that choice-making without an economic element can be fully justified ethically in term of individual autonomy. Accordingly, critics believe that the financial incentive system is essentially a disguised interest inducement, which can easily become organ trafficking, taking advantage of the disadvantaged position of a family in difficulty, and thereby having a seriously negative impact on a country’s organ donation plan. To critics, such a policy represents exploitation of the economically disadvantaged rather than charity for the poor. However, in China’s social and cultural ethics, we can find some traditional moral values that support the aid policy. For example, traditional Chinese culture advocates the idea that “the grace of dripping water should be reciprocated by a gushing spring” (滴水之恩，当涌泉相报). This means that recipients should offer some benefit directly to the donors rather than indirectly to society, and it does not deny the legitimacy of money as a way of doing this. For example, a classical Confucian book, The Annals of Lü Buwei (lvshichunqiu, 吕氏春秋), relates a story about Confucius and his disciples Zigong and Zilu, containing Confucius’ teaching about how to inspire good deeds in society. This story and Confucius’ teaching are worthy of our serious consideration: According to the laws of Lu, if a native of Lu was forced to be a servant or concubine to another feudal lord and could be purchased out of bondage, the purchase price would be recompensed from the Lu state treasury. The disciple Zigong purchased a Lu native from a feudal lord, but when he returned from his mission, Zigong refused the payment of recompense from the treasury. Confucius said, “Ci made an error in doing this. Henceforth people of Lu will never again purchase others out of bondage. Obtaining money for such a purpose

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J. Tang et al. does not damage moral conduct, but if the cost is not recompensed, no one will ever again purchase and make them free from others.” Zilu rescued someone who was drowning, and the man rewarded him with an ox, which he accepted. Confucius said, “People of Lu will certainly come to the aid of the drowning.” Confucius realized what the end result would be from the very beginning because his ability to perceive future developments was far-­ reaching (Riegel & Knoblock, 2000, p. 394).

In this story, Confucius criticized his student Zigong, who refused financial rewards for doing good deeds, and praised Zilu, who accepted the rewards for saving others. By urging that those performing good acts should accept the benefits offered by the state, we can see that Confucius was focused on how to encourage more people to perform morally good deeds. He did not encourage people to maintain some form of excessively high moral values, unwilling to accept any benefit in such circumstances. He held that benefit could serve as the means, while righteousness itself was the end. According to another Chinese history book, when another Confucian master, Mencius, studied with Zisi, Confucius’ grandson, Mencius found that Zisi also held a similar position by following Confucius’s view: When Mencius studied under the guidance of Zisi, he asked Zisi about what came first in the way of governing the people. Zisi replied: “Benefit them first.” Mencius said: “When a virtuous governor educates people, all he needs to do is to practice benevolence (ren) and righteousness (yi), so why is benefit necessary?” Zisi said, “Benevolence and righteousness are in favor of benefiting. If the governor is not benevolent, the governed will not be treated properly; if the governor is not righteous, the governed will be deceitful. These circumstances are enormously unbeneficial. So, the I-Ching writes: ‘Benefit is the harmonized circumstance of righteousness. Benefit can be used to comfort people and honor virtue.’ This is the great significance of benefit.” (Sima, 2014, p. 70).1

It is sometimes understood that Confucianism only advocates following the virtues of ren (benevolence) and yi (righteousness), overlooking the function of benefit or interest in human lives. The above passage shows that this is not the case. When Mencius asked Zisi about how to teach people to do good deeds, Zisi replied that the first step in teaching people to do good deeds was not to talk about “benevolence” and “righteousness,” but to act to benefit people first. According to Confucianism, exemplary (virtuous) individuals are distinguished from ordinary people, and they have different moral responsibilities. Even if the virtuous do not care about benefit to themselves, ordinary people do, and the former must bring about benefit to the latter in order to practice their virtue. In addition, benefit and righteousness can be harmonized—for ordinary people, accepting benefits does not mean giving up morality. In the view of Confucianism, organ donation is a righteous behavior. Since diversified values exist in modern society, we should not require everyone to be an exemplary person and be purely altruistic. The proper use of benefit as a means is to encourage more people to imitate righteous acts and thereby to gradually form a positive social climate for donation. If we neglect the social, economic, and cultural

 This translation is our own. We thank Prof. Ruiping Fan for helping us polish the translation.

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backgrounds of a society and adopt uniform standards to promote morality, it may more likely lead to moral depravity rather than moral purity. This research team believes that compensationalist incentives should not be used instead of or in preference to the necessary development of healthcare systems and essential organizational and systematic reforms. For example, costs for organ transplant surgeries ought to be covered by public healthcare insurance. On the other hand, we do not think it right to totally deny the reasonableness and legitimacy of offering hardship allowances to donors’ families in economic difficulty at the present time. When a family decides to donate a deceased member’s organs to others to save their lives, it is done at a time of huge sorrow having just lost a loved one. The deceased may also have been the family’s main breadwinner, making it even more difficult for the impoverished family to recover from such an event. In the Confucian understanding of reciprocity, as we outlined above, both the donor and the donor’s family have conferred a great benefit on the recipient and their family, and it is therefore necessary for that recipient and their family to reciprocate in order to show their sense of gratitude. In this sense, financial compensation is not only the most effective form of assistance but is also defensible. Some may think non-financial forms of aid for a donor’s family experiencing hardship would be better, though it is not the main mode of current incentives. Such non-financial aid includes assigning the family a permanent residence in a city of their choice or giving educational preferences to a child or children in that family. However, although such non-financial incentives are not directly expressed in the form of monetary rewards, there is clearly a potential economic value involved, so it is difficult to evaluate them. Due to population mobility, a donor’s location is often not where their core family members live. If an individual from a poor family living in an underdeveloped area is hospitalized in a developed city with a severe accidental brain injury, and happens to meet the conditions to become a potential organ donor, and if this city implements policies of helping a donor’s family find employment and for the children to be schooled in the city, such seemingly non-­ financial incentives might influence a family even more strongly than purely financial rewards would. If we are concerned in general about the possible abuse of any incentives (such as a family deciding to donate knowing it is against the deceased’s wishes), such non-financial incentives carry the same risk. A difficult task facing society is to respect the legitimate moral sense of reciprocity and at the same time prevent the possibility of families consenting to organ donation against the wishes of the patient. More and better family communication needs to be encouraged. It would also be helpful to develop better healthcare systems for the people and to reform structures and organizations to make them serve the people fairly and usefully. However, we do not think it is right to abolish every sort of compensationalist incentives. If a form of compensation can help show our respect and gratitude to the donor and their family, and at the same time relieve their hardship to some degree, that is well worth considering and supporting, as long as it is not abused to induce donation against the patient’s wishes.

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4.1.3 On the Familist Incentives The research team has found that familist incentives are generally supported by our interviewees but are not widely recognized by the public. This type of incentive is affirmed in the Basic Principles and Core Policies for Human Organ Allocation and Sharing in China: the immediate family members of cadaveric organ donors or living organ donors will be given reasonable priority when they need a liver or kidney transplant (National Health Commission of the PRC “People’s Republic of China (PRC)”, 2018). Our interviewees offered a wide and thought-provoking range of considerations to aid our further deliberations on this type of incentive. We think such familist incentives are ethically justified in the Chinese cultural context. In Chinese families, one’s health is not only a matter for the individual but also for the whole family. Furthermore, family decision-making should not only respect the patient’s autonomy, but also respect family members’ right to join the decision-making process to make shared decisions for family harmony and development. In the familist model, the autonomy of the patient is not reflected in the patient alone, but in the whole family, which includes the patient. The family represents the best interests of the patient, not an invasion of the patient’s interests. In this sense, family autonomy expands personal autonomy, it does not infringe upon it. It has been argued that familist incentives indicate the active maintenance of the Chinese traditional family culture (Fan & Wang, 2019). The general support of the familist incentive policy by our interviewees may confirm that Chinese society still attaches great importance to family relations in the ethical sense, and the setting of such a priority accords with the Confucian ethical tradition and manifests a general moral sentiment among Chinese people of cherishing the family as a part of their ethical lives (Fan, 2015). It is still generally held that the overall interests of the family and personal interests are not contradictory, and the family is in a good position to promote personal interests. Accordingly, from this perspective, it is not difficult to understand that the familist incentives are supported by our interviewees as ethically appropriate, and this support is in line with the general cultural assumptions of society regarding the standing of the family and the propriety of affording preferential treatment to family members. However, the effect of familist incentives is limited in practice. As we reported in Chap. 3, from the perspective of some interviewees, family incentives cannot really work, just as the Chinese incentive policy that gives priority to blood donors for blood transfusions does not work in reality. One reason for such failure is obvious: everyone knows that the probability of such a priority being exercised is very low because immediate family members may never need it, so the incentive is more symbolic than practical. Accordingly, this type of incentive lacks real motivating effect. Moreover, through our research (including all our interviews in the two big cities), we have not obtained any evidence of a positive correlation between the provision of family priority on the transplant list and increasing organ donation registration, nor have any of our interviewees experienced a case of family priority being applied. Even staff working for Organ Procurement Organizations (OPOs)

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expressed unfamiliarity with this priority right, though cases do of course exist where family priority has enabled family members to get the chance of an organ transplant when they needed it. Although interviewees have generally expressed support for the idea of such a family priority, they feel it lacks value in practice. “It’s just a statement,” says Z, a long-time registered donor who has been promoting organ donation. Another professional who reviews the ethics of organ transplants in hospitals regards it as a “hidden benefit” rather than an actual one. Of course, the number of interviewees in our research was very limited, and this should be borne in mind when considering this finding. There are difficulties in the implementation of familist incentives. An effective and ethical incentive policy should be made known to the public, and should clearly inform the target groups. However, some areas with a high number of organ transplants, such as Beijing, do not publicize this policy broadly. As we reported in Chap. 3, a health official in charge of organ transplant policy explained the reason: the incentive is fair and reasonable. However, if there is too much publicity, it will make patients and their families suspicious of the incentive. Therefore, it is not appropriate to formulate such an incentive policy in areas with a large number of transplants. Since organ transplants are highly expensive and are not covered by public health insurance, low-income families will be unable to pay the expenses even if they have a priority right to obtain an organ. Therefore, they may come to believe that the practical effect of such a priority policy is to benefit the affluent and harm the poor. Accordingly, some interviewees believe that the incentive does not directly address the core issue of organ donation in China, that is, economic factors. As a transplant coordinator comments, “It is difficult for many people to understand and accept that while organ donation is free, organ transplant recipients have to pay high medical fees.” Therefore, if a family enjoys such a priority because of a relative’s donation, once a family member needs an organ transplant in the future, and they are unable to pay and therefore fail to receive the transplant, we can imagine that this will cause even more profound anguish for the family, and even lead to a sense of disillusionment with social justice. One reason for this view is the general historical impression among the public of the highly specialized organ distribution system and the lack of openness regarding data at the social level, as well as some misunderstandings about the current cost of organ donation and transplantation. Many people waiting for transplants think that the high cost of organ transplant is caused by the scarcity of organs. However, the bulk of the cost actually comes from other sources, related to the medical, technical, maintenance, and human resource requirements involved in carrying out an organ transplant. Therefore, according to this view, if we only focus on the design of family priority but ignore the ability of the family to realize that right, it will result in adverse consequences. As an incentive measure for organ donation, family priority contributes to maintaining the independence and integrity of the family. It also has a rationality in Chinese culture, but there are still difficulties in the popularization of such a model. From our literature review we found two similar cases where family priority was applied. There is a person in a family waiting for an organ transplant. One family

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member dies of a cerebral hemorrhage caused by a car accident and the family decides to donate his organs. As this bestows a priority right on the family as a whole, the individual who is currently on the waiting list can use this priority to move to the top of the list and receive a transplant (Wang & Fan, 2017). This kind of situation is probably the most straightforward way to apply priority, and it is a desirable outcome for many people. The death of one family member increases another member’s chance of survival, but it may also have a negative impact on family integrity. The original intention of family priority was to encourage organ donation, and the individual may legitimately make a donation decision taking the overall interests of the family into consideration as long as the decision is freely made. However, such a donation should not be made by the family if the deceased individual has explicitly opposed donation. Accordingly, in implementing the familist incentives, it is important that the overall interests of the family not be maximized at the expense of an individual’s wishes. To draw all these points together, a familist incentive policy is reasonable and supported by traditional Chinese Confucian ethics, which are still influential in Chinese society. Unfortunately, our interview found that, in reality, the priority given to family members is only vaguely understood and does not inspire confidence. In practice, familist incentives still have a lot of room for improvement. Such reforms need to be implemented along with other institutional or structural reforms, such as the healthcare insurance systems. Perhaps the most productive reform regarding familist incentives would be to implement a public participation strategy around the integrity of the family: this involves encouraging internal family discussion to make sure that family members know each other’s true wishes regarding donation, as well as a public mechanism to prevent the possibility, no matter how small, that the family decides to donate against an individual’s wishes. Meanwhile, taking account of China’s cultural traditions, especially the significance of cherishing the integrity of the family, we should avoid marginalization of the family rather than blindly keeping pace with the West (Chen, 2013; Iltis et al., 2018).

4.2 Further Comments on Future Organ Donation Policy Reform in China 4.2.1 On the Context of the Reform In order to cope with the problem of organ shortage and to protect individual rights, systematic policies regarding organ donation have recently been rapidly established in China, including OPOs, a donation registration system, organ donation coordinators, and other related systems (Huang et al., 2012). The current donation reform recognizes the important decision-making position of families in regard to donation after an individual’s death, explores the idea of affording priority to the families of donors as an incentive scheme, and systematically promotes the relief system for

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families with difficulties (Wu & Fang, 2013). At the same time, good incentive measures should not only be out of good will, but also be supported by a sound institutional environment, so as to form an integrated and mutually supportive system. In order to ensure benign development for the future and avoid the abuse of incentives, a systematic improvement plan must be introduced as soon as possible during the rapid development period of China’s organ donation reform, so as to effectively promote the number of donations, learning from international experience and ethics while simultaneously taking particular Chinese social, cultural and ethics into consideration. As an interviewee who is familiar with organ donation policy making pointed out: “In the reform of China’s organ donation policy, the experience of Spain and Israel has been used for reference.” In 2019, Spain stood first in the world in terms of the number of donations and the donation rate per million population (International Registry In Organ Donation and Transplantation, 2021). In the Spanish model, the key to success depends not only on their presumed consent legislation, but also on well-developed ICUs, coordinators, and social welfare system (Matesanz et  al., 2017; Rodríguez-Arias et al., 2010). In the Israeli model, traditional values provide both supports and challenges, similar to the case of China. The Israel government introduced familist incentives such as transplant priorities for registered donors and close relatives (Cronin, 2014). With the new law (Lavee et  al., 2010) and public education campaign about organ donation (Wright & Silva, 2010), Israeli’s organ donation registration rates and the number of transplants carried out has increased significantly (Zaltzman, 2018). However, for China, the world’s largest developing country, there is no ready-made reference system in the field of organ transplantation. The country carried out local reforms to accumulate more experience. As a senior OPO staff member concluded in their interview, “Organ donors tend to come from economically backward provinces, and people from economically developed cities tend to secure organ transplants more easily. Organ donation is not a simple medical issue but a comprehensive issue.” In the current context, economic and medical resources are concentrated in the economically developed big cities, and this point must be taken into close consideration. Incentives for organ donation can only be proposed and implemented taking their particular economic and cultural situations into account, and their appropriateness and effectiveness have to be evaluated in relation to those situations.

4.2.2 Recommendations In order to make more comprehensive recommendations, the research group encouraged all the interviewees to express their views on “how to improve organ donation.” These suggestions can be summed up under four headings: promote social education, improve legislation, improve institutional design, and promote scientific and technological innovation.

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In terms of social education, several interviewees pointed out that traditional views such as “burial brings peace to the deceased” and “keep the body of the deceased intact” hinder organ donation, and long-term social education will be required to change the public’s point of view. Second, regarding legislative issues, two interviewees familiar with policy formulation pointed out the limitations of current organ donation policies: their content is too broad and lacks definitions of the rights and obligations of various stakeholders, especially donors. Moreover, the procedures are not rigorous, lacking extensive research and public discussion, which makes people question the nature and credibility of policy-making. Third, regarding institutional design, a person in charge of an OPO suggested: “The OPO organization would be better located in the civil affairs system, not in the hospital system. The medical institutions only provide professional advice and social workers should be introduced to participate in organ donation.” However, another senior OPO member pointed out: “In fact, it is very difficult for an OPO to function without the assistance of hospitals. The OPO has to carry out organ maintenance, which needs the functional support of hospitals.” Rationalization of the OPO system is the key to improving organ donation. Finally, in terms of science and technology, one interviewee put forward this opinion: “The way to solve the shortage of organs does not lie in organ donation, but in the promotion of scientific and technological innovation. For example, the growing of organs from stem cells is being studied.” In addition to policy reform, some believe that technological innovation may eventually help resolve ethical problems. A classic problem in ethics is bridging the gap between “what the reality is” and “what it should be.” As medical ethics scholars, we summarized various viewpoints collected in Chap. 3, analyzed and weighed these viewpoints in the current chapter, and now offer some ethically appropriate recommendations which we hope will deepen academic discussion and public dialogue on organ donation policy reform, thus helping to accelerate the establishment of an efficient and fair organ donation system on the Chinese mainland. 1. Transform the honorary incentive from an individual to a socio-cultural level. An effective honorary incentive should involve recognition by society as a whole of the honor associated with organ donation, and not just aim at enabling the donor family to feel this sense of honor. Positive factors conducive to organ donation in Chinese traditional culture, especially family ethical resources, should be explored. Social education on issues of death should be promoted and social awareness of organ donation improved. 2. Enhance the fairness and transparency of the organ distribution process and increase public confidence in organ donation. National donation management agencies and local OPOs should disclose relevant information on their websites, ensure that the data are true and accessible, respond to general queries, and accept public supervision. 3. Support donors’ families. Create a supportive and shared donation decision-­ making process and provide the family with grief counseling and continuous social care after a donation. Promote the connection between the family and

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society, and develop skills for registered donors to enable them to discuss their decision with family members and get recognition and support from their families for their decision to donate. 4. Coordinate various organ donation laws and regulations. Currently, there are various policies and they are promulgated frequently, and the central government must coordinate and unify them. In the future, a unified national law on the donation of human organs (including tissues and cells) should be introduced. When local governments and Red Cross Societies develop and implement regional incentive policies, they should consider fairness among regions, and strive to eliminate unfair disparities between different regions. Competition between regions for organ resources should be avoided. 5. Improve the relevant donation systems. Medical institutions, OPOs, ICU medical staff, and coordinators should receive continuous training on ethics. From a long-term perspective, OPOs and coordinators should be further socialized and professionalized, and donation and transplantation should be separated at the institutional level. An actuarial cost method is needed to calculate the various expenses involved in organ donation and transplantation, thus promoting the establishment of an appropriate socialized medical insurance system for transplantation. The Chinese transplant medical community should take the lead in practicing professionalism (including such principles as patient-interests first, and respect for autonomy and social justice), emphasizing industry self-­ discipline, adhering to the established reform regulations, especially those regarding COTSF (The China Organ Transplantation Response System中国人 体器官分配与共享计算机系统, www.cot.org.cn), and actively participating in the promotion of organ donation social awareness.

References Capron, A. M., & Sun, T. (2017). Ethical principles and practical applications in cadaveric organ donation [in Chinese]. Chinese Medical Ethics, 3, 398–399. Capron, A.  M., Delmonico, F.  L., Dominguez-Gil, B., Martin, D.  E., Danovitch, G.  M., & Chapman, J. (2016). Statement of the declaration of Istanbul custodian group regarding payments to families of deceased organ donors. Transplantation, 100(9), 2006–2009. https://doi. org/10.1097/TP.0000000000001198 CHA. (2017). Organ procurement and distribution management working Committee of Chinese Hospital Association. Trial measures for cost accounting and fund management of human organ procurement and transplantation [in Chinese]. Journal of Wuhan University (Medical Edition), 6, 112–114. Chen, L. (2013). Confucian body consciousness and contemporary organ donation ethics [in Chinese]. Chinese Literature and History, 1, 61–68. Cronin, A.  J. (2014). Points mean prizes: Priority points, preferential status and directed organ donation in Israel. Israel Journal of Health Policy Research, 3(1), 1–4. https://doi.org/10.118 6/2045-­4015-­3-­8 Danovitch, G. M., Capron, A. M., & Delmonico, F. L. (2021). The true meaning of financial neutrality in organ donation. American Journal of Kidney Diseases, 77(6), 967–968. https://doi. org/10.1053/j.ajkd.2020.11.006

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Fan, R. (Ed.). (2015). Family-oriented informed consent: East Asian and American perspectives. Springer. Fan, R., & Wang, M. (2019). Family-based consent and motivation for cadaveric organ donation in China: An ethical exploration. Journal of Medicine and Philosophy, 44(5), 534–553. https:// doi.org/10.1093/jmp/jhz022 Huang, J., Millis, J. M., Mao, Y., Millis, M. A., Sang, X., & Zhong, S. (2012). A pilot programme of organ donation after cardiac death in China. The Lancet (British Edition), 379(9818), 862–865. https://doi.org/10.1016/S0140-­6736(11)61086-­6 Huang, J., Millis, J. M., Mao, Y., Millis, M. A., Sang, X., & Zhong, S. (2015). Voluntary organ donation system adapted to Chinese cultural values and social reality. Liver Transplantation, 21(4), 419–422. https://doi.org/10.1002/lt.24069 Iltis, A. S., Wang, Y., Gao, W., Wang, X., Ma, R., & Fan, R. (2018). Organ donation in China: Based on domestic, not copying the west [in Chinese]. Chinese Medical Ethics, 31(2), 137–150. International Registry in Organ Donation and Transplantation. (2021). Database of Spain. Retrieved February 15, 2022, from https://www.irodat.org/?p=database&c=ES#data Lavee, J., Ashkenazi, T., Gurman, G., & Steinberg, D. (2010). A new law for allocation of donor organs in Israel. The Lancet (British Edition), 375(9720), 1131–1133. https://doi.org/10.1016/ S0140-­6736(09)61795-­5 Lou, A., Xie, W., Wei, W., Wan, Q., & Deng, X. (2016). Public opinion on organ donation after death and its influence on attitudes toward organ donation. Annals of Transplantation, 21, 516–524. https://doi.org/10.12659/aot.899268 Martin, D. E., Van Assche, K., Domínguez-Gil, B., López-Fraga, M., Gallont, R. G., Muller, E., et al. (2019). A new edition of the declaration of Istanbul: Updated guidance to combat organ trafficking and transplant tourism worldwide. Kidney International, 95(4), 757–759. https:// doi.org/10.1016/j.kint.2019.01.006 Matesanz, R., Domínguez-Gil, B., Coll, E., Mahíllo, B., & Marazuela, R. (2017). How Spain reached 40 deceased organ donors per million population. American Journal of Transplantation, 17(6), 1447–1454. https://doi.org/10.1111/ajt.14104 National Health Commission of the PRC. (2018). Basic principles and Core policies for human organ allocation and sharing in China [in Chinese]. Retrieved May 26, 2022, from http://www. nhc.gov.cn/yzygj/s3586/201808/e500298b06d744f39f29421f6cd91761.shtml. National Health Commission of the PRC. (2021). Measures for the charges and Financial Management of the Acquisition of human donated organs [in Chinese].. Retrieved May 26, 2022, from https://zwfw.nhc.gov.cn/kzx/zcfg/yljgrtqgyzzyzgddsp_240/202107/ t20210723_2157.html. Ravitsky, V. (2013). Incentives for postmortem organ donation: Ethical and cultural considerations. Journal of Medical Ethics, 39(6), 380–381. https://doi.org/10.1136/medethics-­2013-­101322 Riegel, J., & Knoblock, J. (2000). The annals of LüBuwei. Stanford University Press. Rodríguez-Arias, D., Wright, L., & Paredes, D. (2010). Success factors and ethical challenges of the Spanish model of organ donation. The Lancet (British Edition), 376(9746), 1109–1112. https://doi.org/10.1016/S0140-­6736(10)61342-­6 Sima, G. (2014). In Zhao X. (Ed.), Comprehensive mirror for aid in government [in Chinese]. Annotated by Wu Yin. Chongwen Burea. Wang, M., & Fan, R. (2017). Organ donation and distribution: Defending the family first principle in China [in Chinese]. Chinese Medical Ethics, 30(10), 1187–1191. Wright, L., & Silva, D. S. (2010). Incentives for organ donation: Israel’s novel approach. The Lancet (British Edition), 375(9722), 1233–1234. https://doi.org/10.1016/S0140-­6736(09)61520-­8 Wu, X., & Fang, Q. (2013). Financial compensation for deceased organ donation in China. Journal of Medical Ethics, 39(6), 378–379. https://doi.org/10.1136/medethics-­2012-­101037 Zaltzman, J. (2018). Ten years of Israel’s organ transplant law: Is it on the right. Track? Israel Journal of Health Policy Research, 7(1), 1–3. https://doi.org/10.1186/s13584-­018-­0232-­1

Part III

Chicago Papers

Chapter 5

The Concepts and Development of Organ Donation Policy in the United States Wan-Zi Lu and J. Michael Millis

5.1 Introduction In the United States, the number of organ donations has increased and transplant outcomes have consistently improved since the first kidney transplant in 1954. As this chapter illustrates, this progress was made possible not only because of medical innovations but also as a result of legal and institutional support. The chapter first presents the empirical data in relation to the growth of donation rates to contextualize relevant developments before introducing the key legal apparatus, the National Organ Transplant Act (NOTA). With NOTA in place, any form of compensationalist incentive is forbidden, nor are there any familist incentives. The honorary incentives are implemented by the Organ Procurement and Transplant Network (OPTN), which leads the organ procurement organizations (OPOs) in encouraging donations and campaigning for public awareness of altruistic giving. The last section situates developments in Chicago in this context and outlines the role of the regional OPO, Gift of Hope Organ & Tissue Donor Network (Gift of Hope).

