How Genes Matter: Genetic Medicine as Subjectivisation Practices 9783839437667

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Bernhard Wieser How Genes Matter

body cultures

Bernhard Wieser (PhD) is Associate Professor for Science and Technology Studies at Alpen-Adria-University, Klagenfurt – Wien – Graz. In his research he investigates ethical, legal, and social aspects of genome research and their application in genetic diagnostics. In previous projects he focused on the analysis of processes contributing to the individualisation of responsibility in the context of genetic examinations. Moreover, he has investigated diffusion factors of genetic testing in medical practice and how diagnosed persons become confronted with their »genetic identity«. Technology and organisational frameworks of application are central to his research since they shape the ways in which genetic health problems are prompted and their possible solutions are pre-structured.

Bernhard Wieser

How Genes Matter Genetic Medicine as Subjectivisation Practices

Published with support of the Forschungsrat of Universitaet Klagenfurt

Bibliographic information published by the Deutsche Nationalbibliothek The Deutsche Nationalbibliothek lists this publication in the Deutsche Nationalbibliografie; detailed bibliographic data are available in the Internet at http://dnb.d-nb.de © 2017 transcript Verlag, Bielefeld

All rights reserved. No part of this book may be reprinted or reproduced or utilized in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publisher. Cover layout: Kordula Röckenhaus, Bielefeld Cover illustration: Digital illustration of dna, © adimas/fotolia.com Copy-editing: Angelika & Andrew Peaston Printed in Germany Print-ISBN 978-3-8376-3766-3 PDF-ISBN 978-3-8394-3766-7

Contents 1 2 3

Introduction | 7 Subjectivisation as theoretical framework | 17 Methodology | 37

PART 1: KNOWING ABOUT GENES 4 5

Genes in the womb | 59 Coming into being | 75

PART 2: MAKING BIOSCIENTISTS ACCOUNTABLE 6 7 8 9 10

New conditions for the sciences of life | 99 ELSA as a heritage of public controversies | 109 Public accountability of newborn screening | 121 Ethical boundary work | 139 Subjectivisation of bioscientists | 155

PART 3: BEING A PART OF IT 11 12 13

Science, politics, and the public | 177 Constituting oneself as a researcher | 197 Negotiating who ELSA researchers are | 241

CONCLUSIONS 14 15

Methodological challenges | 287 Why science policy context matters | 315

  Bibliography | 331

1 Introduction

“It is my belief that the basic knowledge that we’re providing to the world will have a profound impact on the human condition and the treatments for disease and our view of our place on the biological continuum” Craig Venter

With their discoveries, bioscientists claim to reveal the secrets of life. In doing so, they promise individuals the disclosure of the truth about their bodies; about its potentials and limitations. A powerful discourse attributing all life to its genetic foundation has emerged and has been stimulated thousands of times since. Showing little modesty, the promoters of bioscientific research speak confidently about the importance of their science and about the enormous potentials they ascribe to it (cf. Watson 2000; Venter 2007). Along with the ubiquitous accentuation of the economic relevance of the life sciences in a “knowledge based economy”, the claim is being repeatedly made, as to how fundamental the findings of modern bioscientific research are for the self-understanding of mankind. This claim is not only made by prominent bioscientists who seek to promote their work, but also critically scrutinised by philosophers who reason about the implications of such envisioned futures (cf. Habermas 2001; Sloterdijk 1999). Yet, exactly what are these fundamental implications of bioscientific findings that are supposed to have an effect on the way in which human beings think about their lives, and draw conclusions for their actions? In order to answer these questions meaningfully, it is essential to clarify how they are constructed. In other words, the framing and problematisation of bioscientific research is at stake and the processes through which we become who we are are being made the object of scrutiny in both the humanities and the social sciences. With the study at hand, I aim to empirically analyse precisely these processes in the context of genetic medicine. I focus on contexts of medical application in which the results of bioscientific research have already been implemented, and therefore in which I was

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able to interview people who have experienced diagnoses and learned to cope with genetic diseases and disabilities in their lives. Deciding to use an empirical approach implies a specific form of problematisation of genetic medicine. Neither have I tried to speculatively anticipate nor to deductively conclude from promissory rhetoric about the biosciences. Rather, I have tried to depart from what concretely happens in medical practice. Also, Wilhelm Berger argues for an approach that takes the situatedness of those individuals who are confronted with their own genes as a starting point for critical reflections of the biosciences (cf. Berger 2006). Choosing such a research strategy, I focus my analysis on two contexts of medical action in which human existence becomes related to its genetic make-up. These contexts are prenatal and newborn screening areas of application, in which the majority of testing aimed at the identification of genetic anomalies is being carried out. However, I do not raise the seemingly simple, but nevertheless lurid question: are we the product of our genes? A simple “no!” would answer that. Human beings are certainly not the exclusive and monocausal product of the genetic material in their cells. Any serious scrutiny of the processes through which we become who we are needs to consider that genes and human existence (i.e. genotype and phenotype) are not related to one another in a rigorously deterministic way. The bioscientific standard paradigm has recognised exactly this for quite some time (Fox Keller 2001[2000]:176 also pp. 187-188; Lemke 2003:473). Meanwhile, the study of environmental influences on the function of the genome (and hence on its causal qualities) has become a field in its own right known as “epigenetics”. Of course human beings are not merely defined through their bodily condition, even though currently many try to make us believe it would be actually so. Despite the numerous objections which are frequently made against such reductionist views of human life, the popularity of such biologistic interpretations is nonetheless striking. Recent philosophical essays have critically observed a general tendency according to which human life becomes increasingly objectified as “zoe”, i.e. it is viewed as bare fact in terms of its physical actuality (cf. Agamben 1995; Habermas 2001; Weiss 2009; Berger 2010). Nevertheless, the discourse about “the power of the genes” doubtlessly exists (cf. Hengstschläger 2006; Lemke 2007:150). Persistently this discourse suggests that the human genome holds the answer to the question: what is the matter with us? However, the point is not merely whether or not this claim can stand up to critical epistemological scrutiny. I am more interested in examining the extent to which this powerful discourse develops, shapes social practices and consequently affects human lives. Seen from this point of view, the human genome is not simply a functional unit of molecular processes and nothing else. On the contrary, it is crucially important to comprehend the genome as something that stands for social processes (cf. Clarke, Shim et al. 2003; Cox 2010:288). At no time does genetic medicine concern only the

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individual. Genetic conditions are always relevant for blood relatives of the diagnosed persons. Primarily, this is an implication of the fact that genetic anomalies can be passed on to offspring. But genetic issues are also relevant beyond the individual for other reasons. They concern social relationships of those identified with a genetic health problem as much as they concern the social relationships of their entire family (cf. Hallowell 1999). It is the aim of this study to show, how human beings become who they are in the context of genetic medicine. I will argue that what is genetically inscribed into human bodies is less relevant for this matter than the practices through which 1) human beings become “genetic knowers of themselves”, 2) people treat each other in relation to their genetic make-up and 3) people treat themselves in relation to what genetic medicine promises to reveal about themselves. The chosen approach for the scrutiny of the processes that constitute “who we are” draws on the works of the French philosopher Michel Foucault. Foucault himself explains that his research interest revolved around the practices through which something we call the “subject” becomes produced. For Foucault, the “subject” is the result of particular practices, which is why he uses the term “subjectivisation”. These subjectivisation practices are threefold. The first dimension concerns the practices that constitute the subject of knowledge and hence define its relationship to truth. The second dimension concerns the practices through which human beings act upon each other and thereby constitutes their relationship to power. The third dimension concerns practices through which human beings act upon themselves and thereby constitute their relationship to ethics (cf. Foucault 1997[1983]:262; Foucault 1982:208; Foucault 1997[1981]:177). In the study at hand, I use this threefold perspective and analyse concrete subjectivisation practices in the context of genetic medicine. Foucault himself has not applied his work to the analysis of modern bio-medicine. This is an enterprise contemporary scholars have undertaken (e.g. Lemke 2000; 2003; 2004; 2007, Rabinow & Bennett 2007, Rose 1999; Rose & Novas 2005; Rose 2007) and to which the present study strives to contribute. It is crucially important to appreciate that Foucault has a very specific understanding of the term “subject” that must not be confused with an essentialist conception of the self or subjectivity in the common sense meaning as a personal outlook on the world. To be clear, Foucault’s writings do not constitute a “theory” of subjectivisation. Any attempt to interpret his work in such a way does not appreciate how Foucault wanted his work to be understood. Foucault does not aim to produce a theory in a nomological sense, which can be used to make predictions or design reproducible experiments. Accordingly, I do not deduce hypothesis against the backdrop of Foucault’s writings in order to prove or refute his claims. Rather, I use his analysis of subjectivisation processes as an organising principle for the presentation of my own study. The focus on subjectivisation practices supports this endeavour and helps to structure the scrutiny of genetic medicine.