W.-Z. Lu Polonsky Academy for Advanced Study in the Humanities and Social Sciences, Van Leer Jerusalem Institute, Jerusalem, Israel e-mail: [email protected] J. M. Millis (*) University of Chicago, Chicago, IL, USA e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 R. Fan (ed.), Incentives and Disincentives in Organ Donation, Philosophy and Medicine 133, https://doi.org/10.1007/978-3-031-29239-2_5

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5.2 Organ Donation Rates in the United States and Chicago The United States has had one of the highest donation rates in the world. The preliminary 2020 data from the International Registry on Organ Donation and Transplantation (IRODaT) ranks the United States highest in the world for the rate of deceased donation (38 per million population) and rates of kidney and liver transplantation at 55.6 and 25.4 per million population from deceased donors, respectively (IRODaT, International Registry in Organ Donation and Transplantation, 2022). The recent high donation rates are the result of a steady increase over the decades. From 2004 to 2015, for instance, donations and donation rates of different organs have grown, as shown in Figs. 5.1, 5.2, and 5.3. In 2020 to 2021, the major causes of death among brain-dead deceased donors were: anoxia (47.6%), stroke (24.9%), head trauma (24.5%), central nervous system tumors (0.2%), and other (2.8%). An additional 27.8% of donations came as a result of circulatory death (SRTR, Scientific Registry of Transplant Recipients, 2022, p. 19).

Fig. 5.1  Kidney donations in the United States. (Data source: Lentine et al. (2022))

Fig. 5.2  Kidney and liver donation rates in the United States. (Data source: Israni (2022))

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Fig. 5.3  Donation rates of solid organs other than isolated kidney or liver in the United States. (Data source: Israni (2022)) 8,000 Deaths on the kidney transplant waiting list Patients removed from the kidney transplant waiting list classified as ‘too sick’ or ‘other’ reasons

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Fig. 5.4  Deaths on the kidney transplant waiting list. (Data source: Poggio et al. (2016))

In spite of the steady rise in donation rates, the waiting lists for donations remain long and thousands of patients die every year while waiting for transplants. For the highest in-demand organ, the kidney, there were 30 patients on the list per 100,000 population as of September 2020. Fig. 5.4 shows the number of deaths on the kidney transplant waiting list and Figs.  5.5 and 5.6 display the trends for transplant candidates for solid organs from 2008 to 2020.

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Fig. 5.5  Candidates on kidney and liver transplant waiting lists. (Data source: Israni (2022))

Fig. 5.6  Candidates on transplant waiting lists for solid organs other than isolated kidney or Liver. (Data source: Israni (2022))

5.3 Policy and Legislation Regarding Transplantation 5.3.1 Justification and Goals The goal of enacting policy is to establish operating norms that are appropriate to the complex ethical issues associated with transplantation. The reason transplantation is more dependent on policy than other aspects of medicine and surgery is that transplantation always must consider the rights and desires of a third critical party— the donor. Since 1954, with the advent of successful transplantation, organ donation provides one more tool by which medicine can pursue the service of human life. Thus,

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transplantation depends upon the predetermined, self-sacrifice of ordinary citizens to become donors, a unique situation that makes both doctors and citizens joint participants in medicine’s service of human life. The transplant system must therefore protect the rights of the donor as much as, if not more than, the recipient. Whether the donor is a living or a cadaveric donor, the donor and donor’s family have rights that cannot be ignored, trivialized, or marginalized. If the donor is a living donor, in addition to the immediate potential complications, the transplant community has accepted a level of responsibility for that donor for many years. Currently, policy is not uniform throughout the world, although there is significant movement to align transplant policy with uniformly accepted ethical standards that are recognized globally.

5.3.2 History of Regulation in the US It is important to understand the history of the regulation of the transplant industry in the US so that the continuing efforts to improve transplantation in the US and around the world can be placed in context. The first federal regulation directly impacting transplantation was NOTA (National Organ Transplant Act of, 1984). This act, passed by Congress in 1984, initiated the journey of addressing the organ donor shortage and improving the organ matching and placement process. NOTA required the establishment of an Organ Procurement and Transplantation Network (OPTN) that would be operated by a private non-profit organization to maintain a national registry for organ matching. This contract is periodically renewed and thus far the United Network for Organ Sharing (UNOS) has been successful in maintaining the OPTN contract. As transplantation services have expanded both in scope and expense, payors have become an important regulatory agent; specifically, the Centers for Medicare and Medicaid (CMS) have established transplant-specific regulations. All of these regulatory bodies carry out announced and unannounced audits of transplant programs.

5.3.3 National Organ Transplant Act of 1984 NOTA was a necessary step for two reasons: (1) As organ transplantation became increasingly successful, the indications for transplantation expanded from end-stage renal disease to those suffering from end-stage liver and heart disease, thus increasing the need for organs and transplant activity, and (2) The development of plans to initiate a market for organs. In September 1983, H.  Barry Jacobs, M.D., whose medical license had been revoked for a 1977 mail fraud conviction, established a Virginia company to broker human living donor kidneys. The recipient would pay the donor and Jacobs planned to receive between US$ 2000 and US$ 5000 for his brokerage services. This plan was legal when Jacobs announced it, but within

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6 months Virginia passed legislation banning the sale of human organs and the US Congress passed NOTA approximately 1  year after the plan was announced (Denise, 1985). The National Organ Transplant Act (NOTA) was passed by Congress and signed into law in 1984 (NOTA, 1984) and it was amended in 1988 and 1990. NOTA has three primary provisions regarding solid organ transplantation: 1. Establishment of a task force on organ procurement and transplantation; 2. Establishment of both an Organ Procurement and Transplantation Network (OPTN) and Organ Procurement Organizations (OPOs) in the 1988 amendment, and a scientific federal registry of all organ transplant recipients in the 1990 amendment. The scientific registry of transplant recipients (SRTR) is separate from the allocation policy and OPTN membership component of regulation. The SRTR performs statistical analysis to support the OPTN and reports publicly on outcomes of and advances in transplantation related to organ allocation and results. The SRTR publishes extensive information regarding national and center-­specific transplant data at http://www.srtr.org. These reports are updated every 6 months and must be provided to patients at the time of listing as well as around the time of transplant. 3. Prohibition of Organ Purchases.

5.4 Systems and Structures of Organ Transplantation 5.4.1 Organ Procurement and Transplantation Network (OPTN) 5.4.1.1 Criteria Membership of the OPTN is detailed in NOTA: 1. All organ procurement organizations, 2. Transplant hospitals participating in the Medicare and Medicaid programs, and 3. Other organizations, institutions, and individuals that have an interest in the fields of organ donation or transplantation. The Board of Directors and all of the committees have transplant surgeons or transplant physicians as approximately 50% of their membership, with a minimum of another 25% drawn from transplant candidates, recipients, organ donors, and family members. The balance of each committee and Board are made up of OPO representatives, transplant hospital representatives, transplant coordinators, non-physician transplant professionals, and the general public (NOTA, 1984).

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5.4.1.2 Function The function of the OPTN is to develop national policies regarding organ donation and allocation, maintain a national list of transplant candidates, and a national system for matching donors with recipients 24/7/365. In 1989, the OPTN was notified that it could not enforce policy until federal regulations were published. These federal regulations were published in 2000—“the OPTN Final Rule” (Department of Health and Human Services, 2000). The Final Rule provides overarching policy goals and charges the OPTN with developing policies and enforcing those policies. To receive organ offers, a transplant program must be located in a transplant center approved by the OPTN, a Medicare-approved transplant program, or a Veterans Affairs, Department of Defense, or other federal hospital. The OPTN has defined criteria in order for a program to be designated a transplant center. 5.4.1.3 The Final Rule Guiding Principles The OPTN is responsible for developing policies that allocate deceased donor organs equitably. The allocation policies must have performance goals that include objective and measurable waiting list criteria, rank patients in decreasing order of medical urgency, distribute organs over as large an area as feasible, and reduce variation among transplant programs in regard to waiting time, transplant rates, and post-transplant outcomes. The OPTN is also responsible for the following: requiring donor testing to prevent spread of disease; reducing socio-economic inequities in access to transplants; stipulating the physician and surgeon requirements for programs designated to receive offers of organ; ensuring that allocation policies are organ specific and based on sound medical judgment and the best utilization of organs; allowing programs to refuse organs; avoiding organ wastage and futile transplants; promoting patient access to transplantation; and ensuring efficient organ placement and that policies are not based on a patient’s geographic location except as necessary to achieve optimal use, fair access, efficient placement, and to avoid organ wastage. Transplant center quality is assessed through a peer review process. This peer review process assesses hospital applications for OPTN membership (eligible to receive organs for transplant), and member compliance with OPTN policies. A member found not to be in compliance with policies can be subject to any of the following measures: loss of status to receive organ offers (requires approval by the Secretary of the Department of Health and Human Services, DHHS), termination of Medicare participation for the hospital (also requires approval by the Secretary of the DHHS), and various other alternatives that do not require the Secretary’s approval, such as frequent on-site monitoring, active CMS and OPTN involvement in quality improvement, and letters of reprimand.

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5.4.2 Payors’ Role in Regulation of Transplantation All major payors for transplant services require extensive periodic reports from the transplant centers as well as querying all publicly available data regarding transplant centers. The payor that has taken the lead in establishing approval criteria is the Centers for Medicare and Medicaid (CMS). In 2007, CMS announced that all transplant programs were required to apply or reapply for continued participation (Millis et al., 2009). CMS conducts unannounced onsite audits of programs approximately every 3 years. Recently CMS has announced a program that significantly increases the quality assessment and performance improvement (QAPI) program (Department of Health and Human Services, 2000). This new program emphasizes CMS’s expectations regarding a comprehensive transplant QAPI program. The expectations for a robust transplant center QAPI program include: a QAPI committee/council that has regular members and meetings; defined responsibilities; documentation of how QAPI improvements are tracked and of decisions regarding data collection and tracking; decision processes regarding indicators for monitoring QAPI; and objective measures relating to transplant processes and patient outcome. The program should also track and evaluate two meaningful measures in the following phases of transplant care: Pre-transplant, Transplant, and Post-transplant, and the transplant QAPI program should be tightly integrated with the hospital’s QAPI program. All these steps—NOTA, concern for both deceased donors and their families, concern for living donors, recipient outcomes, publicly available center-specific current data regarding transplant rates and survival, onsite audits by regulators and payors—provide the public with confidence in the ethical practice of transplantation. This confidence allows the public to support the system by altruistically providing organs as donations, asking nothing in return except that the system exercise its best efforts to provide new life for those that, without such a gift and system, would certainly die.

5.5 OPOs in Organ Donation: The Case of Gift of Hope in Chicago With legal and institutional support, OPOs have played a significant role in promoting and delivering an organ donation system based on honorary incentives in the United States. Across the country, 57 OPOs facilitate deceased organ donations— and the kidney is the most common and needed vital organ for donations and transplants. These OPOs are under the supervision of the Organ Procurement and Transplantation Network, a program within the Health Resources and Services Administration (HRSA) of the Federal government. The OPOs facilitate cross-OPO coordination to transfer organs for transplantation, review donation and transplant guidelines, and track the donation. The performance of OPOs and transplant centers

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are reviewed by the SRTR, also via a contract with the HRSA. Each OPO facilitates deceased organ donation activities across hospitals in its service area, primarily by designating coordinators to either work as in-residence coordinators on a daily basis or respond to occurrences of potential donors—in the latter time-sensitive scenarios, the coordinators contact OPOs to match potential recipients with potential donors on the waiting list, contact transplant teams in the hospitals, and communicate with potential donors’ families about proceeding with donation and transplantation. The study draws from developments in Chicago to understand the operation of American transplant and donation programs. Chicago is in the service area of Gift of Hope. Gift of Hope’s mission statement reads: “To save and enhance the lives of as many people as possible through organ and tissue donation” and its objective is, “to honor that gift and through that honoring … empower the families of the deceased.” Figures 5.7 and 5.8 shows Gift of Hope’s service area in the Midwest. Reports of donation rates suggest rates higher than the national average in the Chicago area (SRTR, 2022, p. 8) while deaths per 1000 population were not particularly high as compared to other major cities (Fig. 5.9). In the past decade, Gift of Hope has noticeably improved the rate of family consent from potential donors’ families—now reaching 75 percent—and thus shortened the waiting time to receive deceased donations. However, similar to the national trends across the United States, Chicago faces organ shortages. The average waiting time for kidney transplantation ranges from 5–7 years in the region, and Gift of Hope initiated campaigns to make the public aware of the shortage, understand the meaning of organ donations, and motivate residents to consider signing up as donors. For instance, Gift of Hope holds Walk for Kidneys in Illinois, where transplant teams, donors’ families, recipients, and the public celebrate the life-transforming results of kidney donations. In addition to annual fundraising events such as the Walk, media reports about successful kidney donations and transplantations also play crucial roles in building the public’s

Fig. 5.7  Service area of Gift of Hope and locations of transplant programs. (Data source: Scientific Registry of Transplant Recipients (2022))

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Fig. 5.8  Standardized donation rate ratio, July 2020 to June 2021 (Gift of Hope Service Area Marked in Blue). (Data source: Scientific Registry of Transplant Recipients (2022))

Fig. 5.9  Deaths per 1000 population (Gift of Hope Service Area Marked). (Data source: Scientific Registry of Transplant Recipients (2022))

knowledge of organ donations. The image of an honorable act of donation finds its roots in the publicizing of stories about lives saved and families reunited through the altruistic act of organ donation.

5.6 Conclusion This chapter introduces the historical trajectories leading to the current transplant law that promotes honorary incentives. The legal foundation further establishes national institutions to supervise the operation of the honorary system, primarily carried out through a network of OPOs. While donation rates have gradually improved and are the highest in the world, the demand for deceased donations remains acute. In the Chicago study site, Gift of Hope has served as the OPO that

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facilitates the work of promoting donation, connecting regional hospitals to identify potential donors, and facilitating organ procurement. Chap. 6 reports interviews conducted in Chicago to contextualize how transplant teams, donors and their families, and the public respond to the donation policy and institutional designs.

References Denise, S. H. (1985). Regulating the sale of human organs. Virginia Law Review, 71(6), 1015–1038. https://doi.org/10.2307/1072918 Department of Health and Human Services. (2000). Organ procurement and transplantation network. 42 CFR Section 121. Federal Register. https://www.govinfo.gov/app/details/ CFR-­2011-­title42-­vol1/CFR-­2011-­title42-­vol1-­part121/context International Registry in Organ Donation and Transplantation (IRODaT). (2022). Donations in 2020. International Registry in Organ Donation and Transplantation. https://www.irodat.org/ Israni, A.  K. (2022). OPTN/SRTR 2020 annual data report: Introduction. American Journal of Transplantation, 22(S2), 11–20. https://doi.org/10.1111/ajt.16974 Lentine, K., Smith, J., Hart, A., Miller, J., Skeans, M., Larkin, L., et al. (2022). OPTN/SRTR 2020 annual data report: Kidney. American Journal of Transplantation, 22(S2), 21–136. https://doi. org/10.1111/ajt.16974 Millis, J., Huang, J., Millis, A., Liu, Y., Mao, Y., & Simmerling, M. (2009). 2007: The year of regulatory change. Transplantation Proceedings, 41(1), 6–25. https://doi.org/10.1016/j. transproceed.2008.10.041 National Organ Transplant Act (NOTA). (1984). Organ Procurement and Transplantation Network. 42 CFR Chapter I Subchapter k part 121. Federal Register. https://www.govinfo.gov/content/ pkg/STATUTE-98/pdf/STATUTE-98-Pg2339.pdf Poggio, E., Buccini, L., Flechner, S., Goldfarb, D., & Schold, J. (2016). Significant increase in wait list removals for candidates considered too sick from the US kidney transplant waiting list. [abstract]. American Journal of Transplantation, 16(Suppl 3). https://onlinelibrary.wiley. com/doi/pdf/10.1111/ajt.13594 Scientific Registry of Transplant Recipients (SRTR). (2022). OPO-Specific Report: Gift of Hope Organ & Tissue Donor Network. Retrieved July 2, 2022, from https://www.srtr.org/reports/ opo-­specific-­reports/opo?code=ILIP

Chapter 6

Interviews in Chicago Wan-Zi Lu and J. Michael Millis

6.1 Introduction Based on coordination with other research teams, interviews were carried out to understand how people inside and outside the transplant field evaluate honorary, compensationalist, and familist incentives. Between June and September 2019, the authors conducted fifteen interviews in Chicago.1 These interviews were semi-­ structured and lasted between 45  minutes and 3  hours. All interviews were conducted in English and took place in the interviewees’ workplaces, hospitals, other public spaces, or through video calls. The fifteen interviewees included a policymaker in the transplant field, a social worker, a transplant coordinator, a recipient (unemployed) and her sister (employee of a state office), a living donor (journalist) and his wife (housewife), a nephrologist, an Organ Procurement Organization (OPO) requester, a donor family (family business), an ethicist, and four (two men and two women) residents who were not related to the transplant community. Of these four residents, one was a theology professor, one an activist for the homeless population in Chicago, one a scientist working in a large biotechnology lab, and the final one was a recent college graduate. Apart from the four residents, who came from different age groups and had different religious and educational backgrounds, the other interviewees’ were identified through a large transplant center in the city.  The study has been approved by the University of Chicago IRB 19–0045.

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W.-Z. Lu Polonsky Academy for Advanced Study in the Humanities and Social Sciences, Van Leer Jerusalem Institute, Jerusalem, Israel e-mail: [email protected] J. M. Millis (*) University of Chicago, Chicago, IL, USA e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 R. Fan (ed.), Incentives and Disincentives in Organ Donation, Philosophy and Medicine 133, https://doi.org/10.1007/978-3-031-29239-2_6

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Once the interviews were completed, the recordings were transcribed by two research assistants. The authors then used MAXQDA to code the transcripts to capture the interviewees’ general attitudes and to differentiate between details of the three incentives. While the respondents in general ranked honorary incentives as the first choice among the three models, they indicated that this preference might result from their familiarity with honorary incentives in America. In addition, the interviewees generally believed that to overcome the barriers and incentivize more donations requires approaches other than adopting monetary or familist incentives. To the respondents, some feasible ways of motivating organ donations include: modifying legal requirements for donor consent along with ongoing social change and technological innovations; communicating with the public to ensure the delivery of transparent and accurate information about organ donation; and engaging with donor families, religious groups, and people who have witnessed and experienced the honorable feelings associated with helping others through organ donations, thereby gaining the trust of the public. In the following, we first outline the interviewees’ general attitudes toward incentives for deceased donation. The first section includes the key concepts interviewees used to understand organ donation and how they drew from those concepts to choose between the three incentive models. After presenting how interviewees differentiated between honorary, compensationalist, and familist incentives, the chapter discusses the interviewees’ attitudes toward the three models in detail— what they saw as the pros and cons of each model. In the honorary incentives section, the study also draws from the interviews to illustrate how the system rolls out in Chicago.

6.2 General Attitudes Toward Three Incentives All the interviews related to cadaveric donation, and the majority of interviewees preferred the honorary system over the other forms of incentive. Many interviewees regarded the honorary system as integral to the notion that deceased donation is gift giving. For instance, the ethicist put it this way: I think [having the honorary system to incentivize deceased donation is] a very important part of current medicine. It’s an imperfect solution, but it’s a solution that saved countless lives since it’s been instituted. I think it’s important that we support it. It’s consistent with many religious traditions as well. Th[at] thousands of bodies can be [a] gift is really an extraordinary moral realization.

Other interviewees also emphasized that the fact that deceased donors are dead makes honorary incentives a suitable choice. A member of the donor family mentioned that she supports giving away body parts to save the lives of others because there is “nothing more valuable that can last after death.” And another interviewee (adult man) also elaborated that “the honorary system is an imperative” because “it stands for the religious value of saving lives, and the opportunity to improve the

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quality of life certainly outweighs any consideration of the deceased body. Obviously, it should be voluntary.” The only interviewees that suggested reevaluations of the honorary systems were a woman and the living donor, who both noted that the honorary incentives have not been successful in encouraging more eligible donors to donate, and the shortage of organs remains serious. In contrast to the general support for honorary incentives, there was some strong opposition to compensationalist incentives, exemplified by the ethicist’s argument: We should never introduce money and capitalism into the system. I think that would be a tragedy, in particular because of the history of oppression and racial exclusion in this country, there’s been the sense of we use the bodies instrumentally for so many things. This would be the final, the final moment of use and that would be repugnant to many families.

The nephrologist also added, “I’ve seen so many concerns about unintended consequences. So, someone was desperate to commit suicide so that their organs can be used. I mean, because there will not be a life insurance policy. You want [to] get people donating organs, but you don’t want [to] incentivize people killing themselves.” However, the donor family, coordinator, and the living donor also pointed out that they would consider incentives other than honorary ones if they motivated higher donation rates. Like other interviewees, the donor family pointed out that having experienced only the honorary incentives made her lean toward the current model, but “there are benefits of all systems.” For example, the living donor highlighted that if money can encourage more people to give, and thereby resolve the long-lasting organ shortage, it might be a model to consider. He proposed, “There is no universal fraud associated with money or financial incentives, so I think it’s worth it to save thousands and thousands of people from dying. Absolutely worth thinking [about]…”. The familist incentive also received mixed responses. Those who hesitated to fully support such incentives argued that the system challenges individual autonomy or appears too restricted. One adult man argued, “You donate just to follow your heart. You want to help others. You don’t want to donate because others around you want you to donate.” The policymaker also said, “In terms of limiting [incentives] to familial, I’m not sure I see there’s an advantage from a policy standpoint, because you limit the scope much further.” Meanwhile, there was some support from other interviewees. They pointed out that in a specific cultural context, this model may be suitable. An adult woman stated the following: Individual right matters and I am not religious, so for me there’s no spiritual relationship to my body. But for countries that have a strong religious identity, for families that have a strong religious identity, the body is sacred, and also the family ends up becoming sacred. Thus, these countries may take other incentives.

In sum, the interviews all showed support for deceased donation and the honorary system. As the OPO requester pointed out: “Donation is [a] personal decision. What I agree from the United States’ model is that it doesn’t fall under healthcare law. It falls under gift law.” That said, the interviewees were open to learning more about other models and if one model had been proven more effective than others. When

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interviewees compared the three models, they selected honorary incentives as the first choice, but some ranked the familist model as a second choice. As the recipient’s sister explains, merit is the most important consideration, but she was also willing to benefit the immediate family with her donation under the familist system. Meanwhile, all interviewees embraced the idea that deceased donation is gift-­ giving, and other models would make people “give something and expect something in return of [sic] a gift. That just doesn’t match up” (social worker). As the social worker mentioned, other models may have been proven effective elsewhere, but it would mean “a huge cultural shift” for a different system to be adopted in the United States.

6.3 Honorary Incentives The interviewees exemplified how honorary incentives made an impact on donor families and society, demonstrated that the system builds on daily efforts to make the public aware of organ donation, and illustrated the ways living donation serves as a positive reinforcement of organ donation as gift-giving. This report outlines the key findings in these three aspects. While the interviews described multiple ways that make honorary incentives work in Chicago, they also pointed out several challenges to enlarging the willing donor pool, especially how existing social cleavages pose barriers to strengthening trust in the medical practice of donation and transplantation.

6.3.1 How Honorary Incentives Work in Chicago Because deceased donations happen as a result of a variety of events, including accidents or strokes, the medical teams have to coordinate to ensure that potential donors get to be considered for transplants. In these urgent situations, the transplant coordinators would first check if the potential donors, having been pronounced brain dead, have opted in as willing donors. In most cases where donors have opted in, the requesters would “introduce the affidavit and say to the family: you don’t have to make a decision here. Your loved one’s already made this decision. I’m here to help you through that and to support you.” And the families would find it a great relief to be able to honor the willing gift. The donor family’s mother shared her experience as she went through the heart-­ wrenching process—after her young son was killed in an accident and pronounced brain dead, she and her husband were about to take their child home when the requester approached them: [It was then that we learned that] our son had actually done everything he needed to do to be a donor and we did not know that. So that was a gift to us, right? Because we were honoring his wishes then. But it was such, it was just you as a parent, you hope you’re making the

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right decision. But then when we found that out, he did it sometime around when he was at college. Then we said right away, I need to make the donation happen.

Though around sixty percent of people have signed up as willing donors in the United States, the donor families play a key role in offering consent to organ procurement when the eligible donors have not expressed their will. The interviews show that in these processes of obtaining family consent, honorary incentives can also determine whether the families agree with organ donation—but only after the families accept the death and have the mental space to consider organ donation. The transplant coordinator mentioned the importance of separating the emotional shocks after a loss and the consideration for organ donation—the later processes can happen “in minutes or over the course of several days.” The OPO requester recalled how she approached the families to initiate the process: I will take all the time it takes to make sure that the family has had an opportunity to really explore the concurrent pathways of decision making. So, what I tried to utilize myself and encourage my staff to utilize is this model of concurrent planning. Like “this is what your life could look like if you said ‘yes’ to donation; this is what your life could look like if you declined donation. Which pathway do you see being a healthy, sustainable pathway in the future? So, you know, taking yourself out of the grief of this moment and trying to think about where you might be six months from now or a year from now, how donation plays a part in that for you?” And those are not easy, fast conversations. Those are exploratory conversations that can go on sometimes for hours.

As the families process the emotional turmoil and distress, the honor of becoming an organ donor contributes to motivating the families to consent to donations. The social worker gave an example: in Chicago, there are many gunshot victims. The grief that the families of these victims have to go through is so intense that donation becomes an opportunity to think about the legacy of their loved ones. These victims die young and suddenly, and their families would think of organ donation as an important act for how the deceased will be remembered. “This is one good act that he or she is able to perform after death”—this thought helped them to agree to the donation when the deceased had not expressed their willingness or were too young to do so. One way to honor the gift is by giving medals and thank-you certificates to deceased donors and those who support the donation. According to the transplant coordinator, These honorary medals and certificates are so important. I’ve seen families from very modest means and very impoverished means who can’t afford a headstone. That medal becomes their headstone. I’ve seen families actually take it to the funeral home and have it embedded in the headstone. It’s so fundamentally important to them…as an honorarium to acknowledge that you’re a hero.