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1.1 I NITIAL

QUESTIONS

With this study, I aim to answer the following research question: What are the practices through which human beings become who they are in the context of genetic medicine? This question will be divided into three strands of analysis. Hence, I investigate the three following questions always related to the context of genetic medicine:   

Through which knowledge practices do human beings become constituted as subjects of knowledge? Through which practices do human beings act upon others and make them who they are? Through which practices do human beings act upon themselves and make themselves who they are?

However, I do not discuss these three questions in such general form. Instead, I use operational research questions, such as those I have investigated in the projects I carried out during the past eight years. Accordingly, my explanatory claims are limited to the field of my empirical investigations and the data obtained in these studies. However, in order to achieve a greater scope of analysis and a higher degree of generalizability, I have integrated relevant sociological literature.

1.2 M EDICAL

PRACTICES UNDER INVESTIGATION

When, at the end of the 1980s, James Watson went to the U.S. Congress in order to obtain funding for the human genome project (HGP) not only was the utility of this three billion US-Dollar heavy enterprise challenged, but ethical aspects were also critically addressed (cf. McCain 2002:113-114; Wexler 2003:406). In particular, the question was raised, whether the HGP would produce knowledge leading to an increase of prenatal testing and subsequent abortion (Cook-Deegan 1994:238). The significance of this issue can be fully appreciated when recalling the political debate in the USA during the 1980s. One of the central issues was abortion. Political analysis has found opposition to legalising abortion to be decisive for the election of Ronald Reagan as President of the United States (Petchesky 1981:207). However, reproductive medicine raised ethical, legal and social questions not only for the Congressmen, but also for individuals encountering genetic medicine. In the reproductive context the existential significance of genetic knowledge is immediately evident, since it is present in an experimental sense accessible to most people. There is another important reason, why I chose to focus on the time around birth. By far the most medical examinations for the identification of genetic conditions

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(both diseases and disabilities) are carried out at the very beginning of human life. Genetic conditions which are medically examined later on are very rare. Usually a test to determine such a condition is only performed if a conspicuous family history is known or other clinical symptoms indicate a genetic condition. By contrast, “common complex disorders” (i.e. illnesses where a number of genes play a role, such as diabetes, cardiovascular diseases, brain-stroke, psychoses and dementia) are certainly the object of intensive biomedical research. These efforts have, however, not yet led to concrete medical action routines on a large scale (cf. Lemke 2003:485). Screening programmes during pregnancy and right after birth stand in striking contrast to that. In their framework nearly every child today born in Austria or other parts of the developed world are routinely examined for an increasing number of genetic diseases and disabilities. For that reason, I have chosen to study these screenings more thoroughly.

1.3 O PENING

UP THE SCOPE OF THE PROBLEM CONTEXT

Empirical research requires intensive engagement with human beings in the field under investigation. As a consequence, researchers are challenged to constantly reconsider preliminary conclusions; sometimes even to dismiss them and start from scratch. The way in which people deal with knowledge about their genetic constitution cannot be anticipated. Above all, it is impossible to logically conclude this from scientific discourses which allegedly tell us who we are and what is the matter with us. Empirical social research implies interaction with human beings who have their own views and interests, which they stand by during empirical inquiry. This fact needs to be considered when analysing the perspectives of those confronted with genetic medicine (patients, tested individuals and their parents). In addition it is, however, also of great importance when engaging in interactive research with practitioners of genetic medicine. This is especially the case when expert interviews with the latter group are being performed, such as those reported in this study. The reasons for such a procedure are obvious as I will explain next. The social study of science and technology requires an in-depth understanding of the subject matter under investigation. Sociological scholars of science and technology are urged to acquire scientific knowledge of the field under investigation (Collins 1983:276). For that purpose it is vital to familiarise oneself with the respective scientific literature. In addition to having done this, I had the privilege to work in an interdisciplinary research group for more than 13 years and could continuously access the scientific expertise of my colleagues Sandra Karner and Armin Spök who are both trained as biologists and specialised in genetics. In addition to my colleagues trained in the life sciences, I closely worked together with Wilhelm Berger who is a philosopher of science and technology and Daniela Freitag who is a sociologist. This

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possibility was an invaluable advantage that contributed to my understanding of genetic processes. For the empirical investigation of prenatal testing and newborn screening it was, however, furthermore necessary to talk to researchers and clinicians in these investigated areas. For that reason, a series of expert interviews (cf. Bogner, Littig et al. 2005[2002]) has been conducted on which I will also draw in the present study. When talking to experts of genetic medicine one thing becomes immediately apparent: the interview situation is inseparable from its socio-political context. Hence, I argue that the ethical, legal, and social problematisation of the life sciences and their applications has a strong influence on how experts of genetic medicine interact with social scientists during the research process. It is therefore necessary to clarify the context in which such a socio-political problematisation has emerged. The life sciences are not only the central beacon of hope for a knowledge-based economy, they are also the subject matter of public controversies. Such controversies, as have repeatedly occurred since the 1970s, can be seen as crucial incitement of the societal problematisation of the life sciences (Wieser 2010a; in chapter 7, I will deal with this issue more thoroughly). For example, James Watson, being the first director of the HGP and well aware of the potential for further societal conflict accompanying the life sciences, proposed to devote 3% to 5% of the requested funding for the HGP to ELSI, i.e. the study of “ethical, legal, and social implications” (Marshall 1996:488; Everson 2007:147; Gannett 2008). In Europe and other parts of the world, this model of integrating philosophical and sociological reflection into bioscientific research programmes was initiated in a number of countries. In particular, the Netherlands, Finland, Germany, Norway, Switzerland, Canada, Israel and Austria are amongst them (cf. Nelis, Reddy et al. 2008; Kemper 2010). Furthermore, in the United Kingdom a significant investment was devoted to the study of societal aspects of genomics, although this did not happen under the ELSI banner (cf. Wellcome Trust 1998). In such a way, the problematisation of ethical, legal, and social aspects of the life sciences found a science-policy answer. It is exactly this socio-political context which becomes effective in actual research situations, when social scientists interact with their colleagues from the life sciences over the course of social research. As a consequence this observation requires an expansion of the problem perspective. Once the fundamental significance of the societal context and the organisational integration has been acknowledged it is only a small step to propose ELSA research itself as an object of study. To be clear, the expansion of the problem perspective is necessary, because genetic medicine affects not only people who are examined to determine genetic anomalies in their bodies, but also because the socio-political embedding of genetic medicine affects physicians and bioscientists working in this field. Thus, I draw attention to subjectivisation processes through which physicians and scientists become who they are in the context of genetic medicine. It is just consequential, to expand this

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thought further and also apply it reflexively upon subjectivisation processes of social scientists and their colleagues from the humanities who study ethical, legal, and social aspects (ELSA) of genetic medicine. This is because the organisational form of social scientific and humanities research bundled with bioscientific research has immediate influences on the concrete ethnographic research practice carried out under these circumstances. This is simply because during social inquiry, human beings are confronted with one another, they make assumptions about each other and they draw on these assumptions when they interact (cf. Goffman 1959; Goffman 1981).