During the grief and bereavement ritual, the transplant coordinator further noted, the medals are visual symbols that reaffirm to the families of the deceased that their loved ones are not forgotten. The talismans also give a reason to talk about the deceased positively in the future. The honorary medals and certificates also honor those who make the donation possible. In 2017, there was a tragic incident where a child passed away after being

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rescued from a fire when her pregnant mother was in labor. When the mother delivered the baby, the deceased donation was completed. The CEO of Gift of Hope delivered the medal of honor at the child’s funeral. Later, the parents also received the “Tragedy to Triumph” award on behalf of the deceased child. Meanwhile, the mother also asked that the firefighters who got her and her baby to the hospital receive medals—for they made her child “able to be a hero and help others.” While telling how the visual representation of her child’s heroic act supported her in accepting the tragedy, the mother’s thanks to the firefighters also signified that recognizing all people involved in making deceased donations possible constitutes an important aspect of the honorary system. For the donor family, a decade-long friendship with the recipient post-donation brings lasting honor of the altruistic act. The donor family met one of her son’s recipients, and they have become close friends—at the time of the interview, she had just gone to the recipient’s sixty-fifth birthday party. She described the strong bond that brings some peace to her loss: So much has happened to [the recipient] over these years. He has buried his mother. He has buried a daughter since getting [my son’s] heart. He has welcomed new grandchildren. I often look at him, sit across from him and it is like my son’s right here inside him and it’s so weird, but it’s so beautiful.

She continued, I am just so grateful that I have my prayer really answered: How do you put a value on to ten years for [the recipient] or for any of these people? How do you put a value on that? The recipient piece of it, I truly believe there’s such power in bringing those two sides together. I know not everybody is interested in making those connections between donor families and recipients, but for people that do so, I think that it is something they can’t describe.

By tracing the processes of honoring deceased donations in Chicago, the analysis first shows that honorary incentives can be represented by concrete objects like the thank-you certificates and the medals provided by Gift of Hope; however, the heroic act itself provides a meaningful legacy for the deceased—in other words, the honor is ingrained in the narratives of remembering the deceased donors. For donor families, the honor also reaffirms their consent to donate their loved ones’ organs as life-saving gifts for others.

6.3.2 Bringing the Honor of Organ Donation to the Public’s Attention While conversations with the donor family provide crucial evidence for understanding how honorary incentives operate, the previous analysis has also highlighted the importance of expanding the willing donor pool. After all, if more people opted into the donor pool, there would be a higher chance that potential donors would have expressed their consent for deceased organ donations. In this section, we draw from the interviews to demonstrate the key aspects shaping people’s willingness to opt

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in—education and knowledge about donations, the means to express consent, and cross-group variations. Even though these aspects work to encourage people to become willing donors, recognizing differences across age groups and racial communities is also critical in fostering trust in the medical system—a determinant of support for organ donations. The first and most important factor directing public awareness of deceased organ donation is education—from information delivered in schools, organizations, and communities to incidents reported in the news. More than half of the interviewees first learned about transplants and organ donation when they were in high school, when peers around them start getting cars after turning 16. The donor family recalled, I am now 60 but I remember that when I was 16, I found information about donations when I got my first license. I was in California at the time, and we actually had education on organ transplant and donation in our human health curriculum, in our high school. So that’s where I was first introduced to the idea 44 years ago. After that, I touched upon the topic from predominantly either new stories in print or on the TV.

Discussions among peers are certainly important since the high schoolers mostly spend time with other students. Among the interviewees who mentioned that they learned about deceased donation in high school, almost all of them talked about the topic in school—either through the formal curriculum or informal conversations. One interviewee (adult woman) highlighted that since late teens are getting out of “institutional life,” it is a good time to approach the topic. Even though people may have different concerns about donation once they start families or enter other stages in life; “they can always change their [mind] if that happens—when they renew their licenses or through other means; so, it is not too early to consider signing up as donors” the nephrologist added. Other than organized efforts to promote donations such as school education and information provided by the Department of Motor Vehicles, the media play a major role in spreading information about donations. But from the interviews, another pattern of information emerges—people remember incidents where public figures promote donations much more than occasional reports on related research reports or calls for donations. The policymaker, social worker, and nephrologist all mentioned Jesse White, the Secretary of State of Illinois and an avid advocate of organ donations. As White shared his personal experience when his siblings needed transplants and got help, the publicity of the personal story became a memorable incident that strengthened the positive and honorable image of deceased donations. That said, though support from leading figures helps make the public aware of organ donation, the social worker commented that incident-based reports do not have a long-lasting effect on the younger generations. The informants were also aware of the major changes regarding the channels of communication—namely, much more information is currently spread through social media than traditional media outlets. As the nephrologist pointed out, “More discussion on the social media will certainly help, even if one’s expression of being a willing donor in a social media post is insufficient for legal consent.” They were

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referring to the debate about people expressing their willingness to donate but these expressions have been considered invalid in terms of qualifying as legal consent for donation. The policymaker addressed this issue and further added that open conversations about more inclusive means for consent are essential in a quickly changing world. She gave the decline of the car culture as another example. “As people are shifting to car-sharing and fewer people get their own cars and licenses, it is important to think about ways other than the license to get more people to express their consent.” The interviews demonstrate that even though there are many ways to raise public awareness about donations, the changing world also requires a corresponding adjustment in institutional and organizational designs. As the nephrologist put it, “The honorary system is not perfect, and we have to stay creative to incorporate the languages and ways that motivate people to show their support for the honorary acts.” Furthermore, this issue of developing languages to enhance people’s understanding of what donations involve, as many interviewees pointed out, is central in motivating support for deceased organ donations across racial and religious groups. Developing an inclusive donation program is paramount in a racially and culturally diverse country, particularly because much existing resistance to donations originates from an institutional racism that weakens trust in the medical system in the US. As the ethicist argued, the honorary system is also important as a system to build trust for families of the deceased to consider donations in agonizing moments. She elaborated: Because of the history of oppression and racial exclusion in this country, there’s been the sense that we use the bodies instrumentally for so many things. This would be the final moment of use, and that would be repugnant to many families…Especially since the kinds of deaths that would be the best for donation are sudden violent deaths, people haven’t really thought of themselves as donors. They’re young, they’re healthy, they aren’t thinking about death much.

The donor family had witnessed the resistance to donations as a result of the history of racism as she got to know an African American recipient over the years. “I know the recipient’s ex-wife needed a transplant, kidney transplant. They went to the family, but nobody was remotely interested in getting tested.” Whilst the donor family was surprised at such reluctance to donate, the recipient said he was not surprised and explained to the donor family that the resistance to donations “is a result of socialization and how we [African American communities] are trained to be aware of—and some people do not want to give any body parts to any White people.” Medical professionals also find this distrust prevalent, and harmful to both the medical and the honorary system. The nephrologist mentioned that in her daily rounds in a hospital with many African American patients, racial minorities struggle to show full confidence in doctors’ treatments. This distrust has disrupted not only donation processes but care delivery in general. However, ways to make the honorary system potentially more inclusive do exist. The recipient and recipient family interviewed are African Americans, and they talked about how the process of waiting for donations and eventually receiving one transformed their community. While waiting for an organ for 7 years, the donor’s

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sister went to the church and family to advocate for donations—and though some close friends got tested and were not good matches for her sister, this advocacy spread information and encouraged more community members to sign up as donors. Not surprisingly, the recipient’s successful experience also motivated more people in their church, workplace, and family to sign up as donors. The nephrologist also shared that in the post-transplant clinics, many recipients and their families asked about whether they could donate their organs postmortem—and eventually become tissue donors. To overcome the institutionalized racism and distrust, in other words, requires experiences and community networks to present organ donation as a life-­ transforming practice to help others. Just as the honorary system offers a bottom-up foundation to motivate organ donation at the community level and challenge the barriers of distrust, the system also includes room for tolerance and communication across diverse religious beliefs, whose teachings regarding the body, death, and burial rituals vary enormously. For example, the donor family has done many outreach programs for Gift of Hope over the years, and she remembered that she sat in with a Jewish doctor one time and “I mentioned that I talk to people about donation. She just said, ‘Oh my gosh, no, in the Jewish religion we have to go in whole2 and we are not supportive.’” But two other interviewees (both adult men) who have been involved in religious activities among the Jewish communities shared the observation that orthodox religious teachings can transform with technological innovations. In the 1990s, there were debates within the Jewish communities around organ donation, and with organized efforts to campaign and mobilize the idea of donation, at least some people changed their minds and began to accept organ donations. One other religious group often brought up in the interviews was the Jehovah’s Witnesses; they reject transfusions, thus making receiving organs more complicated because all blood must be removed from the organ and the possible need for transfusion must be addressed. Even though religious and spiritual beliefs can affect whether people are willing to opt in as eligible donors, decisive moments to overcome objections to organ donation occur when accidents happen, and the medical teams have to communicate with potential donor families to obtain consent for donations. And in those moments of end-of-life conversations, chaplains and pastoral care play central roles in helping families understand the meaning of donation and subsequent transplant. The OPO requester explained, “It becomes incredibly important that we do robust education and training with chaplains and palliative care on what donation is and what donation isn’t and give the chaplains a picture of the whole process.” As compared with a particular interpretation of the religious teaching, the language of donation during decision-making processes affects how the families perceive deceased donation and how the clinical practices can address concerns about full-body burial practices and show respect to the sacredness of the body. The first part of this analysis outlines approaches to motivate people to sign up as willing donors by raising public awareness about the dire organ shortage. The

 To be buried with the body intact.

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second part demonstrates that honorary incentives are important not only to encourage donations but to gain trust from diverse racial and religious groups. Some of the historical discrimination and existing practices pose challenges to the promotion of donations, and the honorary system allows more conversations about what one believes in or worries about, and possible ways to overcome the difficulties—the recipients’ testimonies as well as support from chaplains and pastoral care are cases in point. As the next section will show, living donation programs have also contributed to spreading the idea of organ donation as an altruistic act to a broader audience.

6.3.3 Living Donation Enhances Awareness of the Honor of Donation While living donations operate independently from deceased donations in clinics— namely, each transplant center develops its living donation program whilst OPOs facilitate deceased donation, living donation also serves as an important channel to disseminate support for honorary incentives. In the transplant center where the interviews were conducted, the living donation program’s transplant coordinator mentioned that the program creates something special for them—a thank-you certificate and a T-shirt. Her description of these small gifts highlighted the impact of living donation on reinforcing the positive image of organ donation in general: It’s a very cute T-shirt that has the Center’s emblem on the back. Then on the back, it has a little cartoon kidney, and it says, “I donated my kidney and all I got was this T-shirt.” Something fun that they will wear. The living donors wear it and then maybe someone will strike up a conversation with them and say, “Hey, you donated your kidney.” And they can say, “Yeah, it actually wasn’t that big of a deal. I was only in the hospital for one day.” And maybe strike up conversations with other people. A lot of the donors have told me that after they donated, they have done something at their work to raise awareness about donation. The best people to raise awareness are those who have been through it.

The living donor interviewed for this project shared a similar experience—he donated his kidney because he wanted to help, but not because of any other reason. He recalled seeing a post from a friend’s friend on social media, which motivated him to get tested. The friend’s friend received a living donor kidney while he was being evaluated, but he decided to become a non-directed living donor (i.e., donors who do not designate their recipients and, in this case, they do not get to know the recipient). Describing his motivation, the living donor said, Before the process, I did not talk to anybody, but I did a lot of reading and got comfortable with the idea…There’s a fine line between your ego involvement and just the idea of doing the right thing. I [was] what they call an altruistic donor. I didn’t do it to be a hero. But yeah, I got people applaud[ing] and I received some stuff. It made me feel good, but I also tried to make sure…my value is that I did this because [of] what my kidney can do, not to make me feel good.

For the donor, his big goal after having donated his organ is to lead more people to join the giving; or, in his words, to “plant the seed, so more people would consider

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donating their organs.” The drive and passion of this living donor have certainly been infectious. His wife, who was initially less supportive of the donation—primarily because the donor was sixty and relatively senior to be a living donor— changed her mind in the past years post-donation. She has been thrilled to see how her husband has become healthier than ever before, and they have had “a lot of good conversations and soul-searching stories with others” because of her husband’s donation. Even though she may not donate to a stranger, the living donor’s wife mentioned that she would be willing to donate her kidney if a friend or family needed a transplant. The wife’s support for donation after her husband’s experience echoes what the coordinator observed: Almost all living donors say that if they could donate again, they would. They say that I just want people to know maybe it’s something worthwhile. When we do some articles on living donations, people will come to them and ask about the donations and ask about what it was like. A lot of donors want to raise awareness. They are really open to talking to other potential donors about their experience.

These conversations characterize living donation as the catalyst for the honorary incentives of deceased organ donations. While living donors may not always want to go into the spotlight and receive a lot of publicity, they are willing to spread their motivation and experience with their friends, families, and co-workers. In sum, living donation exemplifies instances where donors do not hold onto their acts; rather, donors share their support and strengthen networks to honor the gift of organ donation. When discussing the honorary system and its operation in Chicago, all interviewees think that adopting the current system elsewhere is justifiable, though they also mention some ways to modify it: family tolerance, clinical stability, and hospital support. Family tolerance is believed to be rooted in a community of trust, so to improve this aspect requires institutionalized and organizational efforts to overcome existing racial discrimination in various aspects of social life. Another aspect is clinical stability, which includes professional coordination (particularly between hospitals and OPOs) and supervision of the programs, as well as how the honorary incentive system is built upon. The nephrologist gave a counterexample: in the pediatric kidney transplant program, parents used to be very willing to be living donors for their children. But a change in the allocation system placed children higher on the waitlist and the children did not need to wait very long to get transplants from deceased donations, so now fewer parents are willing to donate. Donation and transplant are also embedded in the broader healthcare system, where there are financial drivers to limit the length of hospital stays, even toward the end of life. The OPO requester said that since 2015, there is evident pressure to shorten patients’ stays in the ICUs because of insurance policies that push end-of-­ life care to be more cost-efficient. Such shortened stays restrict the time available to let eligible donors’ families process their grief before requesters bring up the topic of organ donation, but the separation between emotion and decision-making is vital for generating “good bereavement outcomes,” according to the OPO requester. This

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example demonstrates that structural changes in the healthcare system also impact organ donation and the ability to strengthen honorary incentives. In spite of these aspects that need improvement, interviewees unanimously expressed the view that they think the current system is the most favorable among all existing incentive models. The following analysis demonstrates how the interviewees evaluate the pros and cons of compensationalist and familist incentives.

6.4 Compensationalist Incentives As Chap. 5 recounts, before all states adopted the Uniform Anatomical Gift Act of 1968 and National Organ Transplant Act (NOTA) in 1984, there were debates about which incentives the United States should implement. Among many proposals, monetary incentives seemed viable. In the early 1980s, a regulated organ market appeared briefly in the US in the hope of developing an organ exchange industry. This development stimulated the rapid passage of NOTA in 1984, which banned financial incentives. Other proposals raised over the years included state-level tax deductions for organ donors and payments for funeral services, but these alternatives to honorary incentives were all rejected. Even though the culture of donation has been well-cultivated in recent decades and thus no monetary incentives have been legally implemented, our interviews show why monetary compensation may have seemed preferable for some. Overall, the more the interviewees are involved in organ donation and transplantation, the less inclined they are to support the adoption of monetary incentives. Among the fifteen interviewees, three people (donor family, coordinator, and living donor) who do not know anyone in the field of transplantation showed their preference for monetary incentives. The main reason to support such incentives is to solve the problem of organ shortage. A woman shared her thoughts: “I guess speaking from the recipient side, I would be the person who gets to live. I would be happy. I’d be like, if I needed something and I was going to die, I pay someone to give me their kidney. So, yeah, I like the monetary incentives.” But interviewees also immediately expressed their concerns; they asked, “Where would the recipients get the money to pay donors” (adult woman) or mentioned that “Though the monetary system is more probable to get more donations, I would say the honorary system is more ethical” (adult man). Indeed, for other informants who hesitated to support monetary incentives, relevant ethical concerns are hard to resolve. While they see the benefits of increasing donations by adopting monetary incentives, they also worried that such adoption would create more societal problems. Among all of them, the ethicist held that market forces are too overwhelming and penetrating, and donations should remain separated from that force. She argued, Too many things are in the marketplace. Love and family obligation are getting dragged in, reproduction is getting dragged in. It’s really not okay. It’s not right. It’s not a marketplace exchange. You should give whatever you can, you know, whatever is needed—if it is a kidney or care, whatever it is.

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For this reason, she hated the idea of monetary compensation. She elaborated: “I barely want people to be paid to be doctors for making a scientific advance. The whole way that we exchange money for care in American society is horrible.” The policymaker drew attention to similar controversies around the boundary between monetized exchange and organ donation. To her, the policies serve as gatekeeping tools to ensure the system is free of exploitation, for “in the U.S., we don’t feel comfortable with taking advantage of the underserved or underprivileged.” The donor family compares the current system with the monetary incentives and commented, Once you agree to donation in America, all of the medical cost basically [stops and is] transferred to the OPO. I would be interested in finding out, under the monetary system, are there people on the lower socioeconomic status being taken advantage of because of the financial incentive? Would there be more poor people doing it?

This concern is echoed by the nephrologist, who raised the point about the slippery slope of monetary incentives: “Would we be able to ensure that people [would] not go as far [as] to commit suicide in order to receive the compensation?” As the above responses show, the potential exploitation of the socially disadvantaged made many informants uncomfortable with implementing monetary incentives. The donor family emphasized that donation is intrinsically honorable: “I would not want the intrinsic goodness surrounding donation to be in any way affected,” though the recipient’s sister also said, “I could be convinced somehow that it would not be abused in any way.” Meanwhile, some interviewees have thought about ways to potentially include smaller incentives, as the policymaker put it: Removing disincentives is important but offering so much by the way of monetary compensation is difficult. I don’t think anybody should be given a monetary dollar amount, but there should be an easing of the restrictions that make it harder for us to support families through the process of donation.

The policymaker’s comment on providing support for families during donation engages with existing discussions about offering funeral incentives, an idea many informants were open to. One adult man said, “Since no one can use the money for any other purchases, it would be nice to let the donors have nice funerals.” In addition to accepting compensation for funeral services as a way to show respect to donors, another interviewee (adult man) pointed out this smaller compensation works because it is just a flat value. He elaborated: When you put a flat value, first of all, you’re not paying for the organ. You’re paying for the behavior. By having a set fixed amount, you avoid haggling. I can imagine, you say we’ll cover, what kind of casket can you have? How many like a graveside service or are you going to cover a memorial service? I mean, there are all sorts of questions that open up. I think you’d have to sort of say, you know, you can claim a deduction of five thousand dollars and it’s just to incentivize our behavior.

Even respondents who opposed the idea of monetary compensations for donors recognized the funeral services as acceptable. One man elaborated: I could see that as being an acceptable practice within the American culture. Because if you think about it, if you’re paying for [a] deceased donor’s funeral, you are giving a gift and

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But the interviewees also pointed out a few areas that require further clarification before the incentives can work well—including who offers the compensation, and what is covered. Respondents who expressed some doubts about the operation worried that even a smaller amount of compensation would change the implication of donations and violate individual autonomy. The recipient raised a question about compensating for funeral services: “Would that benefit some companies that want certain funeral services?” The ethicist was also concerned that without any regulation or restriction on the amount, even a smaller incentive can create market transactions—in other words, these smaller compensations can exert a slippery slope effect: Once you start it, it becomes a marketplace. Then someone else will offer you funeral services and give you $10,000. You have people desperate and like, yeah. So, they would do the exchange under the table. What a corrupt industry that is. That’s a whole other problem. You want to keep the act just, and you want it to act morally. I think you don’t pay people, even if you just pay the families of the deceased.

Though other forms of financial compensation such as state-level tax deductions received some support from respondents, they also shared similar if not more concerns about its operation. The policymaker commented on the issue of different state policies and tax forms that would challenge the adoption of a tax deduction. She said, “The states have to have some accountability for what they’re doing. I know Wisconsin has a $10,000 funding,3 for example. But I think it would be hard to have a nationwide policy.” The social worker also added that “it would be tough to put a dollar amount for how much is deducted,” for it is almost like “setting a value on the grief the families of the deceased suffer through.” Another interviewee (adult man) also highlighted the fact that, compared with funeral expenses, a set of tax deductions seems odd because the amount is different for everyone—in many scenarios, the deceased may not even need such deduction. He exemplified: “It is kind of funny because maybe the deceased was a child, and they were already tax deducted. To whom will the deduction be given? The families of the deceased? I may be very idealistic, but I just have a problem attaching a monetary value to something like that.” The social worker further noted that it is important to think through to what extent people would be motivated to donate because of incentives like tax deduction—especially for people who do not need deductions. She wondered: “Would this incentive bring an immediate and direct impact on the willingness to become donors?” Besides the challenging implications and operations of financial incentives like funeral services and tax deductions, additional issues were brought up with respect to how and when the incentives are offered to donor families. The OPO requester

 This is to support living donors. Similar to the funds that can be accessed from the NGO that provides funds for living donors for travel expenses, lodging expenses, and lost wages, one can either deduct the actual costs (up to US$ 10,000) from your taxes or access the NGO funds (Napolitano, 2004). 3

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mentioned a few critical issues when evaluating the possibilities of implementing these incentives: I’m conflicted. I think it depends on how they are offered. If the requester offers them prior to a family saying yes to donation, it’s inappropriate. If the assessment is done after consent for donation and it’s determined that the family has no means or resources—I think we should be able to help in some way and maybe it’s not even us, but there should be some, com…I don’t want to call it compensation, but some, assistance…It shouldn’t be a quid pro quo. Like it shouldn’t be a given that if you choose to donate, your loved one’s burial expenses will be covered. That’s not what I’m suggesting. I’m suggesting that it has to be a need-based assessment.

When thinking about potential ways to implement such assessment for assistance, she recalled a program in the United States, where families who need financial assistance can reach out. This assistance is provided by a foundation, established by other donor families who recognize the needs of some donor families and provide support in the form of stipends and scholarships. The nonprofit does not give the money to the donor families; rather, the money goes to service providers to offset costs for the families of the deceased. The OPO requester talked about how some flexibility can be added to this assistance program because as it operates now, “it just seems so cumbersome and like jumping through hoops at a time when a family’s already in grief and struggling … it’s more complicated and over-engineered than it needs to be.” She proposed that with the kind support of other donor families, perhaps the regulations can be modified so that, We should be able to allow the people who are donating money to say, do you want it to go to public education and outreach? Great. If so, it will. Or do you want to help support other donor families who can’t afford funerals and burials and things like that? And if they say “yes,” then we can put those contributions into a fund, and then we can make a direct payment to the service provider that the family picks. So, we’re not giving the cash directly to the family, the family’s picking the service provider. And we’re giving the payment directly to them from a protected fund.

The discussion on financial incentives demonstrates that for the interviewees to consider financial incentives, not only what is offered but how much and when the offer is brought up affect the willingness of donor families to accept the incentives. Currently, aside from the third-party foundation that raises funds for specific types of benefit for those in need, there is no compensation for donor families. Notably, however, the respondents, especially those involved in transplants, called for proper compensation for living donors. The policymaker noted: We should make it at least a zero-sum game. You know, like if somebody loses out on work, we should make sure that they are compensated for work. We should make sure that they will not lose their insurance coverage because somebody considers [this] a preexisting condition, those kinds of things.

The OPO requester and the social worker also highlighted that such support could similarly be critical for the families who are unable to afford even funerals, parking, or meals. In sum, the informants worried that providing cash as compensation to donors and their families would create an organ market that violates ethical norms. Such a

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system—as if one were exchanging body parts for money—might worsen the existing distrust of the system. And many interviewees were particularly concerned that compensation might lead to exploitation and abuse of the poor and socially disadvantaged. Meanwhile, some respondents were open to ideas like providing tax deductions or funeral services to the donors and their families, but acknowledged that actually implementing such measures might face challenges at the policy level and in clinical settings. Those who supported the smaller incentives found compensation to incentivize the behavior of signing up reasonable. At the end of 2019, the White House passed an executive order providing living donors with post-surgery medical coverage, accommodation, and meals. This new order signified an attempt to start addressing the need of living donors—although not to an amount that might actually incentivize organ donations.

6.5 Familist Incentives The first responses from interviewees regarding familist incentives were neutral as they had little opposition to the idea of family priorities but also hesitated to regard it as a suitable system for Chicago. Among those who showed understanding and support for the system, they highlighted the fact that it might incentivize people without monetary exploitation. Indeed, a form of familist incentive in the United States has already been adopted; the nephrologist brought up this example when she commented on this kind of incentive: I think it’s fine. I personally don’t have a problem with that. In fact, there’s a group called the National Kidney Registry right now that sets up familist incentives for living donors. If you decide to donate a kidney, you get priority if you ever go through a kidney failure. You can also take that priority and if you have a family member going through a kidney failure, they can get the organ. We can do this with a group of living donation, why can’t we do that with the deceased donation? I don’t see why we couldn’t work that out. I think it’s acceptable.

However, while compensationalist incentives caused concerns about exploitation, family incentives raised questions about individual autonomy among the respondents. There are two major concerns about implementing a large-scale familist incentive—one is to keep the consent to donation as an individual choice, the other is the possible implication of organ donations as a transactional exchange. Many interviewees raised the issue of being obligated to benefit kin under this system, and they asked some version of the question: “What if the family relationships were tense?” The coordinator of the transplant program explained: “Let’s say you’re not close with your parents at all or your siblings. Do you want them to get the benefits? You know, because people’s immediate family members are not always who they’re close with—like, people are estranged from their family members. So, if you limit the beneficiaries to those with blood ties, that could be disincentivizing.” The policymaker commented, “[programs that adopt familist incentives] sporadically exist

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in the United States. Does it help? Hard to say, I think it probably does. Could you take it to scale? When everybody could…it gets a little bit difficult.” When discussing the family priority right granted in other locations, such as mainland China, Israel, and Taiwan, respondents worried about possibly estranged relationships within families. The nephrologist and the social worker both mentioned that in a highly individualistic culture like in the United States, the familist model does not necessarily serve as an incentive. The nephrologist added, “We could probably consider a model like the one in Israel, where people get priority to receive donations if they have signed up as willing donors.” In other words, the direct benefit to oneself may work better than benefits to the families. Even the few interviewees, including the recipients and the recipient family, who supported the idea that immediate family get priority, changed their minds when they realized that such benefits are exclusive to kin. Familist incentives may also generate coercion within the family. The social worker said: I’m a little bit worried about that because the donation is just altruism … it’s not self-­ interest. But with familist incentives, there is a lot of pressure for families. If you have the capacity to save someone’s life in your family and you don’t, that makes people stressed out or upset. Sometimes policy forces hard choices on people and they feel obligated to make a certain choice in the life and death situation.

The ethicist also thought that the possible slippery slope effect—where extreme situations may happen because of policy design—is important to consider in bioethical policy implementation. “Even though the policy seems relational,” she said, “situations where someone kills themselves to allow their child or their loved ones to have organs cause problems. Or you coerce someone in your family to take advantage of them. These are the marginal cases, but some people violate the norms.” Another concern is that money can get involved in familist incentives. Opposing a capitalist market of organs, the ethicist objected to the possibility where the one donating an organ receives a larger inheritance or other forms of “compensation” for donating to their relatives: Why is money the only way we can show love and honor? Can’t it be that one has extraordinary nobility for doing something wonderful? Isn’t that enough? We don’t pay more money to soldiers if they take the risks or something, or firemen. So, these are acts that have to do with your duty as a father or a son or a fireman. We don’t reward that monetarily. We expect you when you sign up or when you’re thrown in as the same philosophy, you’re thrown into this life, you assume these duties, you pick them up and you enact them. You don’t do it because it’s a good bet. So as soon as money comes into it, you’re turning away from spiritual gains. You’re turning away from what should be more important than money, which is this extraordinary honor—the unending gratitude of a father to his son shouldn’t come down to money.

The OPO requester also mentioned that familist incentives may prevent the system from giving to those who have the greatest need. She explained: Our organizational philosophy is that gifts should go to the person most critically in need. And so, we really educate donor families as they’re consenting to donation. If the topic of direct donation arises, we will absolutely seek to facilitate that for them. It should be able

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to happen because, of course, if you could save the life of someone in your home family you would want to. But we also train our staff to communicate with potential donor families and explain why those in need get priorities [rather] than their extended families.

Even in the case of a voucher system,4 the OPO requester commented, there is no guarantee that an individual seeking a kidney “in return” will receive one. And in the clinical setting, requesters often get questions from a living donor or a deceased donor’s family about whether their loved ones are guaranteed returns in the future. Building on this observation, she worried that an overarching familist incentive may create unachievable expectations. While the interviewees explained reasons that make implementing familist incentives challenging, they also proposed some alternatives. The coordinator suggested, “Instead of granting families priorities, we can allow people to name three people to benefit from a deceased donation. I think it can be anyone you want. If you are closest with your closest family members, then you put your closest family members on there.” She used an example from the living donation program to show how one can be determined to help another even without a strong social tie. We had a donor who was going to donate here. The surgery was pretty much all set up. She was going to donate altruistically to someone on our list. And then at the last minute, they found something with the donor and they said she couldn’t donate here, but it was like a questionable medical thing. So, she went to another transplant center, and they approved her there even though we didn’t approve her here. She felt bad for the guy on our list who was supposed to get her kidney. So, she donated there but directed her kidney to him as getting like a payback kidney. She didn’t even know him, but she put his name down.

The living donor’s wife added, “It could be an incentive if it makes people feel that they could positively affect the life of somebody they know. She might just write it out to a friend. You know, maybe at some point in your life, you have a friend who needs a kidney, it could be yours, it could be somebody else’s. Why not?” But the policymaker pointed out that monetary transactions are still a concern in this alternative incentive. She elaborated: “What if I’m going to give you $50,000 so that you name me. So that means you buy the voucher, right? I believe in individual rights so I think that I should be able to name my voucher person and who or where I wanna name. If I just want it to be given to somebody, that should in some ways be my decision.” Besides, there could be some scenarios where the kidney voucher becomes a product to be exchanged and that people can be coerced into accepting. She observed, “If you owe $10,000 to the bank, you could give the kidney voucher to the bank, where the president will forgive your loan.” In sum, while developing programs based on the concept of familist incentives may be promising, these incentives also generate limitations and risks. Overall, familist incentives seem to many informants to be too restricted to incentivize more donations. Because only families get priority, respondents were concerned about whether people are close with their immediate families, which

 Such as the one mentioned organized by the National Kidney Registry, as the nephrologist mentioned. 4

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relatives would benefit from the donations, and how to avoid coercion among family members. In the donor family’s words, “You get into some muddy waters based on those extensions and those tentacles in the family.” Besides, there are other contextual reasons to object to familist incentives. One man argued, “We’re too disconnected in the States—we are all over the place, so to many people family ties are not strong social bonding.” Another respondent (adult man) drew upon his voluntary work in the homeless communities and noted, “There’s a lot of people who are going to be without family members.” These responses to familist incentives also highlighted why the current honorary incentives work in the United States. As the OPO requester noted, “One of the nuances of the American system is that donations are regulated by the Gift Act. The law does give you no influence on who can receive those gifts. So, you cannot discriminate against a person for class, age, sex, race, any of that religion.” Because the donated organs go to the most needed, people can trust that recipients will not be discriminated against in receiving transplants by virtue of socioeconomic status or their relationships with their families. Ultimately, the willingness to donate is one’s own choice, and so too is who benefits from a donation. The social worker’s perspective reflected those of many other interviewees: “I think it makes sense that a person does get some type of preferential treatment after donation but not at the expense of someone else.”

6.6 Conclusion Though the informants highlighted many concerns with current incentives and possible alternatives, the respondents also highlighted that discussing policy designs seems to be useful in itself for raising awareness about organ donation. As the social worker noted when she compared the presence of organ donation issues now to decades ago, “Part of the reason why donations would go up is that now we’re talking about the topic more…if we talk about the different incentives more, perhaps more people would opt in.” However, though more discussions can attract attention to the topic, the nephrologist commented that having a mandated system where everyone needs to decide to opt in or out from the willing donor pool may generate perverse outcomes. She said when it comes to expressing consent, trust in the medical system and professionals is central to the decision-making, so she worried that with recent political tension and widely circulated fake information, people may not always get accurate information in trying to understand policies and medical practices. In other words, creating more discussions about policy models may raise awareness, but this approach is not without its dangers. Relatedly, the presumed consent system was brought up by many interviewees during the discussions about different policy models of organ donations. Although the opt-out system is not one of the main incentives focused on in this project, respondents pointed out that in the field of transplants, adopting presumed consent has always been on the menu for policy considerations around organ donation in the

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United States. But the fact that the United States continues adopting the opt-in system highlights the most important concern for policymakers, ethicists, and medical professionals—namely, whether the regulatory implementations and their incentives endanger trust-building. Even though the opt-out system, in general, generates higher donation rates, respondents pointed out that such a system seems to not only delimit individual autonomy, which affects public trust in the government’s responsibility, but also raise concerns about whether the medical teams would do their best to treat patients, which in turn weakens trust in medical practices. Overall, no matter the roles, identities, and experiences of the informants, the honorary system is regarded as the most favorable incentive in Chicago because it strikes a balance between maintaining trust and encouraging organ donation. When motivating people to opt in, honorary incentives highlight that the act of donation is characterized by altruism —organ donation is a selfless act to help others in need. In contrast to other policy models, honorary incentives prevent donations from being regarded as transactions that take advantage of the poor or as restrictive exchange to benefit one’s family. Therefore, the interviewees in Chicago believe that these incentives are for the most part culturally acceptable and ethically legitimate. Notably, they also believed that the Gift Act is important in ensuring that organ donation does not get marketized or taken advantage of by those with power and wealth. In the clinical setting, additionally, honorary incentives give donor families the means to remember the good deeds of the deceased in their last moments and generate comfort and peace for the donor families in the long run.

Reference Napolitano, J. (2004, January 23). Wisconsin senate approves tax deduction for organ donors. New York Times, p. A12. Retrieved June 29, 2022 from https://www.nytimes.com/2004/01/23/us/ wisconsin-­senate-­approves-­tax-­deduction-­for-­organ-­donors.html?searchResultPosition=1

Chapter 7

Ethical Considerations About Three Incentive Models Based on Research in Chicago Wan-Zi Lu and J. Michael Millis

7.1 Introduction The current literature and interview research complement one another to justify why honorary incentives have worked in Chicago given the relative uniformity of the system the United States in general, as well as highlighting which issues need to be addressed if compensationalist and familist incentives are to be considered. Through the analysis, this chapter shows that honorary incentives motivate not only the act to donate but offer support for donor families and the stabilization of social relationships in the long run. Scholars and interviewees emphasized that the practices of honorary incentives should fulfill this premise, and informants felt uncomfortable about adopting different forms of compensationalist incentives or implementing familist incentives because of the risk that these alternatives might cause long-term guilt and regret in donor families or even harm the social ties that bind families and society together. The argument that fleshes out how honorary incentives meet the criteria to help donor families recover from grief and sustain mutual trust in society also emphasizes how the incentives build upon structural foundations and processual reinforcement. First, through a historical review of the legal reforms and previous developments, the analysis demonstrates that the legal basis of the Gift Act makes the notion of deceased donation as a form of gift-giving pre-eminent. This basis ensures when OPO requesters communicate with eligible donors’ families, it is W.-Z. Lu Polonsky Academy for Advanced Study in the Humanities and Social Sciences, Van Leer Jerusalem Institute, Jerusalem, Israel e-mail: [email protected] J. M. Millis (*) University of Chicago, Chicago, IL, USA e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 R. Fan (ed.), Incentives and Disincentives in Organ Donation, Philosophy and Medicine 133, https://doi.org/10.1007/978-3-031-29239-2_7

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made clear that the gifts enter a system in which the organs are allocated according to a standardized protocol based on need and long-term survival. Only where the donor family knows someone on the organ candidate list can the family “designate” that the organ go to a certain person, and even in that situation, the organ must be a match for that candidate. Importantly the donor family cannot limit the scope of the gift, e.g. requesting that the organ only go to a person of a certain religion or race. Meanwhile, as deceased donation does not fall under healthcare law, the act of donation depends on donors’ willingness (and not just the urgent demand for donated organs). Thus, the donors’ expressed consent plays a central role in determining whether medical teams proceed with organ procurement, and expressed premortem consent has been promoted by interpersonal interactions, such as education, public events, and media exposure of the positive psychological transformation of living donors and families of deceased donors. Interviewees who have been involved in transplantation for a few decades also praise the interplay of institutional, organizational, and interactional efforts in raising awareness of deceased donation, and such awareness becomes crucial for increasing the number of people signing up to express consent and for improving donation outcomes in Chicago—as Chap. 6 shows. While previous research has usually highlighted these structural foundations, this study also evaluates the dimension of time to underscore the long-term effects of donation that legitimize honorary incentives. Above all, at the time of transplantation from deceased donors, incentives (such as thank-you notes and medals) are introduced into the process only after eligible donors’ families have given their consent. OPO requesters explained that the sequence is essential to make sure that donor families do not feel lured into donations in exchange for something else. Agreeing to donate their loved ones’ organs out of willingness to help others is vital to assist donor families reaffirm the decision long after donations. How and when to approach donor families and encourage people to donate are also key issues for medical professionals at a time when social change is diversifying the channels of communication and there is a growing distrust of institutions. In contrast to honorary incentives, different forms of compensationalist and familist incentives raise ethical concerns and difficulties surrounding the practicalities in offering long-term support for donor families and existing relationships, and thus interviewees ranked these alternatives as less preferable than honorary ones. One big issue is the need to consider a potential “slippery slope” effect if monetary compensation or family priorities become legitimate. While direct cash lump sums make the boundaries surrounding commodification of the body ambiguous, other forms of compensationalist incentive such as tax deductions and coverage of funeral expenses can also indirectly support the legitimacy of organ markets because these incentives equate the body with a flat monetary value. Apart from the issue of assigning specific monetary values to organs, companies can earn money by paying donor families less than they receive from recipients and thus make a profit. In the case of familist incentives, some family members may be coerced into or feel obligated to donate on behalf of other members, even sacrificing their life or medical

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preferences in exchange for the priorities their family members would receive. Even though these are extreme cases, professionals in the transplant field emphasized that the incentives must be regulated to prevent people from taking advantage, or from being taken advantage of. The other issue is the practicalities of using these incentives to motivate deceased donation. In the case of tax deductions and payment of funeral expenses, many interviewees pointed out that the incentives may not serve their purpose because the donors are already dead and therefore do not benefit. In some cases, the benefits might not even apply—for example, a child would not need tax deduction, and one may not like or need the funeral-related services offered. Besides, given the current variations in tax laws across the various states in the US, implementing tax deductions for deceased donors would require extensive legal reforms. Additionally, familist incentives are not a good fit for contemporary American lives, where many live far away or feel very alienated from their relatives. Thus, some interviewees proposed that the priorities can be assigned to any three to five “beneficiaries” of the donors’ choice, but this system would again raise the question of whether people could buy their way into becoming beneficiaries. When analyzing each type of incentive, the authors consulted the relevant literature. While the interview study echoes many findings in the existing literature, this research builds on the literature by illustrating how different degrees of involvement with transplant shapes people’s attitudes toward different incentives. As organ donation incentives have been constantly reevaluated in the United States in the past half century, there have been substantial studies on the ethical and policy implications of different incentives (Heyman & Ariely, 2004; Levy, 2018). Because of the brief period where the compensationalist model was adopted, there has been especially extensive scholarly discussion on these incentives (Satel & Cronin, 2015). In contrast, familist incentives have been a relatively recent phenomenon globally and policy discussions in the United States have rarely taken this model into consideration. As a result, the available literature on these incentives is scant (Arnold et al., 2002). Therefore, in addition to contributing to the literature with a comparison across the three incentives and thus presenting a holistic review of all policy choices, the interviews reflect the fact that, compared with medical professionals working in the field of donation and transplantation, the general public is generally more open to other alternatives. The rest of the chapter outlines the key ethical issues around different incentives separately, yet it compares compensationalist and familist incentives as supplementary to honorary incentives—the current running model in Chicago and the United States. The first section demonstrates the key structures to justify honorary incentives and delineates the processes where these incentives affect individuals, communities, and the public’s willingness to consent to deceased donation. The sections on compensationalist and familist models lay out some support yet many concerns in relation to adopting these incentives in US society. The analysis closes with implications for policy adoption and applying these views to implementing incentives in other contexts.

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7.2 Honorary Incentives This analysis aims to explore what makes honorary incentives the preferred system among existing studies (Delmonico et al., 2002; Glazier, 2018) and for the interviewees. There are three levels of structural foundation: at the institutional level, the analysis highlights the legal foundation of the Gift Act in establishing the basis of organ donation as altruistic gift-giving. With this legal support, the Organ Procurement Organizations (OPOs) can operate independently to build trust with eligible donors’ families. This second level of the analysis delineates the organizational interactions that makes OPOs successful in rolling out honorary incentives. Finally, without interpersonal interactions and media reports, the public would not have fostered the culture of organ donation. Accompanying the three structures are three scenarios characterizing the importance of timing in motivating deceased organ donation: education in daily lives, time-sensitive interaction in hospitals when eligible donors are identified, and the interplay of the two—where living donors and donor families affect how their families and communities look at donation and transplantation. The analysis concludes with a section on the current challenges of improving donation rates with honorary incentives, with suggestions also at the legal, organizational, and interactional levels.

7.2.1 Gift Act: The Institutional Foundation of Honorary Incentives In the review of the United States’ institutional framework for organ donation in Chap. 5, the authors have described how organ donation transitioned from the absence of regulation to a regulated market to the ban on compensationalist incentives. This developmental process, which created the Uniform Anatomical Gift Act of 1968 and National Organ Transplant Act (NOTA) in 1984, has paved the way for the honorary incentives. In our exploration of how different incentives may or may not work in the US, this legal framework sets up two premises: first, the regulation has established legitimacy for—and only for—honorary incentives in the country for more than half a century, and thus almost all interviewees felt familiar with the honorary incentives but not other policy models. Second, when compensationalist and familist incentives were discussed, the respondents talked about them hypothetically, and recognized that implementing those incentives would require policy change. Accordingly, the discussions about incentives other than honorary ones usually proceeded with comparisons with the effect and ethical implications of existing honorary incentives. Having outlined the two premises, we also want to note that some interviewees, as in the case of current studies (Radin, 1996; Satel & Cronin, 2015), underscored the importance of the legal foundation to implement honorary incentives. The OPO

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requester differentiated between the gift law and the healthcare law and recognized that the gift law ensures that donation is a personal decision that allows potential donors to sign up while having no influence on who can receive the gift. This institutional framework leads to the organizational design that ensures separate medical teams support donors and recipients respectively, as well as safeguarding donor anonymity. The social worker also commented that with the institutional structure in place to advocate donation as gift-giving, the honorary incentives have been the main guiding principle in motivating donation and evaluating potential donors.

7.2.2 The Donation Experience The law designates the independent organizational network, the Organ Procurement and Transplantation Network (OPTN), to facilitate deceased donation, and this organizational basis is vital in carrying out and incentivizing donation using honorary incentives. Reflecting Healy’s analysis of OPOs (2006), the interviewees in this study highlighted the importance of organizational support. In addition, the study fleshes out the timing, location, and interaction between OPO staff and eligible donors’ families that determine whether honorary incentives work for encouraging deceased organ donation. As the OPO requester described, when OPO staff talk to eligible donors’ families, they would bring up the possibility of donation only when the most intense phase of grief has passed. Also, there are rooms away from the wards and ICUs to talk to patients’ families. This separation in time and space is crucial for building a conversation about donation in which the potential donors’ families can feel comfortable. Similarly important is the skill of requesters to “weave donation into that conversation as a natural fit for who [the willing donor] was as a person” and the requester emphasized that such skills are essential for accomplishing the donors’ will to donate. Following the conversations, the objects to honor the deceased donation (e.g., certificates, medals, thank-you notes) are given after the family consent and the clinical work of donation has been completed. During our interview research, the OPO in Chicago—Gift of Hope Organ & Tissue Donor Network—shared an internal study they conducted showing evidence that even the decision to donate has a long-term positive impact on deceased donors’ families. In the study, a requester surveyed three groups of potential donor families: (1) those who said “yes” to donation, with procurement, transplantation, medical education, or research outcomes; (2) donor families in spirit, people said “yes” when asked to donate but where, for various reasons, the actual donation did not take place; (3) families who said “no” to donation. While 66% of donors’ families (i.e., Group 1) saw the donations as a positive experience that helped them cope with grief, 78% of “donor families in spirit” (i.e., Group 2) identified donations as having been helpful in their process. In other words, this result supports the premise that the decisions to make donations, guided by the conversation with the requesters, comfort the families of the deceased in the long run.

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7.2.3 Cultivation of a Donation Culture In the literature on organ donation, the United States has exemplified a society where a donation culture has been cultivated (Lock, 2002). This study in Chicago not only demonstrates the strong basis of this culture but also illustrates what strengthened its development in the past decades. First, when the interviewees recalled their first encounters with the concept of organ donation, they all brought up their discussions in high school and experiences at the Department of Motor Vehicles. Whether the interviewees were in their early 20 s or their late 70 s, this early exposure to information about organ donation as well as the concept that organ donation is an altruistic gift-giving, established a solid ground for implementing honorary incentives—where the public understand the lifesaving promise of organ transplantation and recognize the honor of organ donation. As the policymaker and other transplant team members mentioned, education about organ donation as such profoundly shapes the positive public image of this act. In addition to echoing existing studies that show the successful promotion of organ donation in the United States, this study also fleshes out recent developments that solidify the donation culture that has been cultivated. As the social worker commented, the fact that organ donation has been widely discussed and related policies have been debated furthers the public’s understanding of organ donation. The stronger the public awareness, the more likely people are to sign up as willing donors— and according to the OPO requester, expressed consent made conversation with eligible donors’ families easier and they are more likely to agree to donation in the clinical setting. Additionally, the increased channels to find donors, spread news about donation, and acknowledge the honor of donation help strengthen the donation culture. In particular, social media platforms have introduced some interviewees to organ donation; the living donor was motivated to become an altruistic donor because of a forwarded message on one platform. When people use a variety of means to exchange ideas, organ donation can increase its presence in the public discourse.

7.2.4 Gift-Giving and the Psychological Impact of Organ Donation When researchers began studying the social implications of organ donation, one area that attracted much scholarly interest was the psychological impact, especially on donor families and recipients (Simmons et al., 1977; Fox & Swazey, 1992). This study reaffirms some of those findings and also demonstrates the relational and organizational support that carries a positive psychological impact. The interview with the donor family is particularly illustrative of how the honor of donation helped the family cope with grief after their young son’s sudden death. The donor family and her husband reacted to the son’s expressed consent joyfully and were

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determined to help him complete the gift-giving. Over the years, they talked to friends and families about the experience of deciding to donate, how the altruistic act brought them peace, and the gratitude they felt for having made the decision they did. They made flyers and cards to tell the story of their son’s donation. These self-­ motivated actions spread the honor of the donation and reinforce the meaningfulness of donation. As the OPO requester observed, the psychological impact is one key aspect to consider when governments implement incentives for deceased organ donation, and she supported the adoption of honorary incentives because, with other types of incentives not involved, donor families may feel more at peace with the decision to donate in the long run. For example, she mentioned that requesters always had conversations about how donation might affect how the families would look at the death years afterward, and this consideration emphasizes the bravery and honor of donation. The OPO requester therefore worried that compensationalist and familist incentives might motivate the families to donate upon the death of a loved one, but that they would later realize that they had not given full consideration to the implications of donation. Furthermore, the social worker brought up examples where the medals honoring a deceased donation had been embedded in donors’ headstones, as the families saw the act of giving as definitive to their loved ones’ lives. Where gunshot victims’ families find organ donation helps to transition the role of the deceased from victim to hero, the psychological impact on the families highlights the relational aspect of honorary incentives. Similar transformations happened to both the living donor and his wife. The living donor underscored that he decided to donate not because of the honor or praise that came with donation—he just wanted to help others. His research pretransplant illustrated that because there were no incentives other than honor, he could describe clearly to his family and friends that he was not donating because of money or obligation. In contrast, where other incentives are in place, sometimes donor and donor families may be blamed for sacrificing their own or their loved ones’ lives to gain something (Halverson et al., 2018, also mentioned by the nephrologist and the ethicist). Moreover, the living donor’s wife also revealed that she embraced the act of organ donation much more after her husband’s donation given the “soul-searching” conversations they had with their friend’s post-donation. This change indicates that the positive psychological impact is not only on donors and their families but also encourages people in their social circles to embrace organ donation.

7.2.5 Legal, Organizational, and Community Efforts to Overcome Existing Challenges The operation of honorary incentives in Chicago relies on legal, organizational, and interactional foundations; similarly, to overcome the challenges with existing policies—namely, motivating more people to donate or sign up as willing donors—the

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interviewees also pointed out necessary support at the three levels. These suggestions build the basis for policy recommendations, and echo findings in existing studies. First, although the new channels to advocate for organ donation bring the topic to the public’s attention, the nephrologist and policymaker were both worried about misinformation and the lack of legal support for expressed consent on social media. Like those scholars who highlight the continuous legal reform to address current issues surrounding donation development (McCarrick & Darragh, 2003; Levy, 2018), two of the interviewees also acknowledged the possibilities of recognizing expressed consent on social media platforms as legal, as well as monitoring the accuracy of information about donations and transplants. In both the legal and organizational designs, living and deceased donation can help reinforce each other’s legitimacy. The policymaker saw the ongoing discussion about reimbursing living donors as a positive outlook for removing disincentives. The later legalization in fall 2019 of such reimbursement exemplifies a legal effort to underscore the life-saving impact of organ donation. Regarding the development of deceased donation, the OPO requester mentioned NGO support for donor families in need. But she also emphasized that the support offset expenses (for living donors) rather than being presented as a lump sum. Aligning with the principle of providing need-based assistance, the requester’s example underscores the continuous organizational efforts to ensure that potential donors and their families do not bear even more financial burdens when they perform altruistic acts. Another structural challenge that has been brought up exemplifies the difficulties imposed by the broader trajectory of commodifying care (Conrad, 2005). When patients cannot stay long in hospital because of insurance requirements, the OPO staff has limited time to initiate conversations with eligible patients’ families when they are processing grief and shock about the sudden death; the market pressure for cost-efficient care therefore runs the risk of undermining patients’ and their families’ willingness to donate organs. The last point on the privatization of care and its consequences reveals a larger problem whose resolution requires structural transformations. This is also the case with the problems associated with existing social cleavages and the subsequent distrust of the medical system, which also require substantial change at the interpersonal level. With these problems, community efforts are necessary—as pointed out by the interviewees and also by the literature on how racial tension worsens care delivery (Dreachslin et  al., 2000). The ethicist described how African American communities have long suffered from discrimination in clinical trials and medical treatment, and these inequalities result in the communities’ lack of trust in receiving care. As Daw (2015) shows, in the transplant world, the criteria have not given African American recipients equal access to donated organs as compared to other ethnic groups. These structural inequalities cause distrust and the minorities’ unwillingness to donate—the donor family also observed this unwillingness when she shared her experience with different groups. However, the recipient and her sister’s account also illustrates how trust can be fostered, as they shared the impact of the donation they received and how that donation transformed their lives with the members of their community.

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7.3 Supplementary Incentives: Implications for Policy Change Even though the donation culture cultivated in the United States celebrates deceased donation as an altruistic act, professionals in the field have been much more cautious about defining organ donation as an “heroic act.” The evaluation of and hesitation regarding heroism suggests implications for the adopting of compensationalist and familist incentives in the US. Both recent debates (Zeiler, 2014) and some interviewees (social worker and OPO requester) pointed out that heroism might prevent donors and their families from evaluating the intense post-transplant care needed or long-term psychological effects—for instance, donations may not always save patients, and some donors or families may feel sad or even guilty if a donated organ fails to function in the recipient’s body (Simmons et al., 1977). In other instances, donors may expect communication from recipients, but recipients do not always want to make contact. Such disappointments could worsen the donors’ emotion if they embarked on donation with an image of the glory associated with such a “heroic” act. The protocols to evaluate donors’ motivation and expectation are also used to consider the implementation of compensationalist and familist incentives, and this consideration usually leads to hesitation in adopting either of those two types of incentive, given potential coercion pretransplant and possible consequences posttransplant. In the subsequent sections, we review the literature and the responses in interviews to understand the major concerns around adopting incentives other than honorary ones in the United States. The review shows that when professionals in the transplant field considered additional incentives, it was these professionals who worried the most about how far some people might take the incentives. In other words, even if most people would not treat it as a business matter or exploit others by using compensationalist and familist incentives, the policies need to prevent any possibility of such cases occurring.