1.4 R ESEARCH

QUESTIONS FURTHER DETAILED

Against this backdrop, it is necessary to detail the research question posed at the outset. When I ask: through which practices do human beings become who they are in the context of genetic medicine, then this question needs to be pursued in relation to three sets of social actors: a) people, who are examined to determine genetic anomalies, b) bioscientists and physicians working in the field of genetic medicine, and c) social scientists and their colleagues from the humanities who study societal issues of the life sciences and their applications (ELSA researchers). The expansion of the problem perspective is relevant far beyond the given study of genetic medicine. Arguably, the study of ethical, social and legal aspects of genetic medicine in its organisational integration into bioscientific research cannot be appropriately captured with classical models from the sociology of science as for instance outlined by Robert Merton (Merton 1996[1942]). However, classical sociology of science is inadequate not just because of epistemological differences between the social and the natural sciences as Karl Mannheim has argued (cf. Heintz 1993:528-432; Bammé 2004:2126). New approaches are required to adequately capture the way in which the study of ethical, legal and social aspects of the biosciences are organised and carried out today. ELSA research is new, because the context of its emergence is not the scholarly carrel or the laboratory bench, but is constituted by societal problems which obtain their significant thrust through public controversies and economic expectations. In particular, the organisational form is new, where the scrutiny of societal aspects of the life sciences is made an integral part of bioscientific research. It is the task of this study to expound these complex circumstances not as mere obstacles of the individual researcher, but to present them as structural conditions of a specific class of scientific research. When one is to investigate subjectivisation practices of genetic medicine as a contract researcher in the framework of the mentioned research programmes, the problem can only be understood in its full significance if the context of such analysis itself is made the object of scrutiny.

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1.5 R OADMAP The study is organised in three parts. This format follows the three groups of actors as analysed with this study: a) those confronted with genetic medicine (i.e. individuals who are confronted with the results of genetic examinations), b) professionals (i.e. physicians and bioscientists who work in the field of genetic medicine) and c) social scientists and their colleagues from the humanities who reflexively deal with genetic medicine. In each of these three parts, I will discuss empirical findings obtained over the course of my project work during the past eight years. Furthermore, this will be related to relevant literature. In the chapter following this introduction (chapter 2), I explain the Foucauldian understanding of “subjectivisation”. In this way, I introduce a theoretical framework that gives the present work its focus. Chapter 3 explains the methodological considerations of the study. After that, chapters 4 and 5 contain my analysis of subjectivisation process of persons who are confronted with genetic diagnoses in the framework of prenatal testing or newborn screening. In part 2 – chapters 6 to 10 – I turn from individuals confronted with genetic medicine to another group of actors. Henceforth, I study bioscientists and physicians working in the field of genetic medicine. In relation to this group of actors, I analyse practices through which they become who they are in the context of genetic medicine. Before I discuss my empirical data, I seek to clarify important issues at the outset of part two. To begin with, in chapter 6, I provide an introduction to part two and outline current changes in the scientific domain. Here, I discus literature that allows me to conceptualise the role of philosophical and sociological reflection of bioscientific research as a new form of scientific practise. In such a way, I draw attention to the significance of the framework conditions under which the scrutiny of ethical, legal and social aspects of the life sciences takes place. In particular, I will address the importance of public controversies, which have occurred over various bioscientific technologies since the 1970s. This will be done in chapter 7. These controversies are crucially important for the context of emergence of ELSA research. This is only shown for the United States, but also for Europe where such public controversies about the new biotechnologies were sparked off especially during the 1990s. In doing so, I address the following aspects and discuss them in respective chapters. The way in which collective decisions are being made transparent is the topic of chapter 8. There I will explain Sheila Jasanoff’s “civic epistemology”, a concept she used to study differences amongst political cultures and the way in which they constitute a knowledge basis for collective decisions. Using a comparison of accountability practices related to the application and expansion of newborn screening in the UK and Austria, I demonstrate such processes and substantiate them with empirical evidence. The point of such analysis is that it elaborates on the interconnectedness of bioscientific practice with political decision-making processes. The increasing interlocking of science, policy and the public sphere is finally relevant for the specific ways in

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which physicians and bioscientists are being subjectified. In Chapter 9 I analyse the interaction during the research process takes up the boundary work approach provided by Thomas Gieryn (Gieryn 1999). I will demonstrate how the interviewed experts perform boundary work in relation to ethical aspects of their work. Chapter 10 summarises the preceding two chapters and focuses on subjectivisation processes of bioscientists in a condensed form. Up until this point, the present study applies a micro-sociological perspective and draws on the research interview as its empirical basis. In chapter 11, I will expand this perspective in the third part of this study and scrutinise subjectivisation processes in genetic medicine in a broader framework. For that purpose, it is necessary to discuss the relationship between science, policy, and the public, which provides a theoretical framework for the third part of this study. Chapter 12 deals with explicit subjectivisation processes of social scientists using empirical data. Therewith, I turn to the third group of actors. In particular, I discuss how ELSA researchers see their own work. A chapter follows (chapter 13), in which I will explain, how ELSA researchers negotiate their self-image with how they think they are perceived by those they encounter during the research process. The study is finalised with two concluding chapters. In chapter 14, I perform a methodological reflection followed by a discussion of science-policy frameworks (chapter 15). Ultimately it is these framework conditions which are decisive for what is possible in a research process and for how social scientists and their colleagues from the humanities become perceived by those they study.

2 Subjectivisation as theoretical framework

Medical consultations cause human beings to confront themselves. Functions of body and mind are objects of examination. Each failure, impairment, and anomaly signifies fragility and finiteness of human life. Physicians draw attention to what has immediate consequences for how human beings conduct their lives. Hence, medical knowledge concerns the behaviour of the individual. In a very general sense, it concerns the possibilities and limitations of actions which altogether constitute what we call our lives. More specifically, medical consultations concern therapeutic or preventive actions through which functions of body and mind should be reconstituted or dysfunctions should be precluded. Furthermore, during medical conversations physicians address health averse behaviour, which might harm function and capability of the human body and mind. Given that human beings are defined by their actions, medical conversations are concerned with what makes us who we are. The analysis of the practices by which individuals become confronted with themselves is inspired by the writings of Michel Foucault who used the term subjectivisation for his analysis of such practices. With this approach, I propose to use a perspective for the present study that permits the discussion on how biomedical research and its medical applications have changed human lives. Accordingly, I have chosen to give my engagement with the ethical, legal and social aspects of the life sciences a specific focus. Rather than discussing the consequences for the human being as a member of a species, as for instance Habermas (2001) has attempted, I discuss concrete contexts of action in which human beings become immediately confronted with genetic knowledge and medical practices. The Foucauldian perspective offers conceptual “tools” for this purpose, which help to organise such a project. For the present study, I have chosen the notion of subjectivisation to this end. Before I move on to explain subjectivisation, I would like to emphasise that using Foucault does not mean that I intend to assess any pre-formulated hypotheses or to empirically substantiate an existing “theory”. Neither do I aim to characterise modern genetic medicine as a repressive practice. Foucault was not a theorist of repression.