7.3.1 Why (or Why Not) Compensationalist Incentives? As discussed in much of the social sciences literature (Becker & Elías, 2007; Rossman, 2014), the idea of monetary compensation for intimate goods such as human organs has led to controversy and such exchanges are generally deemed repugnant. This scholarly observation characterized most interviewees’ initial response when asked about compensationalist incentives. For professionals working in the field of transplantation, they rejected this option because of the fact that the underprivileged might be more prone to donate for immediate monetary compensation. Thus, the financial return would outweigh. the intention to help others. The policymaker’s noting how the disadvantaged population might become victims of the compensationalist incentives echoed this

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dominant view among the transplant community (Scheper-Hughes & Wacquant, 2003). The ethicist was even more concerned, believing that capitalist influences have become too all-encompassing in contemporary society, and the body may be the last bastion against commodification. In contrast, people who were less familiar with the professional debates on incentive systems showed some openness to considering compensationalist incentives as an option. As the living donor and a woman pointed out, if money effectively motivates donation, why not? They reflected a different—though less pronounced—perspective, which is to regulate fraud and organ trafficking but allow some compensation to thank donors (Satel & Cronin, 2015). The contrast of the two views, first of all, advances the current literature by showing the different priorities (i.e., ethical implication versus increasing the number of donations to save lives) based on how involved people are with the transplant profession. For the nephrologist and the ethicist, the regulatory model has to prevent extreme cases (e.g., taking one’s own life to benefit from donation incentives). However, for some members of the public, the key issue is the potential to alleviate organ shortage. The discussions on forms of compensations other than lump sums of money demonstrate even more variety across the population based on their experiences and degrees of familiarity with transplant practices. As compared to monetary compensation, some interviewees thought tax deductions might work as legitimate incentives, but further into those conversations, they usually found critical problems to resolve before such adoption. One major concern is which government authority would carry out such a deduction. As the policymaker explained, the current tax framework in the US—with great variations across different states—would require substantial legal reform to implement a uniform tax deduction. Even in the case of state-level bureaus carrying out tax deductions, the question is how much should be deducted. Scholars (e.g. Heyman & Ariely, 2004) and the social worker alike worry that because tax can be translated into monetary terms, tax deductions still inevitably place a value on how much bodily organs or lives are worth. The other two concerns associated with tax deduction are who receives tax benefits, and the potential slippery slope effect in policy making if tax deductions were legalized. First, as some informants raised in the interviews, it is not clear to what extent the tax deduction benefits the deceased if they have passed away. If the deceased is a child, for instance, the child does not have to pay tax in the first place. The question still comes down to whether the amount to be deducted among all individuals would be the same, even if some do not earn enough to make a tax deduction relevant. Additionally, the legalization of tax deductions may open a door to other types of compensationalist incentives for deceased donation. The argument could run along the lines of, “If a tax deduction already estimates that a donation is US$ 2000 deductible, why don’t we pay the donors the same amount directly?” This possibility leads back to the controversy around commodification of the human body. Compared to the hesitation about adopting tax deductions, many interviewees supported payment of funeral expenses—and this support contrasts with the views held by ethicists and policymakers (Arnold et al., 2002; Spital, 2005). Even though

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administrators in the US have rejected proposals to implement funeral coverage, many interviewees embraced this idea because they thought this form of compensation benefits the individuals more directly than other types of compensationalist incentives. As the social worker pointed out, a headstone from the OPO made donor families much more at ease when thinking about their deceased loved ones as donors rather than victims of sudden death. To underprivileged families who cannot even afford the funerals, having funeral expenses covered can bring peace to many families’ mind as they experience the ritual of remembering the deceased. That said, the interviewees pointed out important issues to address before implementing payments for funeral expenses: when to bring that up, where the money comes from, and how to receive the support. First, when to make the donor families aware of the compensation may affect people’s willingness to consent to donation. The OPO requester underscored that compensation of any form should not be brought up before the family consent to the donation; otherwise, the offer may appear coercive and potential donor families can become reluctant to donate. As in the case of tax deductions, a remaining question, even if funeral compensation is legalized, is which authority regulates and provides this compensation. As one respondent (adult man) asked, are the standard ceremony and casket covered? What services are going to be used for reimbursement? Echoing his concern, the recipient worried that certain companies would benefit from the incentives. The slippery slope effect may also be present in this case. The ethicist worried that some companies could make a business out of these incentives by paying donor families to choose their services. The commodification that violates ethical norms would remain likely to occur. As the analysis of both scholarly and interviewees’ consideration of compensationalist incentives show, professionals in the transplant field saw regulations as a way to prevent extreme cases where people make use of the incentives to harm themselves or make profits from harming others. Regulations, in this regard, serve to prevent “worst case scenarios.” Taking a different perspective, the public does not always consider extreme cases, but they evaluate the incentives based on their effect in motivating and the extent to which incentives successfully increase the number of donations. But the overwhelming abhorrence of commodifying the body makes the adoption of compensationalist incentives unlikely—an abhorrence that can be further illustrated by two cases. First, in contrast with how deceased organ donation in the United States has strictly remained a gift, elsewhere organ and tissue donations have generated lucrative economies (Waldby & Mitchell, 2006). Many therefore see the field of organ donation as the final battle to keep capitalism at bay (Shaikh & Bruce, 2016). In addition, the legalization of compensationalist incentives runs the risk of contributing to global organ markets. Researchers and activists (Scheper-­ Hughes, 2001; Scheper-Hughes & Wacquant, 2003) have attempted to stop global organ trafficking, and they believe that legalizing compensation in domestic organ exchange can tempt the poor to exchange organs and tissues for a quick financial reward.

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7.3.2 Why (or Why Not) Familist Incentives? While the worries about compensationalist incentives originate from possible exploitation and moral contestation, scholarly accounts (McCarrick & Darragh, 2003; Pham, 2021) and interviewees’ responses did not assess familist incentives as “wrong.” Instead, the hesitation to adopt familist incentives always pointed out that these incentives might fail to encourage donations because of impracticalities. First of all, the biggest concern has been that family benefits unnecessarily limit donation to an act on behalf of family members. In contrast to honorary incentives, where a donation aims to help the most acutely ill or bestow the greatest benefit as measured by life years saved to society, family incentives suggest the donation is primarily, or even solely, being made for the benefit of one’s own family. The social worker and the transplant coordinator pointed out that living donation still predominantly happens within family circles (although nondirected donations are increasing) because living donation involves some medical risk and cost for living donors. However, there are of course no medical risks involved for the donor in a deceased donation; thus, adopting incentives that typify a donation as benefiting the family restricts the image of donation as doing “social good” (also see Fox & Swazey, 1992). In addition to restricting the image of deceased donation, the presence of family incentives can create false expectations, especially as donation outcomes often cannot meet the exaggerated hopes of donor family members. The OPO requester drew from her experience and described how families of deceased donors sometimes wanted to designate organs for their relatives in need of transplants or asked whether the donation could guarantee a quid pro quo return in the future. However, with this kind of unachievable expectation, the requesters usually had to explain honestly that there is no guarantee of saving their loved ones’ lives, either now because of matching issues in the case of a designated donation, or later in the case of attempting a quid pro quo scenario. Accordingly, if familial incentives are adopted, people may be motivated by the hope of receiving something in the future without prioritizing what may be the choice that best represents the preference of their brain-dead loved ones. In the long run, this expectation can worsen the image of deceased donation. This is the concern that the policymaker and the nephrologist shared—“familist incentives might work in occasional cases, but it is hard to evaluate the overall impact on the transplant field when they are taken to a broader scale.” Even for those who did not find familist incentives hard to adopt, they wondered how to roll out these incentives. These informants (transplant coordinator and adult man) asked why people could not be allowed to choose freely who they want to give their organs to rather than limiting the pool of possible beneficiaries to those with blood ties. They proposed that a donor could name three people to receive priority based on their donation. However, the ethicist and policymaker pointed out the potential for fraud associated with these incentives. By allowing the naming of family members, the ethicist argued, people—especially the less advantaged in a family—may be coerced to donate to “benefit” other members. This argument is supported by studies where familial obligations to donate shape who donates in the

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family (Crowley-Matoka & Lock, 2006; Crowley-Matoka, 2016). Moreover, the policymaker noted, people can also make a business out of incentives where one can name others freely. For instance, people could pay others to be listed as those receiving “priorities” for future donations. These debates about the practicalities of adopting familist incentives also highlight the unique family dynamics in the contemporary urban US. Many interviewees who embraced the idea of these incentives pointed out that the American context is no longer characterized by close familial relationships. When these respondents suggested that rather than the first-of-kin receiving priorities, willing donors could name their friends or people they are close to, it highlights the fact that the possibility of making one’s own choice about who to donate organs to seems relevant to these interviewees. However, although this description captures the general current situation, the authors would like to point out that these informants reflect urban social life, and people in rural areas may still find family ties equally, if not more, important than other social relationships. Had the interviews been conducted in rural Illinois, for instance, the responses could have been different. That said, when the interviewees in this study underscored their recognition of contextual differences across countries and thus supported the adoption of familial incentives elsewhere, they highlighted their appreciation of the importance of the connections between local cultures and donation incentives. This represents another reflection of the aforementioned cultivated culture of organ donation (Lock, 2002) that contributes to the general preference among our interviewees for the honorary incentives, while familist incentives clearly emerged as the next most preferred option.

7.4 Conclusion The evaluations of honorary, compensationalist, and familist incentives by our Chicago interviewees demonstrate that policymakers, ethicists, and medical professionals in the transplant community do not see incentives only as related to affecting on-the-spot decisions. Instead, they consider why donors (and the families of eligible donors) might be motivated to consent to donation, both in their daily lives and in urgent clinical settings. Similarly important is the effect posttransplant. When evaluating different incentive models, scholars and interviewees alike asked questions similar to these: How would the donation affect the lives of donor families in 5 days, 5 years, 50 years? How would these decisions shape their social circles and even the public image of donation and transplantation? The current honorary incentives seemed to many scholars and all our interviewees to provide the most satisfying answers to these questions. Deceased donation brings peace to families in grief when they see their loved ones helping others in need. Where eligible donors have opted in premortem, eligible donors’ families and OPO staff proudly and actively aim to fulfill the wishes of the dead. The fact that these donors expect nothing in return reinforces the public acceptance of organ donation as gift-giving. Through education, media reports, and other public events,

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people come to recognize the altruism of deceased organ donation with its implied connections between donor families and recipients, opportunities to overcome resistance to donating, and the continuous cultivation of a donation culture. In contrast, when money gets involved—even in the form of tax deductions and reimbursement of funeral expenses—a specific amount is created that equates to the worth of a deceased donation. Thus, donor families might wonder whether the donation truly represents the will of the deceased and may even feel guilty about making such a decision on behalf of a deceased loved one. Furthermore, monetary compensation has a detrimental effect on the image of organ donation, defining it as a form of trade, which does not help promote a broad acceptance of the idea of donation. Familist incentives also fail to enlarge support for donation: not only would families develop expectations for returns that are in fact not guaranteed, but the restriction on beneficiaries would make donation less appealing to the general public. The analysis reflects a variety of opinions found among our Chicago interviewees, which may be representative of both Chicago and, possibly, the urban US as a whole. Family ties are much weaker in urban areas than in rural areas, so familist incentives do not seem appealing to most respondents. The commodification of care in the US also makes policymakers and researchers much more reluctant to see any monetary involvement in organ donations. While incentives other than honorary ones contradict the current values and preferences in the United States, a different context might significantly change the applicability of such incentives. The evaluations by our Chicago interviewees demonstrate that all incentives have to face the trade-off between motivating donations to save more lives and avoiding exploitation or coercion. To sustain donation programs worldwide, public trust is vital—and such trust builds on a legal basis to regulate donation, accountable systems that prioritize donor families’ feelings, and experiences which act for the “common good” while ensuring the individual welfare of everyone involved.

References Arnold, R., Bartlett, S., Bernat, J., Colonna, J., Dafoe, D., Dubler, N., et al. (2002). Financial incentives for cadaver organ donation: An ethical reappraisal. Transplantation, 73(8), 1361–1367. https://doi.org/10.1097/00007890-­200204270-­00034 Becker, G. S., & Elías, J. J. (2007). Introducing incentives in the market for live and cadaveric organ donations. The Journal of Economic Perspectives, 21(3), 3–24. https://doi.org/10.1257/ jep.21.3.3 Conrad, P. (2005). The shifting engines of medicalization. Journal of Health and Social Behavior, 46(1), 3–14. https://doi.org/10.1177/002214650504600102 Crowley-Matoka, M. (2016). Domesticating organ transplant: Familial sacrifice and national aspiration in Mexico. Duke University Press. Crowley-Matoka, M., & Lock, M. (2006). Organ transplantation in a globalized world. Mortality (Abingdon, England), 11(2), 166–181. https://doi.org/10.1080/13576270600615310

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Daw, J. (2015). Explaining the persistence of health disparities: Social stratification and the efficiency-equity trade-off in the kidney transplantation system. The American Journal of Sociology, 120(6), 1595–1640. https://doi.org/10.1086/681961 Delmonico, F., Kahn, J., Arnold, R., Youngner, S., Scheper-Hughes, N., & Siminoff, L. (2002). Ethical incentives  — Not payment  — For organ donation. The New England Journal of Medicine, 346(25), 2002–2005. https://doi.org/10.1056/NEJMsb013216 Dreachslin, J., Hunt, P., & Sprainer, E. (2000). Workforce diversity: Implications for the effectiveness of health care delivery teams. Social Science & Medicine, 50(10), 1403–1414. https://doi. org/10.1016/S0277-­9536(99)00396-­2 Fox, R., & Swazey, J. (1992). Spare parts: Organ replacement in American society. Oxford University Press. Glazier, A. (2018). Organ donation and the principles of gift law. Clinical Journal of the American Society of Nephrology, 13(8), 1283–1284. https://doi.org/10.2215/CJN.03740318 Halverson, C., Crowley-Matoka, M., & Ross, L. (2018). Unspoken ambivalence in kinship obligation in living donation. Progress in Transplantation (Aliso Viejo, Calif.), 28(3), 250–255. https://doi.org/10.1177/1526924818781562 Healy, K. (2006). Last best gifts: Altruism and the market for human blood and organs. University of Chicago Press. Heyman, J., & Ariely, D. (2004). Effort for payment: A tale of two markets. Psychological Science, 15(11), 787–793. https://doi.org/10.1111/j.0956-­7976.2004.00757.x Levy, M. (2018). State incentives to promote organ donation: Honoring the principles of reciprocity and solidarity inherent in the gift relationship. Journal of Law and the Biosciences, 5(2), 398–435. https://doi.org/10.1093/jlb/lsy009 Lock, M. (2002). Twice dead: Organ transplants and the reinvention of death. California University Press. McCarrick, P., & Darragh, M. (2003). Incentives for providing organs. Kennedy Institute of Ethics Journal, 13(1), 53–64. https://doi.org/10.1353/ken.2003.0006 Pham, V. (2021). Cash, funeral benefits or nothing at all: How to incentivize family consent for organ donation. Review of Behavioral Economics, 8(2), 147–192. https://doi. org/10.1561/105.00000136 Radin, M. (1996). Contested commodities. Harvard University Press. Rossman, G. (2014). Obfuscatory relational work and disreputable exchange. Sociological Theory, 32(1), 43–63. https://doi.org/10.1177/0735275114523418 Satel, S., & Cronin, D. C. (2015). Time to test incentives to increase organ donation. JAMA Internal Medicine, 175(8), 1329–1330. https://doi.org/10.1001/jamainternmed.2015.2200 Scheper-Hughes, N. (2001). Commodity fetishism in organs trafficking. Body & Society, 7(2-3), 31–62. https://doi.org/10.1177/1357034X0100700203 Scheper-Hughes, N., & Wacquant, L. (Eds.). (2003). Commodifying bodies. Sage Publications. Shaikh, S., & Bruce, C. (2016). An ethical appraisal of financial incentives for organ donation. Clinical Liver Disease, 7(5), 109–111. https://doi.org/10.1002/cld.548 Simmons, R. G., Klein, S. D., & Simmons, R. L. (1977). Gift of life: The social and psychological impact of organ transplantation. John Wiley and Sons. Spital, A. (2005). Should people who commit themselves to organ donation be granted preferred status to receive organ transplants? Clinical Transplantation, 19(2), 269–272. https://doi. org/10.1111/j.1399-­0012.2005.00336.x Waldby, C., & Mitchell, R. (2006). Tissue economies: Blood, organs, and cell lines in late capitalism. Duke University Press. Zeiler, K. (2014). Neither property right nor heroic gift, neither sacrifice nor aporia: The benefit of the theoretical lens of sharing in donation ethics. Medicine, Health Care, and Philosophy, 17(2), 171–181. https://doi.org/10.1007/s11019-­013-­9514-­0

Part IV

Tehran Papers

Chapter 8

The Kidney Transplantation Program in Iran Mitra Mahdavi-Mazdeh, Ellen Sepanian, and Anna Maliwat

8.1 Introduction To have a better perspective of how the transplantation program in Iran developed and has been working, we believe it necessary to have a comprehensive understanding of the demographic indices and healthcare system in the country and how end-­ stage kidney disease (ESKD) in the country has been managed over time. Iran, formerly known as Persia, is in southwestern Asia and part of the Middle East. It covers over 1.7 million km2 with a population of over 84 million, making it the seventeenth largest and nineteenth most populous country in the world. Its economy relies mainly on oil exports as it possesses one of the largest oil and natural gas reservoirs among middle-income countries. The country was a constitutional monarchy until the 1979 Islamic Revolution, which resulted in the establishment of the Islamic Republic of Iran. It has experienced significant periods of economic turbulence due to the eight-year Iran-Iraq War (1980–88), repetitive periods of sanctions, and the freezing of assets overseas. Based on the 2016 census, the median age is 30 years. The government allocated 3.4% of the gross domestic product (GDP) to education and 6% to health, and Iran is ranked among countries with a high Human Developmental Index (HDI) value (0.78; 2019) (Statistical Center of Iran, 2016; Conceição, 2020). M. Mahdavi-Mazdeh (*) Tehran University of Medical Sciences, Tehran, Iran e-mail: [email protected]; [email protected] E. Sepanian Carl von Ossietzky Universität Oldenburg, Oldenburg, Germany Helmholtz-Zentrum für Infektionsforschung (HZI), Braunschweig, Germany e-mail: [email protected] A. Maliwat University of Toronto, Toronto, Canada © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 R. Fan (ed.), Incentives and Disincentives in Organ Donation, Philosophy and Medicine 133, https://doi.org/10.1007/978-3-031-29239-2_8

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8.2 Healthcare System in Iran In Iran, the healthcare budget accounts for 6% of GDP. The Ministry of Health and Medical Education (MOHME) has been the main authority executing different strategies to make health care accessible to all citizens through medical universities in each of Iran’s 31 provinces. Medical universities, under MOHME supervision, are responsible for providing and regulating healthcare management in addition to medical education and research. In Iran, a large country with a limited healthcare budget, a major element in the successful strategy for facilitating national coverage and accessibility to health care was the establishment of the National Health Network in 1983, whereby patients are referred to secondary and tertiary-level hospitals from primary care centers. Successful control of vaccine-preventable diseases by the Immunization Program and significant reduction of maternal and under-five mortality have been some of the achievements of this implemented national network. Subsidized services, such as prenatal care and vaccinations, are also delivered through this network. The Iranian healthcare system is mainly an insurance-based system with four main public health insurance organizations: the Social Security Insurance Organization for those employed in the private sector (36% of the population); Medical Services Insurance Organization for government employees, students, and rural dwellers; Armed Forces Medical Services Insurance Organization for military personnel; and the Relief Committee Health Insurance, a charity-based health insurance body for those who cannot afford to pay any insurance premium. Although the percentage of the population with health insurance increased from 40% in 1994 to nearly 90% in 2010, many believe that the system is still fragmented, and out-of-­ pocket payments are increasing (Davari et al., 2012; Heshmati & Joulaei, 2016). The first hemodialysis center was opened in Tehran in 1975. The prevalence of End-Stage Kidney Disease (ESKD) increased steadily from 10 cases per million people (PMP) in 1991 to more than 470 PMP after 2014. In 1985, in response to the long waiting list for transplantation abroad, the “Renal Transplantation Initiative” was established, and kidney transplantation began in two academic transplant centers in Iran. The government-regulated and -funded living unrelated kidney donation (LUKD) program was approved by the Council of Guardians in 1988. Following the parliament’s failure to ratify the “BDD (Brain Dead Donor) Bill” in 1995, the LUKD initiative “Gift of Altruism/Rewarded Gifting” to any kidney donor was approved by the Board of Ministers in early 1997. The rate of transplantation rose rapidly, from ~11 PMP in prior years to 16 PMP in 1997 and 20 PMP in 2000. Finally, the Brain Death Organ Donation Act was legislated in 2000. After that, a virtual network was developed with 13 Organ Procurement Units (OPUs) and 18 brain-death identification units. All ESKD patients are eligible to receive free health insurance for dialysis and transplantation. Immunosuppressive medications are subsidized by the government and most of the remaining costs are covered by insurance agencies. Government supports live donors with the approved official “gift of altruism” which is fixed

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amount of 10 million Rials or 1 million Tomans in addition to free surgery and primary admission (the term “gift of altruism” here refers to the financial compensation given to the donor for their altruism in donating a kidney). In 2002, the multi-exchange-rate system converted to a single rate. This meant that the value of government financial incentives for living kidney donors which was the fixed amount of 10 million Rials (1 million Tomans), decreased from more than US$ 3500 in the late 1990s to US$ 1300 in 2002, US$ 900 in 2011, and US$ 250 in 2018. The government did not increase the amount of gift of altruism over time to compensate for the decreased value of the state’s currency and increased inflation rate. Promoting BDD after the live donation program (Iranian model) lead to a gradual but significant shift from living donations to BDDs. The living kidney donation share decreased from more than 95% of performed transplants in 2000 to less than 50% in 2015 and after in Iran.

8.3 End-Stage Kidney Disease (ESKD) in Iran Transplantation is the last piece of the complex jigsaw puzzle of medical management for patients with ESKD. Many regulatory, organizational, technological, and educational infrastructures need to be improved before an effective transplantation program can be implemented. Furthermore, as one cornerstone of transplantation is based on the availability of a human organ, public knowledge is another prerequisite for a successful transplantation program. Accordingly, the HDI, as a measure of healthy life, knowledgeability, and citizens’ standard of living, plays a significant role in the implementation of new healthcare programs. When the HDI is higher in a country, even in a middle-income one like Iran, people’s participation in national policy choices and their expectations of the government are more prominent. This will be explained in more detail when we detail how transplantation has evolved. First, we focus on how ESKD, a seemingly unknown disease, changed to one on the priority list of the Ministry of Health and with a well-developed national program accompanied by the innovative Live Kidney Donation (Iranian model) solution. In 1991, ESKD patients on chronic dialysis were ~ 10 per million population (PMP) and were mainly from Tehran (capital of Iran). Based on the national registry, ESKD incidence increased from 14 PMP in 1997 to 50 in 2005 and 62 in 2000, showing that in the early nineties, most patients with ESKD were missed or did not have access to treatment. Furthermore, the leading causes of ESKD changed from unknown in 1995–2002 to hypertension and diabetes mellitus after 2003. The mean age in newly diagnosed ESKD patients increased from 48.5  ±  17.5  years in 1995–1999 to 55.1 ± 16.8 years in 2010–2014 (Aghighi et al., 2009; Heidary Rouchi et al., 2018). In general, a higher rate of case detection, earlier diagnosis, and accurate identification of the leading causes of kidney failure helped reduce the rate whereby chronic kidney disease progressed to ESKD.

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The increased number of nephrologists, from fewer than 25 in 1990 to 100 in 2000 and 200 by 2010, intertwined with the availability of different treatment modalities, an increased number of dialysis centers, and many laboratories all over the country over years, helped diagnose many patients and ensure the appropriate treatment was administered (Mahdavi-Mazdeh, 2012b). Another important piece of the puzzle has been governmental free medical insurance for renal replacement therapy (RRT) for all patients irrespective of age. As the number of patients increased, their voices became louder, which placed pressure on the government to provide facilities for kidney transplantation.

8.3.1 Hemodialysis Hemodialysis started in 1962 in Iran. At that time, it was used, experimentally, only for a few acute renal failure patients (Nikkhou, 1975) and it took a long time for it to become a treatment for ESKD. It was not until 1974 that the “Dialysis Center” affiliated with the Ministry of Health was established to set a national program for chronic dialysis and oversee its performance and budget and the first hemodialysis center was opened in Tehran in 1975. Afterward, due to its increased responsibilities, active role in the ESKD registry, and management of transplantation in addition to dialysis in the following years, this center was renamed the “Dialysis and Organ Transplantation Center” in 2000. The prevalence of ESKD increased steadily to 100 PMP in 1995, 238 in 2000, and more than 470 PMP after 2014. This skyrocketing rise paralleled the increasing number of nephrologists all over the country, the numbers of dialysis machines and dialysis centers, and also the availability of transplantation. The number of dialysis centers increased from fewer than 70  in 1987, when transplantation was in its infancy, to more than 200  in 2000, and 300  in 2005. The prevalence of ESKD increased by a factor of 2.3 between 1995 and 2000. It increased, on average, about 15% annually in the period 1995–2004 compared with 5.3% in the period 2005–2014 (Heidary Rouchi et al., 2018). Regarding the quality of treatment, however, 50% of patients could not receive thrice-weekly standard dialysis until 2000. It took 5 years (from 2000 to 2005) to lower this rate to 40%, which emphasizes how enormous efforts and budgets are needed to solve problems at operational levels, especially in a large country with an average population density of 50 people/km2 (range: 10–200). Providing dialysis facilities and services in areas with lower population density is more costly. These facts make the importance of transplantation clearer. It was not only the treatment of choice for kidney failure but would also free up more dialysis facilities for other patients in need.