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This is a criticism that, at best, could be made in relation to his recipients. For the study at hand, the Foucauldian perspective consists in the specific use of the notion “subject”. It is of greatest importance to mention that from Foucault’s point of view the “subject” is by no means something pre-existing (a priori) or something that exists for itself. This view is central for the Foucauldian thinking. Accordingly, Foucault has tried to bring to light the practices and technologies through which the subject is brought about in the first place. Against this backdrop Foucault poses the following programmatic question: “What are the games of truth by which man proposes to think his own nature when he conceives of himself as a living, speaking, labouring being; when he judges and punishes himself as a criminal? What are the games of truth by which human beings came to see themselves as desiring individuals?” (Foucault 1992[1984]:7)

However, already in “The Archaeology of Knowledge” Foucault has argued firmly against the idea of an essential self (cf. Foucault 2002[1969]). Later on, Foucault explains how he wants his position to be understood. He explains: “What I have rejected was exactly to construct a theory of the subject in advance – such as for example phenomenology or existentialism was able to do – and then based on this subject theory proceed to questions such as for instance: how a particular form of cognition is possible” (Foucault 1985:18, translation BW). On another occasion, Foucault emphasises that for him the subject is by no means the condition for the possibility of experience (cf. Foucault 1990[1984]-b:133). Rather he sees the matter the other way around. Because the subject does not exist a priori, it is necessarily constituted by experience. Hence, the subject is historical, and as Foucault adds, it is variable and manifold (Foucault 2002[1969]: 211; Foucault 1985:18). Foucault states: “My way of being no longer the same is, by definition, the most singular part of what I am” (Foucault 2002[1994]:444). The subject is something that needs to be created, something that needs to be brought about by particular practices in the first place. The way in which this precisely happens cannot be determined at the outset, and it is certainly not determined by the Foucauldian perspective, either. On the contrary, careful empirical analysis is needed in order to study actual subjectivisation practices. The Foucauldian perspective merely draws attention to actions and suggests asking how these actions are precisely performed in the given case. In particular, the Foucauldian perspective favours an empirical examination of subjectivisation practices in particular contexts. Furthermore, it is important to consider that subjectivisation processes are open in principle and never lack an alternative. Foucault points to this fact by claiming that there are always opportunities for resistance (Foucault 1998[1976]:95). In particular, the proposed perspective allows me to analyse bioscientific research and its medical applications in relation to the ways in which human beings become

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subjectified in the context of genetic medicine and how they contribute to that with their own actions. From the chosen point of view, genetic medicine can be seen as a social process. Rather than attributing the significance of the human genome in order to constitute subjectivisation to molecular-biological causalities, I see subjectivisation as the result of practices by which human beings become confronted with (the truth about) their genes. This means, I do not attribute subjectifying power to the genome, but to social practices which make us to who we are in the context of genetic medicine. From this perspective, the subjectifying effects of genetic medicine are not secondary effects of an unproblematic scientific knowledge (which would only become problematic when applied). This becomes particularly clear when bioscientists, physicians and social scientists are included in the analysis of subjectivisation processes.

2.1 T HREEFOLD

SUBJECTIVISATION

Foucault is famous for his analysis of power. However, towards the end of his life, he explains: “Thus it is not power, but the subject, which is the general theme of my research” (Foucault 1982:209; cf. also Foucault 1984:134-135 and Foucault 1985:9). Furthermore Foucault states: “It is true that I became quite involved with the questions of power. It soon appeared to me that, while the human subject is placed in relation of production and of signification, he is equally placed in power relations which are very complex” (Foucault 1982:209). Therefore, the analysis of power is “merely” a particular perspective of analysis which can be used for the scrutiny of subjectivisation practices, namely such practices by which human beings act upon others. In the analysis of disciplinary and bio power Foucault studied subjectivisation technologies through which human beings domesticated, utilised one another, and made each other productive, amenable, and administrable. Foucault was always interested in subjectivisation practices and he studied them from various perspectives. Subjectivisation processes were already the focus during his early works. In those works, he analysed processes by which human beings turned themselves into objects of scientific enquiry (cf. Ortega 1997:23). In an article, published in 1982, Foucault explains his oeuvre. He declares that the general theme of his work was the engagement with the subject, which he had studied using three different approaches. In the aforementioned text Foucault summarises these three approaches as follows: “First, a historical ontology of ourselves in relation to truth through which we constitute ourselves as subject of knowledge; second, a historical ontology of ourselves in relation to a field of power through which we constitute ourselves as subjects acting on others; third, a historical ontology of ourselves in relation to ethics through which we constitute ourselves as moral agents. So there three axes are possible for genealogy.” (Foucault 1997[1983]:262)

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In his essays, lectures and interviews, Foucault repeatedly explained how these three dimensions of analysis are related to one another and how they shed light on subjectivisation practices in different ways, using different methods each time (cf. Foucault 1982:209; Foucault 1997[1983]:262; as well as Foucault 1981:36). Foucault explains that this means he had studied three problem areas: truth, power and individual behaviour. He emphasises: “These three areas of experience can only be understood in relation to each other; it is impossible to understand one without the other. What bothers me about the previous books is that I considered the first two without the third” (Foucault 1990[1984]-b:134, translation BW). Already the analysis of power required a theoretical shift and the development of a new method, which he called “genealogy”. Foucault explains: “So I came to raise the problem knowledge/power, which for me is not the most fundamental problem, but an instrument, which makes it possible to study the relationship of subject and truth games in a way that seems to me is the most precise” (Foucault 1985:17, translation BW). Later, Foucault discovers the need for a second “theoretical shift” (cf. Foucault 1992[1984]:6). The reason for that was for him that this was necessary for the analysis of subjectivisation practices which human beings perform in relation to themselves. Only through this second theoretical shift, Foucault was able to understand the subject as the central theme of his work. In his own words this reads as follows: “I would like to say, first of all, what has been the goal of my work during the last twenty years. It has not been to analyse the phenomenon of power, nor to elaborate the foundations of such an analysis. My objective, instead, has been to create a history of the different modes by which, in our culture, human beings are made subjects. My work has dealt with three modes of objectivation which transform human beings into subjects.” (Foucault 1982:208)

In his early books Foucault aimed to investigate how the subject became the object of sciences he calls the “human sciences”. In particular, he counts medicine, psychology and pedagogy as such sciences as well as all other disciplines which scrutinize the human being, its nature, behaviour and soul. The analysis of power focussed on practices by which human beings act upon each other. In this context Foucault especially studied disciplinary methods. The third focus lay on the analysis of self-technologies, by which human beings act upon themselves. According to Foucault the subject constitutes itself through “historical practices” which can be found and analysed in every culture (cf. Foucault 1997[1983]:277 and Foucault 1985:19). The analysis of such self-technologies led Foucault to a deeper engagement with ancient philosophy. In particular, he became interested in the moral imperative for “self-care”, in which he saw an elaborate practice by which human beings aimed to make themselves into who they are.

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All three perspectives are crucial for the present study. Following the Foucauldian perspective, I investigate subjectivisation processes in the context of genetic medicine, also looking at three dimensions: 1) with regard to practices that constitute the subject of knowledge, 2) with regard to practices through which human beings act upon each other, and 3) with regard to practices through which human beings act upon themselves. I now briefly outline how I apply these three axes of analysis in relation to the context of genetic medicine. I relate each of the three Foucauldian analytical perspectives to three groups of actors in order to study their respective subjectivisation processes in the bioscientific network. One after the other I study a) patients and clients (i.e. counselees), who are confronted with genetic medicine, b) professionals of genetic medicine, including researchers and physicians, c) social scientists and their colleagues from the humanities who examine ethical, legal, and social aspects of the biosciences and their medical applications. I analyse the subjectivisation practices of each of these groups of actors, applying all three analytical axes each time. Figure 1: Subjectivisation and structure of analysis [Graphics

Three axes of subjectivisation

Bioscientific network

Structure of analysis

The analysis using these three dimensions of subjectivisation can be outlined as follows: 1.

The scientific scrutiny of the human being goes along with specific constituting of the “subject of knowledge”. Foucault explains this by raising the question: how the subject has to be constituted in order to be able to access truth? Along these lines he is interested in the “truth games” by which the universal subject of knowledge came into existence. For Foucault, the philosopher René Descartes represents this historical occurrence (Foucault 1997[1983]:279-280). When the modern natural sciences rose, the subject of knowledge was no longer a specific, i.e. a subject which needs to acquire specific qualifications in order to obtain access to truth. The subject of scientific cognition is an abstraction used for the epistemological justification of cognition (knowledge). Once the laws of nature

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2.

are found, they are in principle accessible to everybody. In this sense the subject of knowledge is universal. This understanding of the subject was fundamental for the emergence and development of the modern (natural) sciences, which after all turned the human being into an object of research. a. Using this dimension of analysis, I, however, do not inquire about the universal subject of knowledge in bioscientific research. Instead, I am interested in the specific subject of knowledge and in the practices through which it precisely becomes that. Certainly, the modern life sciences also act on the assumption that their discoveries are universally valid and are in principle accessible for everybody. But the very processes by which exactly this knowledge acquisition happens are problematic. Genetic examinations and the implications of a possible diagnosis are explained during medical conversations. In this context, it is the specific subject to which the truth about the genes is made accessible. The knowledge conveyed – which allegedly tell us who we are – was produced by modern biomedical research. For example: pregnant women or the parents of a diagnosed newborn are turned into subjects of knowledge in very specific ways. How this precisely happens is the concern of empirical research which I will discuss in part one of this study. b. However, I do not only study human beings who (or whose children) are tested for genetic conditions. Two additional groups of actors relevant to genetic medicine are included in the analysis. My research interest focuses on both professionals of genetic medicine (physicians and bioscientific researchers) and ELSA researchers (including both social scientists and their colleagues from the humanities who study ethical, legal, and social aspects of genetic medicine). Each of these groups of actors is turned into subjects of knowledge in specific ways. In part two of the present study, I scrutinise practices through which professionals of genetic medicine are constituted as subjects of knowledge when they are encouraged to give accounts of their professional activities. Also in this concern, the subject of knowledge is a specific, which needs to be qualified as legitimate. c. In part three, I eventually turn to those who study ethical, legal, and social aspects of the life sciences using a social science or humanities perspective. When pursuing their empirical research and interacting with other actors of genetic medicine, they are perceived while doing so, as specific subjects of knowledge. Consequently they need to qualify for such interactive processes in a very specific way as I shall argue. Subjectivisation processes do not happen just like that. Rather, they are initiated, organised and structured by specific measures. Against this backdrop, Foucault investigated practices through which human beings act upon one another. In this

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regard, Foucault was interested in practices through which human beings effectively are being made to who they are by those who act upon them. The analysis of such processes through which precisely this happens is the concern of the second dimension of analysis. a. In the present study, I draw on this perspective by analysing practices through which medical personnel act upon those who are confronted with genetic examinations over the course of prenatal testing or newborn screening. Human genetic counselling and the actual performance of respective tests are of particular interest in this regard. In my analysis, I focus on practices by which parents are encouraged to learn more about genetic anomalies causing diseases and disabilities, and who are confronted with the offer to very concretely reveal the truth about the genes of their offspring. Apart from the specific way in which the truth is being conveyed in a counselling conversation, I show how parents become subjectified when they are encouraged to make decisions whether or not to undergo genetic examinations. The way in which this precisely happens is the concern of my analysis. b. Following the structure of this study, I also apply the analysis of the practices by which human beings act upon one another to both of the aforementioned additional groups of actors. For that reason, I turn to the practices by which bioscientific professionals become subjectified. Bioscientists need to comply with complex demands in order to be able to pursue their jobs. For quite some time it has not been sufficient to simply prove one’s own aptitude in the laboratory. In a much more comprehensive way, bioscientists and physicians are challenged to demonstrate accountability, responsibility, and ethical conduct as effectively as they need to prove their contribution to science communication and the promotion of coming generations of scientists (pupils and students). c. In a quite similar fashion social scientists and their colleagues from the humanities are the target of such ‘acting upon’. Indeed, this third group of actors is subjectified in a very specific way when they study ethical, legal and social aspects of bioscientific research and its clinical applications. ‘Who they are’ for their counterpart in a given research context is not merely the result of practices by which their research area is actually initiated and organised (for instance as ELSA research). Studying self-technologies, Foucault developed his third analytical approach. Here, he turns to practices by which human beings make themselves into who they are. This contribution by oneself is essential for the efficacy of subjectivisation processes. Consequently, the analysis of such self-technologies gains in importance.

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a.

b.

c.

It is of great interest for the analysis of subjectivisation processes to study how human beings confronted with genetic medicine act upon themselves and in doing so, how they turn themselves into who they are. In this regard especially, the development of the “subject of responsibility” lies in the centre of analysis. I show how human beings act upon themselves in a way through which they can understand their own behaviour as responsible, and can constitute themselves as loving and caring parents. Without doubt, also physicians and bioscientists turn themselves into who they are in the context of genetic medicine. The stimulation through scientific measures to subjectify physicians and bioscientists in the above mentioned way becomes only fully effective when the respective individual contributes itself and acts upon itself. The constituting of physicians and bioscientists as responsible persons, who carefully deal with public resources, who explain their work to a broader public and who intend their research to be socially useful is impossible without the contribution of the person themself. Against this backdrop of the Foucauldian subjectivisation perspective, I discuss all the practices by which physicians and bioscientists act upon themselves. Finally, I use the Foucauldian perspective to analyse the practices by which social scientists and their colleagues from the humanities subjectify themselves when they engage with genetic medicine. During direct encounter with bioscientists over the course of the research process, social scientists are challenged to understand their own role. Using an empirical analysis, I will show how ELSA researchers reflect upon the perception of their person and their behaviour in the research process. This self-reflection is used as an important basis for how ELSA researchers act upon themselves and thereby constitute themselves as research subjects.

2.2 C URRENT

READINGS OF

F OUCAULT

In his book on “Governmentality and Biopolitics” (2007), the German social scientist Thomas Lemke has summarized the current reception of Foucault. In this regard, he mentions a number of French authors (amongst which are François Ewald, Daniel Defert, Giovanna Procacci, Jacques Denzelot and Pasquale Pasquino), who have tried to study the issues addressed in Foucault’s works using empirical means of inquiry. In the 1990s the foundation of a network on the “history of the present” in London stimulated the reception of Foucault especially in the English speaking world (cf. Lemke 2007:48-49). Of course, the reading of Foucault is very broad. For instance there is a prominent reception of Foucault amongst feminist literature (cf. Butler 2004 and others). It has become nearly impossible to fully comprehend the entirety of the

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current reception. For that reason, I limit myself to a few aspects, which I regard to be crucial for the study at hand. In the current reading, Foucault is increasingly interpreted as a critic of neoliberalism (e.g. Miller & Rose 2008, Rose 1999, Bröckling 2000; 2007; Lemke 2007). In the UK in particular, the works of Foucault are being used for the criticism of neoliberal politics of British governments. In this regard, it is important to mention that such critical analysis focuses on actions of the political administration and how they brought about the neoliberal state. Thus, a significant part of the current Foucault reception focuses on a very particular group of actors whose actions they aim to analyse (Lemke 2007:72). In the UK especially, Thomas Osborne and Nikolas Rose have applied the Foucauldian perspective to the medical field. Both authors deserve the credit for the British Foucault reception (cf.Osborne 1993; Rose 2007.). Also in Germany, similar criticism has become very prominent since approximately the year 2000. An edited collection by Ulrich Bröckling, Susanne Krasmann and Thomas Lemke can be seen as a programmatic attempt to benefit from Foucault’s thinking for the analysis of contemporary societal processes (Bröckling, Krasmann et al. 2000). The aforementioned authors, and all others who draw on Foucault in their wake, have one point of reference in common. They concentrate on a very specific aspect of Foucault’s works: governmentality. Foucault has proposed this term in order to describe what he calls the governing of individuals. He states on this issue: “The term itself, power, does no more than designate a [domain] of relations which are entirely still to be analysed, and what I have proposed to call governmentality, that is to say, the way in which one conducts the conduct of men, is no more than a proposed analytical grid for these relations of power.” (Foucault 2010[2004]:186)