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8.4 How Did Kidney Transplantation Start in Iran? Transplantation in Iran experienced an inverted funnel approach. In its forty-year history, the first focus was on strategies to increase the live donor pool, which was later replaced by strategies to increase the brain-dead donor (BDD) pool, an approach unique to Iran (Table 8.1). Although the first transplant was performed in 1967, there was no national transplant program for the next 20 years. Up until 1985, only approximately 100 kidney transplants took place. Since 1980, travel and medical expenses for transplantation abroad were covered for patients on dialysis who could get an acceptance letter from a transplant center. The allocated budget was through governmental funds for the recipient and their related donors. In the period 1980–1985, 400 patients traveled abroad (mainly to Europe) and received transplants. In 1985, in response to the long waiting list for transplantation abroad, the “Renal Transplantation Initiative” was established, and kidney transplantation started in two academic transplant centers in Iran. In the following 2  years, 274 living related transplants were performed in the country. However, many patients who desired a transplant did not have suitable related donors, and their quality of life was very poor on less than thrice-weekly standard dialysis and/or acetate-based dialysis (until 2000, bicarbonate-based hemodialysis was not available). The first wife-to-husband transplant (i.e., non-biologically related donation) was carried out in 1987. Improved patient outcomes after transplantation, loud campaigns in support of patients, the economic squeeze during the Iran-Iraq war in addition to sanctions, and the potential of transplantation to save costs for the limited health budget, together persuaded the government to plan a regulated and funded living unrelated kidney donation (LUKD) program in 1988. The live donations taking place were mainly from related donors, but less than 30% of those on the waiting list had a related potential donor, so the demand could not easily be met (Ghods & Savaj, 2006; Zahedi et al., 2009). Table 8.1  Legal and policy landmarks related to kidney transplantation in Iran 1967 1975 1985 1988 1989 1995 1997 1999 2000 2014– 2015

First kidney transplantation performed in Iran First dialysis center for chronic hemodialysis opens in Iran Official establishment of kidney transplantation initiative; transplantation starts in two academic transplantation centers Government-regulated and funded LURD program approved by the Council of Guardians First Fatwa (Islamic edict) recognizing BDD Brain Death Organ Donation Act rejected by parliament Gift of Altruism law approved by Board of Ministers Elimination of waiting list announced by professionals Brain Death Organ Donation Act passed by parliament BDD rate overtakes live donation rate and continues to rise

Data source: Ghods & Savaj, 2006; Zahedi et al., 2009

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In response to this problem, professionals had an eye on BDD, although its establishment was somewhat more challenging. A consensus among religious leaders to issue fatwas (Islamic edicts) recognizing the concept of brain death from a religious standpoint and an enabling law from the parliament were both prerequisite steps. Various religions and ethnicities differ in their values and beliefs and these differences must be taken into consideration when health authorities try to implement action plans on sensitive issues like organ donation. Although 99% of the population are Muslims, of whom more than 90% belong to the Shia sect, they can follow different religious leaders and their beliefs are not homogenous. There are also many ethnicities in Iran. Persians, Kurds, and Azeris are three of the main Irani groups, Mazandaranis and Gilaks are also significant, and there are many other smaller ethnic groups. The first Shia fatwa was issued in 1989 by the late Imam Khomeini, the leader of Iran’s revolution, and more fatwas recognizing BDD were issued later by other religious leaders in different sects. However, the “BDD bill” was not ratified by the parliament in 1995 because disagreements about it had not been resolved. Therefore, the Ministry of Health had to explore other options to solve the organ shortage for kidney transplants, the long waiting list of patients for transplantation, and the limited number of dialysis centers across the country. The LUKD initiative seemed a reasonable approach and the Board of Ministers approved “Gift of Altruism”/ Rewarded Gifting” for any kidney donor in early 1997. Accordingly, the rate of kidney transplantation rose rapidly, from ~11 PMP in prior years to 16 PMP in 1997 and 20 PMP in 2000. Since then, organ donations in Iran have steadily increased, significantly alleviating the organ shortage (Mahdavi-­ Mazdeh, 2012a; International Registry in Organ Donation and Transplantation, 2019; Simforoosh et al., 2019) (Fig. 8.1). Three indispensable steps to the “paid live kidney transplant program” in Iran, known as “the Iranian model,” have been developed: 1. A monetary “Gift of Altruism” to any kidney donor for their gift of life as a symbol of society’s appreciation, funded by the government;

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2. A requirement that the recipient and donor have the same citizenship, which prevents patients from other countries taking advantage of the Iranian model. This was also crucial in protecting Afghan refugees in Iran from being coerced to donate their kidneys; 3. In addition to informed consent from the donor, a mandatory signed approval form from the donor’s next of kin. In this way, the Iranian system, which stands apart from other organ donation systems because of its legal monetary incentives, led to the elimination of the transplant waiting list by 1999 (Mahdavi-Mazdeh et al., 2008; Mahdavi-Mazdeh, 2012a; Feizi & Moeindarbari, 2019). The incidence of ESKD, which was ~14 PMP in 1997, increased to no more than 50 PMP in 2000, meaning the increase in the number of live donors could readily fulfill the country’s need and the waiting list was easily eliminated (Aghighi et al., 2009). In the following 10 years, the incidence of ESKD continued to rise, as was the case in most developing countries with a well-established RRT program, reaching 78 PMP in 2014. However, the BDD program then became available and gradually expanded all over the country, and the program increased the pool of donors. By having both living and brain-dead kidney donation programs, the supply could keep pace with the demand despite the increase in incidence of the disease, whereas neither of them alone would have been sufficient. Currently, the waiting time to get a kidney in Iran is less than 2 years, much less than in most Western countries (Iran Kidney Foundation, 2019). Any transplant candidate with a nephrologist’s report who wants to have a live unrelated donor can register free of charge with the Iranian Patients’ Kidney Foundation (PKF), founded in 1978 with more than 130 branches all over the country. The primary evaluation for all potential donors consists of some routine lab tests, imaging, and a physical examination in any of PKFs’ clinics. After obtaining informed consent and completing the normal primary lab tests, a potential blood-­ group-­matched donor is introduced directly to the potential recipient to meet in person. If the outcome of this meeting is successful, a nephrologist then carries out a further evaluation of the donor and recipient. (Mahdavi-Mazdeh et  al., 2008; Mahdavi-Mazdeh, 2012a; Fallahzadeh et al., 2013).

8.5 Brain-Dead Donation (BDD) Program Despite the rejection of the Brain Death Organ Donation bill in 1995, professionals continued their efforts to provide facts and information for religious leaders and the public. Considering the importance of transplantation from BDDs, the proposal was laid before the next parliament; this time, it passed, and the Act was legislated in 2000. Almost 7000 renal transplantations from living unrelated donors had been performed until the legislation of BDD.  This period paved the way for BDD by developing the necessary infrastructure. The number of kidney transplant centers

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increased from 2 in 1985 to 23 in 2001, along with many university-trained surgeons, transplant physicians, and nurses, plus immunology laboratory experts, who are the cornerstone of the program’s execution. Important features of the BDD program in Iran are: 1. To declare a legal diagnosis of brain death, the approval of five physicians (internist, neurologist, neurosurgeon, anesthetist, and a specialist in forensic medicine) appointed by the Minister of Health in the university hospitals is necessary. The main reason for this has been to establish public trust because the brain-­ death concept has been more controversial than cardiac death (Mahdavi-Mazdeh et al., 2007; Mahdavi-Mazdeh, 2012a). 2. Transfer of potential BDDs to the ICUs of Organ Procurement Units (OPUs) in academic hospitals because of inadequate facilities to handle the entire organ procurement procedure in primary hospitals. Convincing the families of brain-dead potential donors and increasing dialysis patients’ awareness of the new opportunity for obtaining a kidney (considering the different perspective regarding an organ from a dead person being transplanted to a recipient’s body) were some of the social obstacles that health authorities had to overcome to help the BDD program, in its early years, compete with a well-known live donation program. After the legislation of the BDD Act, a virtual network was developed with 13 Organ Procurement Units (OPUs) and 18 brain-death identification units. A potential BDD is actively located by the Brain-Death Identification (BDI) team by calling hospitals with ICUs, or passively by a call from ICU staff to the BDI unit. All ICUs are divided among OPUs or BDI units. When the BDI team is informed about a potential brain death in any ICU, they go to that hospital, take responsibility for the potential BDD, and approach their family for donation consent. The primary medical tests for the diagnosis of brain death are performed with the cooperation of primary physicians and the BDI team. Tests include clinical examinations for brain reflexes, EEG (electroencephalogram), or sometimes blood flow tests (cerebral angiogram) or other imaging methods. The potential donor may exhibit some spinal reflexes even after brain death, which is sometimes misleading for family members and even the healthcare team. The OPU team is responsible for following up with the Ministry of Health waiting list team, donor management specialists, and organ recovery surgery teams. The MOH waiting list team is responsible for introducing the potential recipients, following up on the issue through recipient coordinators, and ordering blood test matching through referral laboratories where the blood samples of recipients are stored. After the primary tests, verbal consultation with specialists, and most importantly, a satisfactory EEG, the identified BDD is transferred to an ICU by the OPU. After admission, hemodynamic status is monitored, as are measurements of plasma biochemical parameters. More neurologic tests and a second EEG are performed to confirm the diagnosis of brain death. Meanwhile, the family gives their written approval at the OPU.  Afterward, the donor will be transferred to the

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operating room where organ procurement takes place and the organs transferred to operating rooms for different recipients (Davari et al., 2012).

8.6 Financial Aspects of the Iranian Model As mentioned before, all ESKD patients are categorized as “Patients with Special Diseases” and are eligible to receive free health insurance. The expenses associated with surgery, induction treatments and hospital admission for transplantation are paid by the government and recipients. Immunosuppressive medications are subsidized by the government and most of the remaining costs are covered by insurance agencies. As Fig. 8.2 shows, donors receive the approved official “gift of altruism,” of one million Tomans (10 million Rials) in addition to the free surgery and primary admission supported by the government. As mentioned earlier, in 2002, the multi-­ exchange-­rate system converted to one rate, leading to a sharp decrease in the dollar value of government financial incentives for living kidney donors over time. The main reason that the MOH did not increase the amount of “gift of altruism” in response to increased inflation rate and decreased value of the currency, was the need to manage the finite healthcare budget and implement BDD program. Following the BDD Act, support for living donations was intentionally did not continue in favor of BDD.  Most professionals believed that unrelated living donation was a temporary solution to the problems of the pre-BDD era and, with the success of the BDD program, it would not be needed anymore. From that point, the recipient’s direct participation in compensation started and gradually became more prominent.

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Fig. 8.3  Trend of Kidney Transplantation in Iran after Brain Death Donation Act (2000). (Data source: International Registry in Organ Donation and Transplantation, 2019)

Currently, potential donors and recipients negotiate face-to-face at a PKF-­ provided space and under the supervision of the PKF, without the involvement of any broker (Mahdavi-Mazdeh, 2012a; Fallahzadeh et al., 2013; Feizi & Moeindarbari, 2019). Direct payment from recipient to donor caused many to look at the live donation process as a sale or market transaction. This direct participation is still in place; however, BDD sped up and the rate of transplantation from live donors continuously decreased. As Fig. 8.3 shows, the kidney donation rate in Iran in 2000 was 0 PMP from BDDs and 20 PMP from living donors (LD), respectively. Although the absolute number of kidney transplants increased from almost 1400  in 2000 to ~2500 in 2015 and after, the share of living donations decreased significantly due to increasing kidney transplants from BDDs (decreasing from more than 95% in 2000 to less than 50% after 2015).

8.7 Conclusion Legal, compensated, living-unrelated donation (Iranian model), which was adopted in Iran in 1988, successfully saved many lives and eliminated the waiting list after 10  years. It paved the way for implementation of the BDD program, which was legislated for in 2000 by expanding the knowledge and necessary scientific expertise all over the country. The BDD program was successful, steadily decreasing the live donation rate and eventually surpassing it. From 2015 onward, the proportion of kidneys transplanted from BD donors was higher than that from live donors. If the Iranian model of living donation program could cover the financial incentives to live donors just by the government without direct involvement of recipients, no ethical concerns would arise. However, the MOH had to allocate some budget for implementing the BDD program after it was passed into law. Therefore, because of the decrease in the value of the local currency, increase of inflation rate, the value of the fixed amount of “gift of altruism” decreased over time, and due to national

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economic and budgetary difficulties, recipients were required to take part in the direct compensation of donors. The case of Iran is unique in a number of ways: in particular, the effects of the Iran-Iraq War, international sanctions, and other factors have placed enormous pressure on every aspect of the country’s government and infrastructure, health included. In response to the twin pressures of tight budgets and increased rates of ESKD, Iran developed its unique regulated LURD program with financial incentives for non-­ related donors, which in turn paved the way for the implementation and promotion of the current BDD program free of financial incentives.

References Aghighi, M., Mahdavi-Mazdeh, M., Zamyadi, M., Heidary Rouchi, A., Rajolani, H., & Nourozi, S. (2009). Changing epidemiology of end-stage renal disease in last 10 years in Iran. Iranian Journal of Kidney Diseases, 3(4), 192–196. Conceição, P. (2020). Human development report 2020; the next frontier human development and the Anthropocene (pp. 1–7). United Nations Development Programme. Davari, M., Haycox, A., & Walley, T. (2012). The Iranian health insurance system; past experiences, present challenges and future strategies. Iranian Journal of Public Health, 41(9), 1–9. Fallahzadeh, M., Jafari, L., Roozbeh, J., Singh, N., Shokouh-Amiri, H., Behzadi, S., et al. (2013). Comparison of health status and quality of life of related versus paid unrelated living kidney donors. American Journal of Transplantation, 13(12), 3210–3214. https://doi.org/10.1111/ ajt.12488 Feizi, M., & Moeindarbari, T. (2019). Characteristics of kidney donors and recipients in Iranian kidney market: Evidence from Mashhad. Clinical Transplantation, 33(10), e13650. https://doi. org/10.1111/ctr.13650 Ghods, A., & Savaj, S. (2006). Iranian model of paid and regulated living-unrelated kidney donation. Clinical Journal of the American Society of Nephrology, 1(6), 1136–1145. https://doi. org/10.2215/CJN.00700206 Heidary Rouchi, A., Mansournia, M., Aghighi, M., & Mahdavi-Mazdeh, M. (2018). Survival probabilities of end stage renal disease patients on renal replacement therapy in Iran. Nephrology (Carlton, Vic.), 23(4), 331–337. https://doi.org/10.1111/nep.13021 Heshmati, B., & Joulaei, H. (2016). Iran’s health-care system in transition. The Lancet (British Edition), 387(10013), 29–30. https://doi.org/10.1016/S0140-­6736(15)01297-­0 International Registry in Organ Donation and Transplantation. (2019). Database of Iran. Retrieved July 2, 2022, from https://www.irodat.org/?p=database&c=IR&year Iran Kidney Foundation. (2019). How long should you wait to be transplanted? Retrieved May 1, 2021, from http://www.irankf.com/news/426 Mahdavi-Mazdeh, M. (2012a). The Iranian model of living renal transplantation. Kidney International, 82(6), 627–634. https://doi.org/10.1038/ki.2012.219 Mahdavi-Mazdeh, M. (2012b). Share of females in nephrology of Iran. Transplantation, 94(10S), 265. Mahdavi-Mazdeh, M., Heidary Rouchi, A., Norouzi, S., Aghighi, M., Rajolani, H., & Ahrabi, S. (2007). Renal replacement therapy in Iran. Urology Journal, 4(2), 66–70. Mahdavi-Mazdeh, M., Rouchi, A., Rajolani, H., Norouzi, S., Aghighi, M., & Ahrabi, S. (2008). Transplantation registry in Iran. Transplantation Proceedings, 40(1), 126–128. https://doi. org/10.1016/j.transproceed.2007.11.010 Nikkhou, M. (1975). Anuria caused by mercury poisoning (apropos of 15 cases) [In French]. Acta Medica Iranica, 18(3–4), 195–204.

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Simforoosh, N., Basiri, A., Tabibi, A., & Nadjafi-Semnani, M. (2019). Living unrelated kidney transplantation: Does it prevent deceased-donor kidney transplantation growth? Experimental and Clinical Transplantation, 17(Suppl 1), 250–253. https://doi.org/10.6002/ect. MESOT2018.P110 Statistical Center of Iran. (2016). Selected findings of the 2016 national population and housing census, Retrieved July 29, 2022, from https://www.amar.org.ir/english/Latest-­Releases-­Page/ ID/5689/Selected-­Findings-­of-­the-­2016-­National-­Population-­and-­Housing-­Census Zahedi, F., Fazel, I., & Larijani, B. (2009). An overview of organ transplantation in Iran over three decades: With special focus on renal transplantation. Iranian Journal of Public Health, 38(Suppl 1), 138–149.

Chapter 9

Interview Findings in Relation to Organ Donation in Iran Mitra Mahdavi-Mazdeh and Ellen Sepanian

9.1 Introduction As explained in the previous chapter, it took 15 years for the brain-dead donation (BDD) program to become legalized in Iran and the transplantation program started with legal live donation. Iranians are therefore unique in their experience with incentivized live donation, so their attitudes to the impact of different kinds of incentives (honorary, compensationalist, familist) in increasing the rate of BDDs may shed more light on the ethical concerns associated with organ donation. Furthermore, because of the Islamic religion and eastern culture, their points of view on brain death and respect for the body after death represent a valuable component of this cross-cultural international project.

9.2 Objective and Methods 9.2.1 Objectives The main objective of our research project in Iran has been to study the attitudes toward monetary incentives for the families of brain-dead (BD) donors and the potential role of such incentives in raising the BDD rate. The interview questions M. Mahdavi-Mazdeh (*) Tehran University of Medical Sciences, Tehran, Iran e-mail: [email protected]; [email protected] E. Sepanian Carl von Ossietzky Universität Oldenburg, Oldenburg, Germany Helmholtz- Zentrum für Infektionsforschung (HZI), Braunschweig, Germany e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 R. Fan (ed.), Incentives and Disincentives in Organ Donation, Philosophy and Medicine 133, https://doi.org/10.1007/978-3-031-29239-2_9

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were derived from the research aim, literature review, and the researchers’ experience in organ transplantation.

9.2.2 Methods The structured questions were designed to focus on what respondents think and feel about kidney donation from living donors and organ donation after brain death and if they had past experiences with organ donation. What did they consider an appropriate way of expressing appreciation for BDDs, and which kind of incentive would it be ethical or fair to use to increase donation rates, honorary appreciation or monetary compensation or any combinations? Does the potential exist to adapt the Iranian financial incentive model, which increased live donations, to BDD? The unique feature of this study’s interviewees is that, as Iranians, they are familiar with Iran’s paid unrelated kidney donation (Iranian model) program. The study design included semi-structured in-person interviews. Information about the study was explained to the participants. Eighteen interviews were held, in Farsi and using open-ended questions. Participants from different groups were chosen to cover different opinions based on their exposure to transplantation to get perspectives on their various situations and see if they could be generalized to the same group. They had the following characteristics: • Three adult kidney transplant recipients, one from a live donor, one from a BD donor both with functioning kidneys, and one from a live donor but currently on chronic dialysis • Three family members: One each for a BD donor, a living donor, and a recipient • Five senior subject matter experts with expertise in transplantation in Iran (a transplant coordinator, a transplant nurse, a transplant physician, Two senior administrators one from the Kidney Foundation, and one from the Ministry of Health • One expert policymaker and ethicist in the field of transplantation • Four people as representatives of the general population • One religious scholar • One live donor. We recruited the interviewees by telephone calls, and they chose the location for the interview. All were in Tehran (the country’s capital) because of the ease of conducting the interviews. Each interview lasted 30–60  min and all recorded interviews were transcribed. One participant chose to send written answers instead of engaging in a face-to-face interview. All recorded interviews were transcribed and translated by the interviewer, a native Farsi speaker. The other coauthor then checked each translation. Questions were categorized into three main fields: 1. General attitude toward organ donation from BD or live donors and the monetary incentive for an unrelated kidney donor;

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2. Why may families refuse to consent to donating the organs of their brain-dead loved ones? 3. How to promote BDD? Honorary appreciation, familist incentives, and/or compensationalist incentives

9.3 Main Findings 9.3.1 Attitudes Toward Brain-Dead Donation (BDD) All interviewees believed that deceased organ donation is an excellent source of organs for many patients awaiting transplants, as each BD donor can save many lives. The main supporting reasons that they mentioned were: 1. They are the best available resource, and it is better to let them save lives rather than go to waste; 2. Islamic belief plays a vital role in peoples’ attitudes in favor of donation, and none of the interviewees saw religious beliefs, at least theoretically, as an obstacle to consent to donation. They mentioned that Muslim Iranian society views it as compassion for others in need, a demonstration of altruism. They quoted many religious recommendations regarding giving behavior and that when someone saves a life, it is as if they had saved all humanity. Religious instruction often encourages everybody to be kind and take action to help those in need. One believed in the chemists’ expression—“like dissolves like.” She thought people could learn from the soil and seeing what it does. Dirt claims the bodies after death and later offers them to the seeds as nutrients, giving the life back to the growing grain. In the same way, the divine treasures laid down in everybody can become alive in other humans’ bodies after death, and the gift-of-life can be offered to others in need. 3. It could be a great help to grieving families. Such families might feel that their dead loved one is still alive in other people, which could bring them a measure of relief and consolation. One BD donor’s family told us that it seemed to them that their beloved is still alive, and they do not believe he has actually died. 4. One of the recipients mentioned the importance of promoting the BDD program to the government. She reasoned that because of the increasing number of patients with kidney failure, the high cost of dialysis, and the low availability of dialysis facilities, the BDD program should be among the high-priority health programs for Iran’s Ministry of Health. 5. One of the nurses believed that increasing the BDD rate is the ultimate way to decrease the need for live kidney donors in Iran. She proudly told us that just 10 of the kidney transplantations performed in her hospital in the previous year were from live donors, compared to 95 from BD donors.

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This agrees with national data that shows that the proportion of kidneys transplanted from live donors decreased in parallel with the increase in BDD transplantations. Twenty-two PMP live transplants in 2010 fell to 10 PMP in 2019, while transplants from BDDs increased from 8 to 18 PMP in the same period (see Chap. 8, Fig. 8.3). However, developing the necessary infrastructure, increasing public education, and paying proper attention to donor suitability criteria were considered mandatory steps for a successful BDD program. They also emphasized that the emotional needs of BD donors’ families should be appropriately handled.

9.3.2 Attitudes Toward Living Kidney Donation We found some variations among interviewees’ points of view on this topic. The perspective of a patient on dialysis can differ from that of a healthy person. Sometimes, those needing a transplant may convince themselves that getting a kidney from an unrelated live donor and compensating them financially is ethical. Because there are not enough BDDs, or that if they have to wait a long time for a BDD, the odds of a successful transplant may not be as good. There may also be a feeling that if they decline to go for a kidney from an unrelated living donor due to ethical concerns, someone else will do so. Such lines of reasoning lead them to conclude that there may be no other choice except a kidney from an unrelated living donor. While one of the recipients appreciated the high number of BDDs and believed that it was worth waiting a bit longer to get a kidney from that source, another interviewee blamed the system for not having enough BDDs, which pushed them to look for a live donor because they did not want to remain on dialysis any longer. One of the physicians described his memory of a scenario that he brought up in a seminar to highlight how a person’s needs may change their perspective. He asked the professionals how long they would be ready to wait on dialysis before considering the option of transplantation from a living donor, and if they had a choice, whose kidney would they choose: their child’s or an unrelated donor’s. Although he disagreed with compensated unrelated kidney donation, he admitted that most participants in the seminar, including himself, would go for a live donor as soon as they could if they were in need. Similarly, the recipients emphasized that a suffering patient’s perspective is very different from that of a healthy one. One of the recipients, whose transplant from a living donor had eventually failed and was on dialysis, told us that even though she had been admitted to hospital several times due to complications with the transplant itself, the procedure had been very valuable for her. She described those years with a functioning kidney as the best years of her life. As a person who got her health back for a long time by receiving a kidney from a live donor, she believed Iran’s legal live donation program (Iranian model) was acceptable and adequately solved organ shortage problems. However, it might cause several issues for the donor (such as pain or the potential for health issues in the long term).

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The waiting time for kidney transplantation from a living donor is very short in Iran, so many expect a similarly fast process for BDDs. Most people cannot believe that many patients in Western countries have to wait more than 3–4 years to get a transplant, if they do not die while waiting. The recipients from living donors shared their feelings regarding the organs they would live with. One of them explained that she needed time to cope with the fact that she would live with another person’s organ in her own body. On several occasions, she met the donor to do the medical tests and visit physicians, which helped her have enough time to gradually get acquainted with the donor and become ready to accept having another person’s organ inside her. This is something that cannot, of course, be provided in the case of a BDD. Another recipient told us that he could not live with an organ from a dead body, and would never register for BDD. Such an attitude may be due to cultural or religious beliefs. On the other hand, the recipient who got her kidney from a BDD strongly believed that she could not have forgiven herself if she had received a kidney from a living donor. It might make her feel indebted and ashamed, and interestingly, she did not even register to get a kidney from a living donor. One participant’s concern was the short-term and long-term safety of the procedure and the issue of the living donor losing an organ. He argued that available follow-­up studies on living donors only go back 20 years, which may not be enough, and extensive group follow-ups over 30 years are extremely rare. Although uncommon, anesthesia, surgery, and other procedures do carry the risk of serious side effects, or even death. No surgical procedure is one hundred percent safe. He warned us: “Someone who donated at the age of 30 might not have medical issues until 20 years later, at 50. But what about in their 60 s? Organ donation cannot be free of potential health problems and consequences. How much risk should be acceptable? In my opinion, the answer is none.” He firmly believed that live donation should be forgotten: it belonged to an era when the country was handling so many problems, including lack of dialysis facilities due to the 8-year Iran-Iraq war, sanctions imposed after the revolution, and the absence of the Brain Death Donation Act. Another non-recipient participant felt negatively toward any living donation, even from a relative. She thought recipients could become emotionally and mentally overwhelmed after the procedure due to a sense of regret and guilt, which in her opinion would negatively impact the graft survival. These ethical gray zones in organ donation may require the advice of ethicists to help health professionals find solutions to protect both donor and recipient as much as possible. There are two main requirements for living unrelated donation law in Iran. The first is a notarized letter of consent from the donor and their next of kin, which stops young men from making such a decision emotionally and by themselves. A married person cannot donate without the approval of their spouse. This means that the decision involves a second opinion from the family of a potential donor. The second requirement is that potential donors must be above 18, and their mental health is evaluated during the psychological consultation sessions. In this way, generally, any potential family pressure can be reduced.

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9.3.3 Attitude Toward Compensationalist Incentives for Unrelated Kidney Donation (Iranian Model) All interviewees agreed that the organ is priceless and precious, the donor‘s act is deserving of respect, and donors deserve to receive compensation for the damage and loss suffered in restoring another human being’s health. However, to have the recipient offer money directly to the donor is not consistent with Iranian culture. It changes the process from an admirable decision and journey of life from donor to recipient to a marketplace where organs are treated as commodities. The most problematic aspect of the Iranian model live donation initiative has been the direct transaction between recipient and donor, which other systems should beware of and not imitate. All participants believed in some support for donors but emphasized that any support for donors’ health or financial problems (compensation for lost wages and other needs) should be through the government or under its supervision. There should be no connection between the donor and the recipient. Most emphasized that donors and recipients should remain anonymous to each other and that there should be no direct financial interaction between them. Some believed that society should show its appreciation for donors with lifelong monetary compensation; they felt a lump sum payment without further support later was not a reasonable approach, and the government should implement long-term support as a form of continued care for donors. Most believed that problems started when the direct connection between donor and recipient was created. Some believed that if government support could continue and the gift of altruism could increase in parallel with inflation and changes in the exchange rate, we may not have faced this problem regarding attitudes toward live donation. This topic has been discussed in Chaps. 8 and 10, but in brief, when the exchange rate changed in the early 2000s, the value of the gift of altruism, which was fixed (ten million Rials), declined, and recipients began to participate in directly compensating their donors. Recipients from living donors believed living kidney donation is reasonable for the following reasons: the procedure does not put donors’ lives at risk but could positively impact the lives of others, and financial problems of a low- or middle-­ income donor family can be solved at least partially by the monetary compensation. On one side, there are people with money problems or high amounts of debt and or limited job opportunities in the country, and on the other side, some have been desperately waiting on a long waiting list and there is a limited number of BDDs. This strategy solved the organ shortage problem in Iran. Although they appreciated the policies favoring expanding deceased donation, they preferred to receive a transplant from a live donor. In their opinion, seeing both sides of the situation, the program has been successful and helpful for both recipients and donors. It was suggested that it would be ideal if a fundraising system were created to provide the necessary fund for monetary compensation by the recipient, the government, NGOs, and insurance agencies. The participation of all stakeholders in

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supporting live donation would help the process flow more smoothly, and both sides would benefit. Recipients, who often face difficulties working full time due to their disease and in the aftermath of a transplant, would find their financial responsibility to the donor limited. The government could re-allocate part of the unutilized dialysis budget to compensation/incentive packages for donors. Different forms of relief for donors or their families or compensation due to the potential risks of surgery—injury and temporary loss of work capacity—are necessary. This would solve some of the donors’ problems while also saving the lives of those in need of a transplant. In this way, recipients would not be directly involved in the process, and the negative impact of the direct donor-recipient interaction would be prevented. Most believed no problems would occur if donors’ financial support became indirect. Social stigma was a second issue that several participants brought up. Iranians are culturally used to doing good deeds without any financial gain, and receiving any monetary compensation, especially when it is direct, may cause social stigma for donors. Unfortunately, the public is not aware of the sophisticated kidney donation process and that the government does not cover the indirect costs of the donation. The primary governmental medical insurance coverage is just for medical admissions, and compensation for lost wages due to kidney donation is not covered by either public or private insurance agencies. The donor must stay at home to completely recover and cannot work for a while. Furthermore, having made a kidney donation can have a potential negative impact on future job opportunities. The reason for such a misunderstanding is the lack of public knowledge and the fact that the direct transaction between recipient and donor, even under the supervision of the Patient Kidney Foundation, gives the donation the appearance of a market transaction. One interviewee said, “We are taught during our life not to expect others to compensate us for our kindness; God sees us and reciprocates the good deed at an appropriate time. However, when some monetary incentive for such a favor is provided, society needs an explanation from professionals to clarify the situation and why such an incentive has to be paid.” It damages the reputations of living donors in a judgmental society like Iran. The donor may face a moral conflict because of accepting financial reward for a valuable deed, which, based on Iranian culture, should be an act of pure compassion. Another concern was that poor patients could not compete with wealthy patients to receive organs, which would be unfair. However, looking at research studies in Iran, this theoretical threat in the Iranian model has not been a problem. The main reason is the same-citizenship principle, which prevents patients from wealthy countries from considering Iran as a destination to travel to and get a transplant (Ghods & Savaj, 2006; Mahdavi-Mazdeh, 2012). The live donor interviewee also agreed that donors do not like to reveal their donation history and expose themselves to other people’s judgment. Their valuable deed favors the recipient and society, but there is the potential for social stigma because of the attached financial compensation, which may provoke negative feelings toward the donor.

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Indirect pressure from family members was the third issue raised. Some believed monetary incentives might put a person under pressure to donate a kidney to meet family members’ expectations and solve a family’s financial problems. Introducing monetary incentives can cause poor people to consider kidney donations a quick way to make money when their families are struggling economically. One said: “If there is a drug addict in the family, every family member wants to save the addicted member… Someone who started a family at a young age or was unemployed feels that he should do something for their family to help them live more comfortably.” Although some believed monetary incentives represented reinforcement of a good deed, others thought such incentives were the main reason for those who choose to donate their kidneys. Donation as a purely altruistic act only exists in related donations to first-degree relatives. One participant even criticized “Emotionally Related Donation” in Western countries and viewed it as a dressed-up version of unrelated donation. He could not easily accept that a friend could be so emotionally touched that they would want to help another friend without being compensated for their loss of income and other items by the recipient or the government. There could be a hidden potential for monetary exchange in different formats, like gifts. It is also not easy to be sure that gifts, before or after donation, are ethical. It can be a symbol of appreciation, but it may also have a persuasive effect on the decision to donate. The definition of what would constitute a “major” gift depends on the culture of the donor or recipient, their economic status, and the country where they live. It needs to be defined by a consensus of experts based on shared values and socioeconomic status. Kidney donation is a good deed and valuable for society, and we all know that, contrary to our wishes, financial constraints do exist. Each country should determine and update organ donation incentives according to local conditions and the changes occurring in its society. Incentives need not be similar in different countries, or even in different periods within a country. Today’s needs are different from those of 10  years ago, and they will likewise be different in 10  years’ time. Accordingly, something that was an attractive incentive in the past may not be so any more. Participants stated that the government has a crucial role in supervising the program, and policymakers such as the Ministry of Health, insurance companies, and medical councils must adopt strict rules. These are mandatory prerequisites to prevent illegal organ donations. The interviewees also mentioned two indirect incentives of the Iranian model program: prioritization on the waiting list for transplantation if they face organ failure in future and exemption from military service if they are in the age group of mandatory military service. However, those who work in the field told us they had not found them as a motive based on their experience.

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9.3.4 Attitudes Toward Incentives for BDD 9.3.4.1 Honorary Appreciation All interviewees unanimously agreed that BDD families deserve awards or recognition because they overcame their emotions in a traumatic situation, considered clearly, and decided to donate under stressful conditions. They were willing to wait while the sometimes long donation process played out, which interfered with funeral preparations and other rituals. The idea of the body of their loved one being disfigured by surgery and organ removal would also be upsetting. The interviewees believed that any expression of appreciation for them by society in general would also help publicize brain death and organ donation and how valuable it is. The respondents believed that public appreciation is quite similar all over the world. Any creative way of honoring donors, especially measures to perpetuate the memory of their sacrifice, is valuable and should be implemented. The leading suggestions were as follows: • Naming of some school buildings, memorial monuments • Allocating a designated plot in Behesht-e Zahra (public cemetery) for BD donors1 • Inscribing appropriate messages on their tombstones, such as • This individual was a generous donor of life to those in need • Substitution of “date of death” with “date of giving the gift of life to others” • Putting photographs of donors and recipients on year books, billboards, and postcards • Mentioning donors’ names in religious and social bulletins • Holding public “donation celebrations” and inviting donor families, to honor their decision to agree to the donation and to commemorate the donors. Creating an encouraging atmosphere would be beneficial to increasing public awareness. Families of donors can share their conflicting feelings and emotions from when they had to make such a major decision in a short period of time. It can help everybody understand the concept of brain death better and make “organ donation after death” a part of our culture. • Presenting flags of hope, medals, or certificates of honor to donor families • The presentation of organ outcome letters was considered very valuable by several participants. They could be provided without revealing recipients‘information to respect their privacy and prevent any danger of misuse. A general template could be used: • “Your beloved donor’s organs have saved X recipients.” • “The child with a transplanted kidney from your beloved donor can now go to school and ….”

 There is such a plot for artists and well-known writers (interviewer)

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Interviewees believed that Iranian society honors altruism and respects those who engage in such acts. Acknowledging the action brings pride and peace to donor families and motivates the public. An outcome letter seemed to most participants the best way to show families they are appreciated, and would help them feel proud and accept their loss more peacefully. Those working in transplantation told us how keen donor families were on finding out what happened to donated organs. How significant was the impact of their decision on other peoples’ lives? The BD donor family member said, “I would like to have an outcome letter and know what happened to the organs. I do not want to disturb recipients’ privacy by knowing their identities. But I would be more than happy to know how many recipients have been saved.” Many emphasized that expressing appreciation for the actions of BD donors’ families could be a crucial factor for behavior change in society and make it a routine duty like blood donation. Honorary appreciation as a means of effective public education highlights the individual’s role in solving a country’s problems. 9.3.4.2 Compensationalist Incentives Although all believed in the necessity of promoting BDD widely as the best substitute for live donation, the issue of providing monetary incentives was more controversial and unclear. According to Iranian experience with compensational incentives for living donations, all participants except one (who was a physician and transplant ethicist) believed that it is better to keep our distance from paying cash and were firmly against any form of financial incentives. Some looked at it as a contaminating opinion. They believed that problems are inevitable whenever money is brought into such a process, starting and maintaining a vicious cycle. Many reasons were cited: • Monetary incentives require annual updates because of inflation. The live donation program in Iran started with the “gift of altruism” paid by the government. However, despite inflation and many other factors, the government’s share did not change. Recipients therefore began paying the “missing” part of the compensation, adding a serious ethical complication to the process. Determining the amount of cash and how it is paid is also very complicated. A certain amount of money may look reasonable now, but may not be appropriate in 10 or 15 years. Some found even thinking about the cash concept horrifying. One said: “It is like a virus, which destroys the whole system, especially for brain-dead donation, which does not negatively impact the donor.” • Dividing the money among heirs would be another problem (each family member’s share may differ). It could sometimes be impossible to reach a consensus on dividing the money, and there might even be a debate on determining who is entitled to inherit a share. If different family members receive different amounts, this could trigger conflict, and “incentive” may become “disincentive.” Moreover, some family members might not accept a share of such money, while others would.

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• The potential for corruption will be created. With direct payment, there is the risk of middlemen appearing who will try to take a share of the money in any possible way. • Compensationalist incentives may change feelings of pride and honor to shame and possible social stigma. According to the insiders’ experience from the Iranian model, even living donors in Iran are not willing to reveal their donation history. However, what they receive is compensation for what they have to tolerate during or after the surgical procedure, which is not valid in the case of BDDs. • It could lead to discrimination. The hidden message may be that the family was not wealthy enough, so they took advantage of their loved one’s death by donating their organs. The poor, or at least those who are not wealthy, do not wish to damage or discredit their family’s reputation. What might have been a clear decision for a grieving family to make, to consent to donation, is complicated by their determination to show that they are not greedy or do not need to make money by “exploiting” their deceased loved one. Wealthy families may refuse to donate because they do not need the money. The bottom line is that cash eliminates positive aspects of this humanitarian decision and becomes a disincentive, especially in the long term. • Monetary incentives might deter some potential BDD families. Family members may see the paying of money as a denial of the respect and dignity due to the dead loved one and antipathetic to a decision to donate without expecting anything in return. There would therefore be a risk that such people would become disinclined to give consent because the rewards defeat what they see as the purpose of donation and the pride they would take in their decisions. • Changes in donation rates could occur as the country’s economic status fluctuates, fewer when the economy is booming, more when it faces a recession. • The potential would exist for demanding more money depending on the numbers of organs utilized and the number of recipients. Some completely disagreed with any kind of direct or indirect monetary incentives to families and emphasized that BDD families should not take advantage of their important decision by getting some compensational incentive. They looked at this act as a collective duty to provide an organ pool (like blood donations) to help others. The government’s role would be to develop the infrastructure for a smooth, transparent, and scientific process. Instead of providing incentives, some believed an opt-out strategy could be more effective. One thought the ideal system could be presumed consent: “A non-donor card could be provided for those who do not like to donate. In this way, organs would be more available with no incentives, and the organ procurement team’s time would be saved as they would not approach the families of non-donor brain-dead patients’ families to get consent at the time of grieving.” Another interviewee said external motivations would be necessary when other factors fail. She firmly believed that deceased donation is a humanitarian and philanthropic action. Compensational incentives might distort this valuable feature of organ donation among families of deceased donors and society in the long term.

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Friends and families may accuse BD donor families of using BD donor as a source of income. by friends and families Some strongly considered monetary incentives for BDD as a waste of budget, and that a compensational incentive budget would be better spent on public education. One pointed out that the increasing rate of BDD in Iran without financial support is promising and proves that BDD advertises itself without compensational incentives. Word of mouth and public awareness have been fundamental to the program’s success. In his opinion, if BDD is well organized and publicized, there would be no need to focus on creating monetary incentives. Most believed in public education as the most influential factor in promoting an increase in the BDD rate to respond to the community’s needs. Most were confident that, even though economic problems are more prevalent nowadays, moral incentives and motivations are still more effective. The positive feeling of altruism is more precious than compensational incentives. If that feeling was not there, all other encouraging factors could not be influential. One participant said, “In Iran, the love of family is so deep that family members would not consider further financial benefits at the time of their death. Therefore, it could not encourage donation. They agree with organ donation to feel the blessing of their deed whenever they remember the deceased one.” Several participants could not imagine that anyone, and especially a Muslim, would seek a monetary reward in such a situation. Presenting the concept of compensational incentives at such a critical time could be offensive and risky. It is the feelings of altruism, humanitarianism, and connection with the deceased person that drive people to agree to organ donation. By their consent, the family feels that they have helped the deceased donor to amass more good deeds, and that God may forgive other possible faults during life because of the organ donation. One participant said: “If a mother knows that by having her child’s heart beating in someone else’s body, she is providing valuable positive deeds in support of her child in the eyes of God, she will easily give her consent to donation.” Although paying a large amount of money for an organ may positively impact the donation rate in the short term, moral values create a stronger and more sustainable motive in favor of giving consent to donation. When compensational incentives, such as priorities in employment, university entrance, or other areas get involved in this process, “donation” would no longer be the appropriate title for the action: families and the public would feel that the organs of the brain dead had been traded. Meanwhile, donating organs can be a way whereby donor families can relieve their grief. The donor’s life, especially their spiritual life, can continue in the recipients’ bodies. The family members feel proud and blessed whenever they remember their deceased loved one and their decision. The BDD family member said: “We feel a sense of calmness. I have not yet believed my husband is dead. It seems that there is a helping hand present for us. Maybe it is the prayers of the recipients. Thanks to God, someone has been saved.” On the other hand, some believed that in developing countries, including Iran, where people are in poverty, compensational incentives could be more influential and moral issues would take second place. One interviewee explained that the bulk of the community should be considered and not just wealthy, educated, and

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knowledgeable people. For some wealthy families, monetary incentives could not be relevant, but most Iranians are not familiar with honorary incentives, and they cannot be a strong motivation. Five other interviewees thought that monetary incentives could motivate families of brain-dead patients, in the same way as living donors, mainly due to Iran’s current socioeconomic conditions. They believed that while compensational incentives are not consistent with Iranian culture, poor living conditions might compel people to accept monetary incentives in some circumstances, even if unwillingly. Others believed it could be an effective, but not significant factor. Although honorary incentives are more important than compensational incentives for the family members of the deceased, adding financial incentives would boost motivation and encourage more donation. It could be persuasive in some situations when a family is willing to consent to donate but still has some doubts. Some others believed both monetary and non-monetary incentives could be effective depending on culture, social support, and people’s living conditions: both are necessary. The incentives should not be compulsory; instead, they should be an option for those interested. For those who do it out of a sense of altruism, bringing up the topic of financial support would be unnecessary. Incentives target people differently. One respondent believed that monetary compensation would boost the motivation in a small percentage (about 20%, based on this person’s evaluation) of potential BD donors’ families who are typically reluctant to give consent for donation. However, offering some money to the family members of the deceased who know that they are doing good does not harm anybody. Society could express its gratitude by providing monetary and other compensational incentives to donors’ families. For example, donors’ dependents and families could be supported financially and appreciation shown for their contribution by governmental organizations by giving access to recreational and entertainment facilities or helping such families to cope with challenges or difficulties they face in relation to their lives. Monetary incentives to encourage families to consent to donation are more complicated than expected. Maintaining a balance between financial and moral factors is crucial, and if the incentive exceeds a certain level, it may represent an unacceptable level of inducement. One of those favoring a compensational incentive policy for deceased donors’ families preferred rewards such as cash rather than other future compensational measures. She believed if the government could pay a direct lump sum, it would be a significant step forward. If it is not possible, the government could substitute other measures. The consistency of incentives is crucial from the government side, while from the other side, families’ freedom to choose the type of support they would like to receive is essential.

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9.3.4.3 Incentive Options for Deceased Donors’ Families The BD donor’s family has had to deal with a tough decision when grieving for a loved one, and nothing can replace their loss. There should be monetary compensation or social advantages that they can choose independently. One said, “I do not support measures like facilitated education (like what is currently common for families of war martyrs) or employment, neither for living donors nor deceased donors’ families. Any indirect financial supports like tax discounts, supportive packages, and others can be offered to them.” The suggested options were the followings: 1. Paying hospital expenses 2. Sharing the financial cost of funeral ceremonies and attending those memorials to honor the donor’s memory (most interviewees strongly supported this option) 3. Allocating free medical insurance to first-degree relatives of the organ donor 4. Exemption from military service for one of the sons of the family 5. Short pilgrimage trips: If a trip is provided to holy shrines in nearby cities, it could bring peace and solace to grieving families 6. School tuition fee discount 7. Tax discounts 8. Priority for first-degree relatives (familist incentive) in: • Organ transplant waiting list if a transplant is needed in the future. Some mentioned that the first-degree relatives (parents, spouse, and children) deserve to receive a reward from the community if they need an organ because they consented to donation with humanitarian and altruistic intentions in a traumatic situation and expressed sympathy for others. This approach appears practical, and compatible with our society, but many believed it might not be the best approach as the healthcare system should assess peoples’ need for an organ transplant based purely on their individual cases. It is also questionable whether ordinary people place any value on this advantage unless they are actually put in the situation. This incentive currently exists in Iran; it has been offered to live donors in case of kidney failure in their future life and to the first-degree relatives of BD donors since the MOH launched each of the two programs. • Employment opportunities • University entrance: However, some interviewees strongly disagreed with this suggestion. Currently, facilitated education for families of martyrs of the Iran-Iraq war exists, and has its critics. • Supportive packages. However, many interviewees believed that the donation component would become meaningless and reflect negatively on society if too many incentives were offered, and there would also be the potential for abuse. Such misconceptions have arisen in relation to live donation despite the live donor’s sacrifice. Suitable facilities must be provided without inciting negative social feelings toward this valuable act.

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Interviewees felt meticulous supervision and strict rules were essential, even for non-monetary incentives. It was emphasized that any financial benefits must fit within the law and social norms and be limited to those who deserve the incentives: first-degree relatives, meaning spouses, parents, children, and siblings. Funeral expenses were the only option that all interviewees agreed with. Both participants who believed in and those opposed to compensational incentives agreed upon this kind of support. Due to traditions, formal funeral ceremonies are recognized as a symbol of respect and love for the deceased person, and most grieving families spend lavishly on funeral services. Those services cost a lot, and such support seemed very reasonable to those in favor of compensational incentives for donor families, and it would not negatively impact public respect for the grieving families. Those who did not favor compensational incentives looked at this support as a respectful approach for showing community appreciation of the donor and their family. It can kill two birds with a stone: an honorary appreciation that helps the grieving families be proud of their decision, and an educational tool for the public. People gather around, talk with each other about their experience of the process, learn more about the brain-death concept, and observe the feelings of grieving families. As society affects our values on a large scale, this appreciation model may be a perfect way of publicizing organ donation after death. This form of governmental support appeared to lack the drawbacks discussed earlier. It would benefit families emotionally and financially, and their dignity and values would be appreciated. The BDD family member said: “We were amazed when we found out that the grave was a gift to us and had already been paid for. We did not expect to receive anything. We announced that our beloved one had donated his organs during the burial. It was a very emotional moment for all.” All interviewees believed that the donated organ is a priceless and precious gift whose value nobody can determine. The government’s contribution to funeral expenses is the best form of incentive with educational, emotional, and acceptable financial aspects and represents a very respectful form of honorary appreciation.

9.4 Reasons for Refusal to Consent to Donation There are multiple factors that motivate families to consent to organ donation, of which culture, education, ethical issues, social customs, religion, and other beliefs are key factors, especially in the case of BDDs. Interviewees unanimously expected a low refusal rate from the families of BD patients and without serious resistance because of Iran’s rich culture and history in respecting humans, helping one another, sacrificing their wants for other people, and the fact that Iranians are religious. Iranians follow what is in line with their religious beliefs, further increasing collective acceptance as a civic duty. In general, the cultivation and explanation of spiritual aspects of donation can enlighten minds and encourage people to consent to donation after their beloved one has experienced brain death. Many believe that

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when families refuse to donate, it is due to lack of awareness, wrong beliefs, and emotions. They believed that educating people in schools and universities could help the country solve the organ shortage problem by increasing acceptance of the concept of brain death and the potential for organ donation after death. Any form of appreciation of BD donors and their families by the government might also increase awareness. Most interviewees highlighted the necessity of public education as the only long-­ lasting solution and an influential promoting factor for organ donation after death, with a variety of different ways to implement this. Capacity building must be considered at different levels, like schools or community centers. If families have never discussed organ donation and its positive consequences among themselves, it would be difficult to expect people to give donation consent when their first experience of the concept is at the worst time possible, in the critical moments when they are told that they have lost a family member. They cannot be expected to understand the steps of the donation process and even the concept of brain death amidst the overwhelming situation of the loss of a loved one. If students are not appropriately educated about organ donation in schools, colleges, and universities, a culture of donation cannot be expected to develop among the Iranian public as a whole. Furthermore, the power and impact of mass communication tools or cultural and propaganda programs should be appropriately utilized by agencies such as municipalities and cultural centers. Otherwise, the expectation of increasing public awareness about donations will not be achievable. The BD donor’s family member said, “I was familiar with the concept of organ donation after death through one of the public exhibitions that I had attended many years ago before I faced my husband’s brain death. A team in a booth provided information about brain death and the person’s choice to have a donation card during life to give consent for donation in case of brain death.”

9.4.1 Aspects of Brain Death on Which the Public Needs to Be Educated Interviewers highlighted some misunderstandings about the concept of brain death, ranging from death denial to belief in miracles for a brain-dead person’s return to life. Providing information is necessary, but during the tragic situation where the patient’s brain death has been announced and the family is overwhelmed by negative emotions and anxiety is not the best time. In such a short time period, due to all the medical complexities of the procedure, shocked family members have to try to understand and digest information given by the medical team and engage in decision-­making on behalf of someone else (surrogate decision making). Engaging with fundamental concepts for the first time as part of the process of giving consent

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to donation is not desirable, so any possibility of increasing general knowledge about such concepts would be most helpful. Participants also brought up the following concerns and believed that by educating and publicizing donation experiences, we could expect the development of a culture of donation among the Iranian public: • Brain death vs. cardiac death: Many people are still unaware that both kinds of death are equal. The vast majority of brain-dead patients would also be cardiac dead within 48–72 h. Families suppose that if the donation does not take place, the patient might recover and they prefer to wait. Therefore, people need to be educated that there is no hope of returning to life after brain death. As a result, the refusal rate would be much less, and they would not be reluctant to agree to organ donation. One interviewee said: “If people absorb this concept, our mission will be 70% completed. They will agree to give consent without expecting to receive benefits. No argument would be necessary to convince people that if the brain-dead person is disconnected from the life-supporting machines, they will be dead and must be buried. Because they know it themselves.” • Brain death vs. coma: Many tell stories about those who recovered after several days of unconsciousness under ventilators. The public should be trained that coma and brain death are two separate conditions. • Fear of receiving less healthcare service when in need: One of the most important reasons for refusing consent for donation after death during life is fear. People worry that if they agree to be a donor, it may result in the healthcare system being reluctant to provide them with the same standard of treatment. “Fear is due to a lack of knowledge of the process. Provision of enough knowledge about the procedure may help them.” • Lack of knowledge about patients in need and how everybody can help them by agreeing to organ donation when faced with the brain death of a loved ones. Provision of the existing data would be enough to encourage people to do their share by giving consent to donate their loved one’s organs for this humanitarian decision, which would promote the BDD program. If it is compared with blood donation and people understand it as clearly as they understand their role in blood donation, they can see it as their collective duty to solve the problem of the high demand for organs. They can also become aware of their role in preventing the trade in human organs. • Disfiguring the body after organ retrieval is disrespectful to the dead. A commitment to reconstruction of the body, and cultivating and explaining religious aspects of donation as a godly and moral right deed may help people overcome this feeling. • Accusations of not loving the deceased. Family members are concerned that friends and other relatives may accuse them of not having loved or respected the brain-dead person. There is also a worry of what to tell other relatives or even friends. If donor families can share their thoughts and feelings with their friends or the public through media or social networks, people may feel more comfortable donating the organs of their loved one without any concerns about a­ llegations.