The notion “governmentality” occurs in Foucault’s writings after both of his books “Discipline and Punish” (1975) and “The Will to Knowledge” (1976) have been published. In a certain sense, “governmentality” is a transitional notion, inasmuch as it immediately follows the analysis of power. Moreover, in the context of its application a theme arises which becomes the central issue of Foucault’s last two books: the study of self-technologies (Foucault 1990[1984]-a; 1992[1984]). In order to explain this period of transition, I need to say a little bit more. In his analysis of power, Foucault has strongly emphasised that power is productive. As he writes, power brings something about (Foucault 1991[1975]:194). In such a way, Foucault argues against what he calls “the repressive hypothesis” (cf. Foucault 1998[1976]:17-49). The productive quality of power consists in its effect to stimulate and create specific behaviours. First of all, Foucault mentions practices which stimulate human beings to be useful. He studies the modes of operation of power using two problem areas: at first in the field of criminal justice and immediately after that

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in the field of sexuality. For Foucault, sexuality is interesting because in the 18th and 19th Century sex became an object of knowledge, namely a particular kind of knowledge which was brought about by the natural sciences and particularly by medicine (Foucault 1998[1976]:117). On the one hand, this knowledge allowed targeted and effective interventions on human behaviour and on the other hand, this knowledge became the foundation of practices by which human beings were classified and administrated. Moreover, sex is interesting, because it exemplifies practices through which human beings became encouraged to speak in a very particular way about themselves. The science of sex was not only used as a system of explaining pathological and deviant behaviour, but sex became the central point of reference for a particular practice of speaking the truth about oneself (Foucault 1998[1976]:11). Retrospectively Foucault summarises the technologies of power he analysed as follows: he talks about practices, through which human beings act upon the behaviour of other human beings (Foucault 1997[1983]:262). Precisely because his interest is, how individual behaviour can be directed, stimulated and new forms can be created, Foucault talks about the governing of individuals and about governmentality (cf. Foucault 2010[2004]:186). However, this terminology appears only gradually. Increasingly so, this is only after the publication of the first volume of “The History of Sexuality” (“The Will to Knowledge”). More and more, Foucault talks about governing and technologies of governing when he addresses the ways in which human beings act upon the behaviour of other human beings. Nevertheless, the language of governing does not totally supersede the notion of power. Eight years lie between the publication of the first and the second volume of “The History of Sexuality”. Foucault explains the long break, in which he did not publish a book, by the reworking of his theoretical perspective (cf. Foucault 1990[1984]-a; 1992[1984]). He never wrote one of the volumes he initially announced in the introductory volume of “The History of Sexuality” (Foucault 1998[1976]). Instead he turned to practices through which human beings act upon themselves and thereby quasi govern themselves. His interest in these practices brought Foucault to antiquity and to a philosophical reflection which made one’s own behaviour the centre of reasoning; hence to ethics. In ancient Greek and Roman understanding this was a matter of governing the self. Exactly here lies the reference point of contemporary Foucault reading, which focuses on the technologies by which human beings govern themselves. Concretely, the aforementioned recipients of Foucault are interested in a specific form of self-governing. It is the idea to conduct one’s own life in the same way as an enterprise (cf. Bröckling, Krasmann et al. 2000; Bröckling 2007; Miller & Rose 2008). I will elaborate on this aspect later on. It is interesting to note that Foucault has only made cursory development of the notion “governmentality” and that in none of his books it played a central role. Rather the notion appears in lectures Foucault held at Collège de France (cf. Foucault 2009[2004]; 2010[2004]). These lectures became available post hum in the form of

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edited publications based on notes and transcripts. And yet, even there “governmentality” is not a systematically developed concept. In order to understand this, it is helpful to know how Foucault held his lectures. Especially in the time between the publication of the first and second volume of “The History of Sexuality” (ibid.) the lectures demonstrate a kind of search movement. He explores a number of themes, speaks about various historical times and studies several different sources. One time he discusses the problem of food shortage, of supply-security and the “freedom of grain” (Foucault 2009[2004]:30, 35), another time he talks about pastoral power which he discovered already amongst ancient Egyptians, Assyrians, Mesopotamians and Hebrews (Foucault 2009[2004]:123-124). Pastoral power is of course a model associated with the Christianity (Foucault 2009[2004]:147-161). Eventually, Foucault returns to economic issues and to a time when people began to govern in the name of reason. So he began to study economic theories of the 20th Century (Foucault 2010[2004]:75-100). However, none of these possible areas of investigation were subsequently detailed in any of his books. In fact, Foucault talks about rather tentatively elaborated issues he studied at the time. He shares his thoughts while still researching and reading source material, but he does not present readymade analysis such as he published in his books. In his own words, this reads as follows: “I am grateful to those who followed the advances and detours of my work—I am thinking of my auditors at the Collège de France—and to those who had the patience to wait for its outcome—Pierre Nora in particular.” (Foucault 1992[1984]:7)

It is hence interesting to observe the selective nature of the current Foucault reception. Almost exclusively, it focuses on a relative small part of the mentioned lectures between 1978 and 1979: governmentality. From the entire lecture series current recipients select very few meetings. What is currently recited so intensely can actually be found on very few pages: this is the analysis of neoliberalism. Primarily, Foucault mentions German authors (Walter Eucken, Wilhelm Röpke, Alfred Müller-Armack, Alexander Rüstow and others) and discusses their economic theories (Foucault 2010[2004]:129-157). In the following, Foucault relates such works to actual policies in Germany, France, the UK and the USA. Again, in a cursory fashion, he shows how these economic theories can be traced in actual political administration (cf. Foucault 2010[2004]:185-213). Especially here, Foucault does not perform a systematic analysis, but rather he presents selected examples to illustrate his thoughts. Due to their significance in the present reception, I now summarise Foucault’s thoughts about neoliberal ideas in more detail.

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2.3 C RITICISING

NEOLIBERALISM

The Foucauldian notes on neoliberal governing are extremely lucid. Even today, they still are of astonishing relevance. This is particularly remarkable when bearing in mind that Foucault spoke about neoliberalism before Margaret Thatcher (1979 – 1990) and Ronald Reagan (1981 – 1989) put it into action (Lemke 2007:72). In the current reading, Foucault is used as key witness for the criticism of a particular mode of governing that allegedly endows the individual with all liberties, but at the same time holds it responsible for everything and thereby releases the state from all duties. As a matter of fact, Foucault suggests indeed that neoliberalism is not just an economic paradigm, but that it can also be interpreted more generally (Foucault 2010[2004]:239-240). He mentions the idea of some neoliberal thinkers to conduct one’s own life like an enterprise (Foucault 2010[2004]:241). It is precisely this thought with which he hit the nerve of our times, as the current Foucault reception evidently shows. This thought is the point of reference for numerous publications which are inspired by Foucault and have become so prominent at the moment (cf. Bröckling, Krasmann et al. 2000; Lemke 2004; 2007; Rose 1999; 2007; Osborne 1993; Miller & Rose 2008; and others). However, before Foucault arrives at economic theories of the 20th Century, he discusses a series of other themes which do not only concern economic issues, but also the already mentioned Christian pastoral as a specific form of power. In a kind of associative search movement Foucault discusses certain themes and leaves them to pick up new ones. After a number of detours he returns to his studies of economic theory and he starts to lecture neoliberal positions. In particular, he introduces his audience to the thinking of German political economists also known as “ordoliberals”. He explains their position which aims at the free play of the market, but at the same time states that it is the task of the state to secure the conditions necessary for such a free play can actually fully enfold. From this perspective, the market is rather something “fragile” than something robust (cf. Foucault 2010[2004]:240). Left to itself, paradoxically the market cannot develop freely. Somebody has to look after it, so that the market is not compromised and this task is assigned to the state. Even if Foucault does not mention that explicitly it is possible to discover his interest behind his research. His interest follows a historical development in which the state became less repressive and less interventionist. How is it possible for the state to operate in a way in which it can bring about the free play of the forces and it can nevertheless still govern? This is a problem of great interest for Foucault which he now discusses using economic literature. In such a way, he addresses a dimension of power that he adds to what he had earlier analysed using criminal justice and the “truth of sex”. This form of power practice or rather, of governing, has a new quality which had not occurred in his previous books. Foucault is interested in the ideas of (neo-)liberal economists, because they suggested a mode of governing which seeks