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One respondent emphasized that nobody should ignore the extent of the penetration and impact of mass communication tools on behavioral change. Using such platforms to help people become more knowledgeable about the BDD program and its different aspects is necessary. Donors’ families’ stories help the next-ofkin of future potential BD donors to be more knowledgeable about the concept of “brain death.” They feel more competent in making up their minds during the critical period of the declaration of brain death. • Where are the organs going? Sometimes people are concerned about whether the organs reach unworthy or just wealthy people. • What would they have wanted? Sometimes the families have questions about the deceased’s choice. Some families do not know what their dead loved one would have wanted, and the heavy burden of responsibility to decide on their behalf can feel intolerable. Having the facility to register for organ donation after death while alive is an excellent development, especially as the presence of such documents helps families know a potential brain-dead donor’s willingness and enables them to give consent for donation with peace of mind. Several participants expressed their pleasure that a “donation after death card” is now available in Iran, but they pointed out that it is still on a small scale. However, at least some people have registered for donation cards and have talked to their families about their wishes. This approach is more compatible and practical in our society and needs more promotion.

9.5 Conclusion Based on what we found through the interviews, all agreed that BDD is a valuable option for increasing the organ pool for patients in need for different reasons. They also agreed that families deserve any kind of honorary appreciation that is available. However, the only preference with a monetary element that had consensus was a contribution by the government to cover funeral expenses. Although it has a built-in compensational incentive component, it is a respectful approach. It can also be an excellent educational tool for the public without having any negative social impact on the donors’ families. Regarding legal unrelated paid donation (Iranian model), we encountered a wide range of responses, from approval to extreme objection, with most disapproving of the direct financial connection between recipient and donor. There were different suggestions for providing the funding for monetary compensation, ranging from a government-only fund to one shared by charities, insurance agencies, and recipients. Two recipients felt that coping with an organ from a live donor can be easier than from a deceased one, and knowledgeable participants were satisfied with the requirement that donor and recipient be of the same nationality and with Iran’s increasing rate of BDDs.

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References Ghods, A., & Savaj, S. (2006). Iranian model of paid and regulated living-unrelated kidney donation. Clinical Journal of American Society of Nephrology, 1(6), 1136–1145. https://doi. org/10.2215/CJN.00700206 Mahdavi-Mazdeh, M. (2012). The Iranian model of living renal transplantation. Kidney International, 82(6), 627–634. https://doi.org/10.1038/ki.2012.219

Chapter 10

A Comment on the Barriers to and Incentives for Organ Donation in Iran Mitra Mahdavi-Mazdeh and Anna Maliwat

10.1 Introduction Informing a patient that they will need dialysis treatments to survive is not an easy task for healthcare professionals who have repeatedly witnessed the fears of patients watching their blood circulating through pipes to be cleaned of uremic toxins. Meanwhile, accepting the reality of dependency on a machine for 3–4  h thrice weekly is not easy for patients. Managing End-Stage Kidney Disease (ESKD) is one of the most budget-­straining healthcare programs, and all countries are trying to increase their donor pool by increasing kidney donations from cardiac-dead as well as brain-dead people or else by utilizing innovative strategies such as ABO-incompatible transplantation and desensitization. This is because transplant is not only the best treatment modality for ESKD patients, it is cheaper for the healthcare system than other modalities. How to increase the available supply of organs for transplant is a controversial field, with a longstanding ethical debate on incentives. To increase the number of donated organs, our findings as presented in Chap. 9 showed a positive consensus on the provision of any form of honorary incentive and on the need for public education about BDD. Regarding familism as an incentive (priority on the waiting list for those whose first-degree relatives have donated their organs) which exists in Iran, the interviewees categorized it among honorary incentives and believed it does not have a significant effect on the decision in favor of donation. However, we found a much wider range of different, even contradictory, M. Mahdavi-Mazdeh (*) Tehran University of Medical Sciences, Tehran, Iran e-mail: [email protected]; [email protected] A. Maliwat University of Toronto, Toronto, Canada e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 R. Fan (ed.), Incentives and Disincentives in Organ Donation, Philosophy and Medicine 133, https://doi.org/10.1007/978-3-031-29239-2_10

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opinions on compensationalist incentives and opt-out strategies. Incentives with a financial component are a very sensitive issue that needs a very cautious approach. The pride and feelings of the families of BD donors should be considered, and any potential for social stigma needs to be avoided. In this chapter, we try to explain different the barriers to BDD and the successful solutions practiced in Iran, which has increased the rate of BDDs over the years. Based on the lessons learned over the last 30 years, we suggest some compensationalist incentives to increase BDD pools without negatively impacting the public view of the donors’ families. We found that the families of brain-dead individuals face several barriers to agreeing to donate their loved ones’ organs. As mentioned in the Introduction, knowledge of brain death, controversies regarding compensationalist incentives for live donation as opposed to BDD, and consent to donation on behalf of someone else are the main issues that need to be addressed as a prerequisite to any successful program. Unless these issues are resolved, considering different incentives will not significantly affect the rate of donations.

10.2 Barrier 1: Public Knowledge About Brain Death Public willingness to donate an organ after death has been studied in Iran for over 20 years. The proportion who express a willingness to donate has ranged from 45% to 80% in different studied populations and time frames. The highest rate was among teachers (85%), which supports the impact of knowledge on attitudes to BDD (Khoddami-Vishteh et al., 2011; Olang et al., 2014; Hejazi et al., 2017). A significant positive relationship between the tendency to register for an organ donation card and an understanding of the correct definition of brain death was also found in most studies. Many studies looked for the reasons for refusing to consent and tried to find the gap in people’s knowledge about brain death and organ donation. Studies conducted on university students, especially those in their early years, are valuable because the participants are from cities all over the country with different cultures, beliefs, and values. Moreover, their academic education has not had time to change their opinions. Accordingly, they may be a reliable representative of their families and the country’s population. Based on many studies, the main reasons for the negative attitude to organ donation after brain death were non-acceptance of brain death, belief in the possibility of coming back to life (or miracles), disrespect to the body, and fear of organ donation before confirmation of death. A survey of 380 members of the public in northeast Iran showed half of them believed that coming back to life after brain death was possible, and therefore most (74%) had an unfavorable attitude toward organ donation (Hejazi et al., 2017). At the other extreme, in another study on ICU nurses from the same region, 80% of the participants were clearly aware of their role in the organ donation process, 85% of

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them had positive attitudes toward donation, and 70% had spoken with their own families about organ donation (Masoumian Hoseini et  al., 2015). These studies prove that higher awareness of the reality of brain death correlates with a more favourable attitude to donation. Another study of 751 families eligible to consent to BDD from 2006 to 2013 in the northeast of Iran showed the most common reasons for refusal to consent to donation (after the “not willing to disclose the reason” category, 42%) were denial that death had actually occurred (20%), belief in miracles (12%), fear of organ donation to non-coreligionists (8.1%), the threat of organ trafficking (5.5%), and the sanctity of keeping the human body intact (4%) (Bahrami et al., 2017). The dilemmas facing families in Western countries who decline to allow donation have not included death denial or a belief in miracles. In the Netherlands, a study showed that three main concerns were their incompetence to decide on behalf of a dead person when that person had never made their wishes known, fear that the recipient may not deserve such a gift, and respect for the protection of the body and its integrity. These concerns were less common in Iranian subjects (de Groot et al., 2015). Presumed consent was another critical issue that most studies showed Iranian participants did not agree with. In a survey of 1000 people in southwest Iran, 18% agreed with presumed consent, which correlated with higher education levels (p = 0.02) (Shahbazian et al., 2006). In Olang et al.’s survey of medical students, only 9% were in favor of it, and 84.7% believed that such an important decision should either rest with the person involved (while they are still alive) or else with the grieving family. However, if the person had given consent for donation after death while they were alive, just 3% thought the family’s consent was necessary (Olang et al., 2014; Afzal Aghaee et al., 2015). These findings highlight the fact that health policymakers cannot consider strategies that might appear helpful in increasing the donation rate without taking account of public opinion. Public support and understanding are critical. A policy of presumed consent without enough education and support would cause conflict between government and people and did not have strong support from our interviewees. We believe the prerequisite for any policy to promote BDD would be a clear understanding of the concept of brain death and the value of registering as a donor while alive. Regarding the impact of knowledge about religious leaders’ opinions on willingness to donate, a cross-sectional study of 377 healthcare personnel in Tehran showed that both groups who were and were not willing to donate their organs after death knew that their religion supports organ donation (Abbasi et al., 2018). In contrast, in the study by Aghaee et al., a favorable attitude toward donation was two times greater among those aware of religious leaders’ positive opinions than among those who were not (OR: 2.56, 95% CI: 1.75–4.52; Afzal Aghaee et al., 2015). The results of our study agreed with Aghaee’s, that awareness of religious leaders’ positive official opinions (Fatwa) about organ donation after death can help families decide to donate. It seems that other factors may be playing a role in healthcare workers’ decision-making. Interestingly, willingness to donate blood did not correlate with

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willingness to donate organs after death (Abbasi et al., 2018). Generally, given that the positive opinions of religious leaders affect those who think about consent to donate, discussions between transplant professional and members of the clergy about different aspects of BDD should be encouraged. Most studies highlighted the fact that the main motivations for BD donors’ families to consent to donation were: coping better with the sense of loss through the life given to others, a sense of altruism, and obtaining heavenly rewards for the deceased (Khoddami-Vishteh et  al., 2011; Olang et  al., 2014; Afzal Aghaee et  al., 2015; Masoumian Hoseini et al., 2015; Hejazi et al., 2017).

10.3 Barrier 2: Controversy Over Financial Compensatory Incentives An idealized assumption that donation is an altruistic act has been publicized over the years and many place too much emphasis on altruistic, non-directed live organ donation. However, altruism alone cannot solve the shortage of organs, and other forms of adding incentives or removing disincentives have been proposed. One of the most controversial and unending discussions surrounding organ transplantation has been the ethics behind offering compensation or other incentives to live organ donors. The successful results of the Iranian model have led some to suggest adopting the same strategy to increase the number of BDDs by offering financial incentives to BDD families. To determine if any financial support should be provided to BDD families, we may first need to evaluate if paying live donors is ethical, what the cost drivers involved in transplantation are, the logic behind compensating live donors, and how this can be adjusted for BDD families.

10.3.1 Live Kidney Donors Deserve Financial Incentives (Iranian Model) Organ trafficking and transplant tourism is a trade where middlemen come into play, exploiting both desperate recipients and potential donors experiencing financial hardship. The intentions of the brokers in such a market are no different from those of drug dealers and sex traffickers and everyone shares the responsibility to stop it. The “Declaration of Istanbul on Organ Trafficking and Transplant” represents the collective effort of the transplant professionals’ community to combat this unethical black market (https://www.declarationofistanbul.org) In this unsupervised and unregulated market, donors are promised financial incentives, but may fail to realize the impact of post-operative expenses, such as medication and loss of income as they miss work during recovery. Most of the arguments against unrelated live

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donation are drawn from this unregulated market. That setting strict rules against the practice may not fully prevent commercialization but may instead lead to booming underground markets. A desperate potential recipient may look for different options, and their last resort may be developing countries with vulnerable donors. Iran, a middle-income developing country, initiated organ transplantation through a unique government-regulated and -funded Living Unrelated Renal Donor (LURD) program with a package of benefits for the live donor, including 1 year of health insurance and a “gift of altruism” in the form of a lump sum to cover the costs of travelling and lost wages, and as monetary compensation for the invasive surgical procedure and stress involved in the donation process (Mahdavi-Mazdeh, 2012). Paying live donors for their donation, which rarely involved any major subsequent medical complications, has also been supported by Iran’s Muslim leaders. In the Iranian model’s unrelated donation scenario, which many of its opponents characterize as a form of non-altruistic organ sale, donors are permitted to receive incentives. If professionals were to change their focus from judging the person to judging the deed, we might have fewer reservations. Kidney donation is a respectful deed. There could be a range of possible altruistic motivations for organ donation, from helping the recipient to supporting the donor’s other family members. An altruistic motivation for direct organ donation to a related recipient is to help the recipient in need. Meanwhile, a financial incentive to an unrelated kidney donor could be an indirect help to their family member who needs financial support. Good intentions are not necessarily limited to related donors. Unrelated donors might use the results of those incentives for other personal altruistic purposes. In an Iranian survey, 61% of 600 live donors had both financial and altruistic motivations. Their main reason for donating was to support a family member in financial need. Through these altruistic motivations, the presence of love in the donation process remains. Allowing donors to make their own choice is also a mark of respect for them and their opinions (Heidary Rouchi et al., 2009). Some critics of the Iranian model are willing to view related live kidney donations as a symbol of love but see unrelated donations as a market transaction. They accept a living donation to a relation as an unpaid donation, but ignore the fact that the expenses for such family members may (whether they are in the same household or not) come from the same family budget. Although no official transaction takes place, they are provided with financial support from the family budget of those who can work and earn money. The authors believe that unrelated donors deserve the same financial support. The ongoing shortage of living donors has led many, including some Iranian professionals, to consider compensation the most effective way to attract more people to become donors and help shorten the long organ transplant waiting lists. Because altruism is not enough on its own, altruism and compensation can co-exist. In a survey of 1011 US participants, payment negatively influenced the decision to donate in only 9% of the participants (Peters et al., 2016) and most of the 845 participants in the Boulware study were in favor of reimbursement of medical costs (91%), paid leave (84%), and priority on the waiting list (59%) (Boulware et al.,

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2006). The offering of monetary incentives positively impacts considerations of kidney donation, especially when the recipient is a stranger. Contrary to the arguments of critics, the introduction of incentives seems to have had an insignificant effect on the crowding out of donors. The significantly high percentages of people willing to donate in return for financial compensation shows that potential donors believe in some sort of compensation, or maybe that such a move removes disincentives. There may have been altruists in that pool of participants who wished to donate out of love, but they, too, appreciate some form of financial support to shoulder expenses related to the transplants (Boulware et al., 2006). By adopting such an incentive strategy, as mentioned in Chap. 8, roughly 7000 transplants took place before 2000, when BDD transplants were initiated; the waiting list was eliminated, and a strong infrastructure was built which paved the way for the BDD program.

10.3.2 Compensatory Incentives Mitigate Hidden Pressure on Female Family Members to Be Donors Live donation is much higher in females than males all over the world, except in Iran, and in those countries the donor gender disparity is especially significant among spouses. Based on data from 30,258 living-donor transplants (87% biologically related; 8% spousal; 5% non-spousal unrelated) in the US from 1990 to 1999, 68% of spousal and 56% of non-spousal related and unrelated donors were females. In a later decade, from 2005 to 2015, among 52,690 living donors the adjusted incidence of donation was still 44% higher in females than males. Interestingly, donation rates remained stable in females but declined in males in that period. This difference was more prominent in lower-income quartiles, which emphasizes that financial concerns may affect the donation rate and its demographic characteristics (Kayler et al., 2003; Dew & Jacobs, 2012). Similarly, of 682 Indian recipients, 66% of donors were female, and 91% of spousal donors were wives (Bal & Saikia, 2007). In another survey from Japan with 99 wives and 41 husbands, 14% of wife donors disclosed that their decision was partially influenced by someone (Takagi, 2015). It seems that women remain vulnerable to hidden pressures from their families to donate their organs, especially in male-dominated societies. Therefore, removing any possible disincentives for transplantation may mitigate potential pressures on females. Family financial concern is an important variable for gender disparity (Bal & Saikia, 2007). Assigning wives the status of homemakers places a heavy economic burden on their employed husbands, but may also result in activities posing health risks, such as organ donation, being left to the family’s female members. Similarly, in developed countries, economic status affects whether males or females proceed with kidney donation. In Canada and the United States, where it is common to have

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families with both spouses working, a gender pay gap continues to exist. Female family members donate their organs more frequently than male family members, who often earn more than females. Families could not risk the health of their main breadwinner, most usually male, because the recovery period could result in loss of income that may not be reimbursed (Zimmerman et al., 2000; Gill et al., 2018). Compensation for transplantation expenses in the Iranian model, removed this hidden pressure from females, and of 21,359 kidney transplants from 1997 to 2006, only 38.4% were female donors (Mahdavi-Mazdeh, 2012). Another helpful approach which took place in Iran was the use of laparoscopic nephrectomy, resulting in faster recovery and return to work. An interesting finding by Tuohy et al. showed that the use of laparoscopic nephrectomy eliminated gender disparity in live donors compared with open nephrectomy. They compared 115 live donors (60% female) between 2000 and 2004 who had open versus laparoscopic nephrectomy. In the open nephrectomy group, 37 out of 54 donors were female (69%). However, in the laparoscopic nephrectomy group, 32 out of 61 donors were female (52%). The researchers attributed this change in donor characteristics to a shorter hospital stay, less post-surgery pain, shorter recovery period, and the reduced scarring involved with laparoscopic nephrectomy. All these factors translate into less missed time from work and fewer analgesic drugs required, which donors may have to obtain at their own expense (Tuohy et al., 2006). The reduction in health and financial risks with laparoscopic nephrectomy may increase male willingness to be donors, especially those who are breadwinners and those who come from non-­ wealthy families. This experience was a success for a country with a finite health-care budget (6% of GDP). Despite government supervision and no involvement of middlemen, like any human-designed system, there were some unfortunate moral outcomes. Chief among these was the gradual direct participation of recipients in the financial compensation of live donors (under the supervision of the Patient Kidney Foundation and the government). Could this have been avoided? At this point in time, it is hard to judge. The creation of a direct financial connection between recipient and donor, to which was added the lack of knowledge among most people of the logic behind that policy, damaged to at least some extent the public’s attitude toward live donation, with many substituting the misnomer “organ sales” for “paid donations.” Issues such as the impact of donation on donors’ future job opportunities, unpaid recovery time after surgery, and other indirect expenses were, unfortunately, not articulated properly to the public. Live kidney donors became unwilling to reveal their donation history due to the social stigma over time, as mentioned in Chap. 9. Decision-makers probably did not anticipate that decreasing governmental financial support and adding the recipient as a direct contributor to the monetary compensation might lead the public to view the practice as organ “sale” rather than organ “donation.”

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10.3.3 Cost of Donation for Live Donor Vs. Deceased Donor We now focus on the expenses incurred by the donor as their “gift of life” makes its journey from donor to recipient. Unfortunately, donors themselves sometimes have to pay for this transfer, which some consider a specific disincentive to the donor. 10.3.3.1 Direct Medical Costs Medical costs consist of screening tests, imaging, the surgical procedure, the peri-­ donation period care, and post-surgery follow up for at least 1 year. There is a consensus that the donor should not be responsible for bearing these costs. The gift of life cannot be transferred to the recipient‘s body without some necessary laboratory and imaging for medical evaluation, or the healthcare staff care for surgery and follow up. which they all cost some money. In Canada, it is estimated that the cost of predonation evaluation, perioperative period (day of donation until 30-days postdonation), and 1  year of follow-up are $3596, $11,694, and $1011, respectively (Habbous et al., 2018). In the Netherlands, another country with high GDP and a well-developed health care system, these costs are paid by the healthcare system or insurance agencies, but in a middle-income country like Iran, only the expenses associated with the procedure itself and 1 year of medical insurance are paid by the government (Heidary Rouchi et  al., 2009; Van Buren et  al., 2010; Mahdavi-Mazdeh, 2012). 10.3.3.2 Direct Non-medical Costs Travel expenses, loss of earnings due to the screening test process, missing work after surgery, or even childcare and accommodation costs also exist. Ninety-six percent of donors reported at least one direct expense, averaging $523, and 27% reported average lost wages of $691. In the US, the average loss of earnings for donors without benefits was $4578 (Tushla et al., 2015). It is neither fair nor ethical that donors provide this gift to the recipient and also pay for lost wages out of their own pocket. 10.3.3.3 Indirect Future Non-medical Costs There are other serious but hidden costs that donors may incur. What are the policies of life or health insurance agencies regarding donors after transplantation? Will they be treated the same way as before? What may be the impact of donation on employment opportunities, especially when they involve physical work? Do employers offer job opportunities to donors and non-donors on the same basis? What about the post-donation recovery period?

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10.3.3.4 Indirect Psychological Costs Psychological concerns can include fear of death or surgical complications, concern for the impact on body image, or fear of future functional restriction. Professionals should properly evaluate these issues, which are also true for related donation scenarios (parent to child or one spouse to the other). We may need to view financial incentives as a form of compensation for or elimination of financial disincentives to living donors. Knowing the physical stresses and financial strains associated with donors’ pre- and post-operative experiences, and given that they constitute the most crucial element in the organ transplantation process, their generosity and willingness to donate should not be exploited by leaving them unsupported and uncompensated after donating. Sixty percent of the 250 donors in Van Buren’s study in the Netherlands supported some form of financial reward from the government to stimulate anonymous kidney donation (Van Buren et al., 2010). It should be noted that health insurance is mandatory in the Netherlands and all costs associated with tests, operations, travel, and 6 weeks of income post-donation are covered. Even with such support, almost 50% of donors said that they would have accepted financial reward if it had been offered at the time of surgery, and 20% believed that the government should have paid them some money in recognition of the good they had done for society, as well as to compensate for the slow and time-consuming reimbursement process. Live donors in New Zealand also believed that the donation process was stressful, time-­ consuming, and costly despite full coverage by their public healthcare system for the costs of the assessments, surgery, and post-operative follow up. None were in favor of payment for organs, but supported compensation for the direct and indirect costs incurred (Van Buren et al., 2010; Shaw & Bell, 2015). In the late 1990s, the Iranian government started to pay live donors Rials equal to almost US$3500 as their “gift of altruism.” At that time, recipients were not involved in any form of compensation, but payments from the government did not increase in parallel with changes in exchange rates and the inflation rate. Subsequently, when decision-makers decided to redirect the finite health budget toward the BDD program, recipients were required to participate in the compensation process, which is one of the drawbacks of the Iranian model experience. Payment by the government may be a reasonable approach for countries whose healthcare budget can afford it (Mahdavi-Mazdeh, 2012). Most experts, including us who are pro-compensation, believe that financial incentives are strategically designed and carefully implemented to protect living donors from health problems and financial loss, ultimately leaving them not enriched but in essentially the same economic and physical state as before donation. Compensation as a solution to the shortage of transplantable kidneys assumes that from the very beginning, living donors incur costs due to the financial and health sacrifice involved, and these costs are the main deterrent to donating.

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10.4 Compensationalist Incentives in BDDs The government pays the direct transplantation expenses in organ procurement units for BDD screening, transfer, management, and organ harvesting, and in transplantation centers for transplant operations (Mahdavi-Mazdeh, 2012). It is also important to note that a BDD does not incur any current or future expenses, unlike a live donor (such as recovery, sick days for recovery, or possible negative impact on health). Accordingly, the process does not need more financial support to be implemented more smoothly. However, the emotional burden on BDD families and the heroic decisions made in a very tough situation should not be forgotten. So, we believe that any model of appreciation or compensation should be aligned with the courage that they showed and decided in favor of donation during the limited time that they had and not because of expenses that they bear. They are looking for a way to cope with their loss and do some good deeds on behalf of the deceased person. However, introducing compensationalist incentives at a difficult time when they are grieving may affect the moral value of their humanitarian deed and turn it into a business transaction. Furthermore, as the interviewees in our study explained, it may become a route for creating possible initial disagreement and conflict among relatives, and ethical concern for their informed consent. There are three main concerns regarding where compensationalist incentives in the form of lump sum money can lead us: crowding out; undue inducement, and thus the exploitation of the poor and marginalized; and the commodification of human organs.

10.4.1 Crowding Out Some believe that financial incentives only decrease the number of families who are willing to consent to donation and paying them money might deny them dignity and respect. They may find that a reward is counterintuitive to the donative act, as they would prefer to do it as a good deed on behalf of their deceased loved one. A clear negative consequence of monetary compensation for BD donor families is that they may feel that they traded their loved one’s organs. Although monetary compensation may be the principal incentive in live donations, the opposite is true in BDDs, where moral motivation plays the major role. Therefore, there is a serious threat that such people could become disinclined to donate because the existence of a reward would defeat their purpose. Accusations of body fragmentation and organ selling against donor families by relatives and friends have been documented, so maintaining a balance between monetary and moral factors is crucial. In the study by Ahmadian, some donor families did not use condolence cards and banners from the transplantation centers to avoid being accused of hypocrisy (Ahmadian et al., 2019; Parsa et al., 2019).

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10.4.2 Undue Inducement This is another major ethical concern associated with financial compensation for organ donation. Undue inducement is associated with the coercion of those with low socioeconomic status to donate their organs. Skeptics argue that monetary compensation capitalizes on the needs of the poor and the marginalized who do not autonomously agree to donate but rather act out of desperation to improve their economic status. The financial gain from donating may force such individuals to participate in the process and involve themselves in various emotional conflicts and societal judgments to afford some necessities of life, pay off debt, send their children to school, or cover medical expenses. In those situations, post-decision regret can negatively affect BDD families.

10.4.3 Commodification of Human Organs Lastly, according to critics, the potential commodification of organs is one of the biggest flaws of the compensation model. The 1984 National Organ Transplant Act (NOTA) in the US declares that it is illegal for anyone to “acquire, receive or transfer any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce.” The rationale of critics is that providing financial incentives for organ donation is a morally unacceptable act that commercializes human organs. By price-tagging organs, the donor is dehumanized and objectified. In addition to this, as with any commercial product, the introduction of monetary compensation can result in the emergence of unregulated two-tier market systems mediated by brokers whose primary goal is to profit from the transaction between the consumer and the vendor (Cynowiec et  al., 2009). Moreover, those opposed to compensation believe that if financial incentives are enabled, those on the transplant waiting list with a higher socioeconomic status will have a higher purchasing power than those with a low socioeconomic status, creating a disparity in who receives organs. Furthermore, brokers motivated only by the desire for financial gain can easily exploit the poor who may be in dire need of money. There is the potential for corruption and the exploitation of BDD families who may receive only a small percentage of what is paid for the organs, leaving most of the money to the brokers, as has been happening with illegal live organ donations. Shahbazian et  al. studied the opinions of 1000 participants on compensating BDD families. Seventy-three percent were against any compensation for such donations, and there were no significant differences in results when gender and ethnicity were taken into account. However, when monthly income, defined as low (