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to act as little as possible upon the individual – but still tries to govern (Foucault 2010[2004]:133). Foucault identifies the beginning of such reasoning about the best mode of governing even earlier, in the 16th Century, and especially in the writings of economic theories of classical liberalism of the 18th Century (Foucault 2010[2004]:59). The ideal of this new quality of power is no longer the disciplinary society, but “a society in which there is an optimization of systems of difference, in which the field is left open to fluctuating processes” (Foucault 2010[2004]:259-260). The target of intervention is no longer the player (the individual), but it is the rules of the game. The significance of these theories lies in the fact that Foucault ponders as to whether such economic rationality could be used as a more general model, i.e. as a framework of analysis applicable also for non-economic areas. It is precisely this problem of governing which appeals to contemporary Foucault recipients. How is it possible to analyse practices through which human beings are governed in such a smooth and subtle way, but nevertheless governed? How is it possible to create specific behaviour using such techniques of governing? A number of scholars, such as Thomas Lemke and Nikolas Rose asked explicitly, how this is possible in the context of genetic medicine and started to apply the Foucauldian “toolbox” for their knowledgeable analysis of biosciences. The aforementioned authors focus on the state. They are interested in state action that is a certain kind of state policy, which comprises practices through which the state acts upon individuals and aims to stimulate their behaviour in very specific ways. More precisely they focus on a mode of health policy which stimulates the individual to minimise risks, to avoid health hazards, and to care for themselves instead of living off the general population. For the aforementioned authors, biomedicine is an example par excellence, because it advances precisely those principles that exactly match neoliberal health policy. By no means, do I aim to criticise the significance or quality of such contributions, which use Foucault’s thoughts as outlined above and apply them for the analysis of contemporary social issues. The fact that Foucault’s own explanations on the matter are quite short and of a rather preliminary fashion does not derogate their achievements in the analysis of contemporary neoliberal governmentality; on the contrary. Nevertheless, I would like to mention that current governmentality studies scholars do not use the entire spectrum of the Foucauldian perspective, but they just draw on a specific aspect of it. As prominent as the Foucauldian governmentality concept has become, the reception of his last two books is still underrepresented. Even before the application of the governmentality concept had become popular, a number of scholars had written about Foucault’s late works. For instance Wilhelm Schmid was amongst them (Schmid 1994[1987]; 2000[1991]; 2000[1998]). His reading of Foucault was, however, disregarded by prominent academics and was commented as merely “some kind

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of philosophy of life” (cf. Lemke 2007). In any case, meanwhile it has become almost entirely marginalised by the dominance of the governmentality perspective.

2.4 G OVERNING

GENETIC RISKS

For Thomas Lemke the category “risk” is the central element of modern genetic medicine (Lemke 2000). The significance of risk corresponds with changes in the understanding of genetic functions in the body (cf. Fox Keller 2001[2000]; Rheinberger 1997). As a consequence, this has brought about significant changes of the notion of disease (Labitsch 2002; Lemke 2003:472). Along with the shift from mono-causal explanations to more complex (probabilistic) models, genes are no longer seen as an axiomatic cause of physiological effects; hence, they are no longer seen as “unmoved movers”, but as integrated into a flexible system of biochemical interactions (Lemke 2007:159). Genetic functions are themselves influenced by cellular processes and environmental factors, which need to be understood as a dynamic system of mutual influences (cf. Novas & Rose 2000:508). The consequence of this new understanding is that genetic risks are no longer seen as fateful, but they become connected with opportunities of action and intervention (Lemke 2003:473). Lemke and others claim that such linking to action entails a logic which reads as follows: Everybody who is exposed to increased genetic risks is obliged to control these risks in order to minimise them. Therefore, Lemke talks about a new imperative of responsibility (Lemke 2007:180; Lemke 2004). Yet, together with the described individualisation of risk the state is in the process of withdrawal (“Rückzug des Staates”). Along these lines, Monica Greco (2000) also argues that from a neoliberal point of view, health becomes a visible sign of personal initiative, adaptability, dynamic, and flexibility. Health and Illness are no longer conceptualised in terms of individual luck or misfortune, on the contrary, they are objective witnesses of one’s own (in-)capability to act as a free and rational subject (Lemke 2007:56). The result of such claimed shift of responsibility from the state to the individual is interpreted a kind of self-governance of the individual (Lemke 2003:488-489). Elsewhere Lemke writes on that account: “[…] biopolitics is not only the purview of government regulation. It is also a field of ‘autonomous’ subjects who as rational patients, entrepreneurial individuals, and responsible parents (should) demand biotechnological options. Less and less frequently does the state, due to its concern with the health of the ‘people’s body’ (Volkskörper), decide who is worthy of living. Increasingly these decisions are handed over to individuals. The determination of ‘quality of life’ has become a question of individual utility, personal preference, and suitable allocation of resources.” (Lemke 2011:61)

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Hence, Lemke concludes on a general paradigm of “molecular medicine” which can be summarised as follows: 1. 2. 3. 4. 5.

The core of genetic medicine is the governing of health risks. These risks are heterogeneous and manifold. The responsibility for dealing with health risks implies a shift from the collective to the individual. The state is, however, not passive, but adopts new tasks. The “withdrawal of the state” can be understood as a reshaping of technologies of governing A new imperative emerges. It reads: minimise your risks in order to avoid living off the general population! Self-control and autonomy are central qualities of the subject which always need to be demonstrated through its behaviour and appearance.

These core analytical points, as outlined by Thomas Lemke regarding to genetic medicine (cf. Lemke 2007: 54-56; Lemke 2003) are similarly discussed by other scholars (e.g. Rose 2007, Greco 2000; Novas & Rose 2000; Rose & Novas 2005; Osborne 1993), however, not only in relation to health and biomedicine (cf. Bröckling, Krasmann et al. 2000; Bröckling 2007; Rose 1999; Rose & Miller 2008[1992]; Miller & Rose 2008). The state as political actor Lemke critically notes that in the governmentality studies literature the state is often neglected. As he sees it, often there is no attention to the question: how does the state act in order to stimulate individuals to govern themselves and how does the state control, evaluate and assess the effects of governmental action. From his point of view, it is an analytical shortcoming not to study individual strategies (e.g. to cope with genetic risks) and the effects of aggregated individual action as effects intended or at least welcomed by the state (cf. Lemke 2007:58). In order to overcome the stated deficit the adepts of governmentality emphasise that the neoliberal state does not just let things slide (laisser faire). Lemke argues that the neoliberal state is by no means indifferent towards the matters it deregulates. Firstly, the state pursues concrete goals with its withdrawal (e.g. the induction of risk minimising behaviour) and secondly, the neoliberal state aims at achieving greater effectiveness and efficiency of governing. In the case of health policy, neoliberal governing practices aim at stimulating individual behaviour in such a way that the aggregated effect results in the minimisation of the healthcare cost for the communality. The neoliberal state has to act in such a way that the individuals experience an advantage in their own behaviour. Because according to neoliberal logic, the general public will also benefit if all individuals pursue their personal interests. For that reason the exponents of governmentality studies urge to analyse governing practices of

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the neoliberal state and not “just” individual behaviour as it is performed under such circumstances. Empirical grounding In order to study the governmentality hypothesis empirically, it is necessary to collect appropriate data. Certainly, policy-documents provide an important source for discourse-analytical scrutiny. Especially white papers and other programmatic texts are prime sources in which the formulation of health policy goals can be found (cf. Department of Health 2010a; 2010b). In addition to such policy-documents also texts written by biomedical actors can be analysed for this purpose. Such texts are of a specific kind, inasmuch as they do not try to document the current state of affairs, but rather draft future developments. Lemke analyses public-relation texts in which the authors explain their research agenda, declare their intentions, make promises and raise expectations. Referring to the promissory rhetoric of such documents, Lemke notes that genetic medicine is still rather a programme than reality (Lemke 2003:485) and accordingly, he points out that his analysis deals with a “scenario”. For instance, he analyses this scenario using the internet presentation of an association that lobbies for research in the field of nutrigenetics (Lemke 2007:165). Lemke discovered a similar scenario outlined by a project consortium (formed to study schizophrenia), which he also analysed (Lemke 2007:169). It remains, however, open to what extent such images of the future become actually recited by governmental actors and consequently how they affect concrete governing practices. For obvious reasons, the analysis of such types of texts cannot explain how people actually react when they are confronted with their own genetic make-up over the course of medical action. For such purpose, empirical studies are needed that investigate very concrete experiences made by people who are engaged with genetic medicine. Using experience based empirical data can also help to overcome a second deficit of the governmentality studies approach. Lemke states on this issue, that often he misses attention to resistant behaviour of the individual (Lemke 2007:60). In other words, too often scholars try to prove the success of neoliberal governing practices without paying attention to how people try to elude governing forces and develop alternative strategies of action. A number of empirical studies produced findings which cannot easily be interpreted as the result of neoliberal health policies. Nina Hallowell (1999), for instance, showed with her study of women who were – due to their family history - faced with the decision whether or not to undergo genetic testing in order to determine their personal disposition for breast and ovarian cancer. Even though tests for a genetic disposition for breast and ovarian cancer are sometimes presented as exemplary cases for the governing of genetic risks, Hallowell rather shows that under such circumstances women make their decisions strongly influenced by their family relationships. Hallowell concludes that experiences of loss (death of mothers, grandmothers,

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sisters and cousins) shape the actions of those women she interviewed as well as they result in the wish to care for others (cf. Hallowell 1999). Rather than a cost-benefit assessing entrepreneurial self, Hallowell finds a subject that feels compelled by an ethics of care and that oftentimes puts the needs of other family members over their own (Hallowell 1999:608 see also Kerr & Cunningham-Burley 2000; Petersen & Deborah 1996; Petersen 1998). In doing so, they largely perform rather conventional gender identities (Hallowell 1999:616). In any case, it is not an “invisible hand” of maximal self-benefitting that Hallowell has found operating in this context. In his philosophical reflexion of genetic testing Wilhelm Berger points out an important aspect. The autonomous subject, as it is presupposed in the context of genetic medicine, is radically undermined in a situation in which it is confronted with the fragility of life (Berger 2006:16; Berger 2010). The autonomy status as it is needed for an “informed decision” is exactly what the affected individual has lost. Especially women do not perceive themselves as being autonomous in the context of genetic medicine. Rather they see themselves as an interdependent self. As “self-inrelation” (cf. Kenen 1994) they see themselves as a part of a complex social network, obliged to care for its members (cf. Hallowell 1999:616). Also the Canadian social scientist Susan Cox (2010) reminds us that decisions about genetic examinations can hardly be understood as being autonomously made. She notes: “Decisions about proceeding with tests that require informed consent are seldom made autonomously by the at-risk individual if this implies disregard for the impact on others. Nor are such decisions always the product of a rational calculus that involves weighing up the pros and cons of knowing (or not) one’s probable fate.” (Cox 2010:34)

Against the backdrop of her empirical study about persons who had undergone predictive testing for Huntington Disease, Cox finds interdependent subjects which are fundamentally shattered in their existence. However, Cox also reports “counter narratives” of her interviewees, used to present themselves in a way that contradicted common expectations. She writes: „People respond in many ways to the positive or negative news they receive but many actively resist the clinical imposition of a definitive new genetic status as the basis for their post-test identity“ (Cox 2010:288; Cox 1999). Cox impresses her readers with the rich and differing nature of the narratives human beings use when they speak about their experiences. However important the experiences are for these narratives, at the same time Cox argues that also narratives shape human experiences in significant ways. “Personal narratives do not merely represent illness (or other life altering) experiences, they contribute to experiences of illness including symptoms and suffering and their consequences for identity. Thus we come to be who we are, in sickness and in health, by locating ourselves

34 | H OW GENES MATTER within the repertoire of culturally available narratives that can be used to interpret and recount our experiences.” (Cox 2010:287)

This brings Cox to remind us that dominant cultural narratives of genetics and risk are caught in dualisms of Western thinking. For this reason important aspects of what make us who we are become neglected (Cox 2010:287-288). Therefore experiences of human beings confronted with genetic medicine remain unsaid and invisible. Consequently, they are also missing in social studies and ethical reflexion. For that reason Cox pleads for the opening up of narratives that tell stories about genetic medicine. This includes not only the narratives of “persons at risk for genetic conditions”, but also “the imaginative possibility […] needed in the context of our contemporary meta-theoretical reconceptualizations of the role of genetics in identity“ (Cox 2010:292). If taken seriously, this has also implications for the present study. It is accordingly my own challenge not to interpret genetic medicine solely using narratives about neoliberal ways of governing of genetic risks. Not governmentality studies In important ways, I do not frame my analysis in terms of governmentality studies. Firstly, I would like to point out that I have not tried to use Foucault in order to deduce a hypothesis from his writings or lectures. Rather I have tried to answer the research questions as outlined in the introductory chapter using empirical methods of social inquiry. These methods require a general openness and reject starting with a preformulated hypothesis. On the contrary, the development of theses is already seen as a result of the analysis, which always needs to be grounded in the collected data (cf. Strauss & Corbin 1996:7). It follows from there that I do not presuppose a governmental agenda that would try to establish a neoliberal health policy by means of genetic medicine. In fact, in both medical fields analysed in this study (prenatal testing and newborn screening) the state acts rather as an agent of a paternalistic health policy. I will show that at least in the Austrian context this is so. In contrast to health policy, in the context of science policy there is more evidence of neoliberal modes of governing. Secondly, I do not interpret the empirically observed subjectivisation practices of persons confronted with genetic medicine as a variation of an “entrepreneurial self”. Instead, I argue that the ways in which parents and especially women constitute themselves as subjects in the context of prenatal testing and newborn screening are in significant respects performed as an alternative to a subject that makes autonomous decisions in order to maximise individual benefits. Finally, I would like to forestall a possible criticism of “theoretical isolationism” (Lemke 2007:64) by pointing out that I do not exclusively use a governmentality studies perspective when discussing my findings. On the contrary, each of the spe-

S UBJECTIVISATION

AS THEORETICAL FRAMEWORK

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cific aspects of the problem under investigation will be discussed in relation to relevant literature. In particular, I review the “geneticization thesis” of Abby Lippman (1991, 1994), Sheila Jasanoff’s (2005) analytical concept of “civic epistemology”, the interactionist perspective of Irwin Goffman (1959, 1981) as well as methodological literature and sociology of science literature on the relationship between science, politics and the public (cf. Irwin 2006; 2008; Wynne 1996a; 2002; 2006; Felt 2002; Felt, Fochler et al. 2003a; Felt, Fochler et al. 2008). In such a way, I try to do justice to a broader reading and to carry out an analysis of subjectivisation practices in the context of modern genetic medicine using a more comprehensive perspective.

3 Methodology

3.1

A PPROACH 1

Investigating ethical, legal and social aspects of genetic testing implies a decision about the approach taken when problematising modern genetic medicine. The focus of scrutiny lies on what is applied in medical practice here and now as opposed to what is so far “only” the object of research. It is certainly an important task to anticipate future developments and to prospectively assess possible effects (for instance in the tradition of technology assessment; cf. Grunwald 2007). As a matter of fact, a significant part of ELSA research tries to problematize modern genetic medicine already in the context of knowledge production. The term “upstream approach” signifies this attempt (cf. Wilsdon & Willis 2004). Nevertheless, in the present study, I have chosen an approach that favours the scrutiny of contemporary changes in genetic medicine (both in research and clinical practice) over the analysis of hypothetical scenarios of the future. I shall explain the reasons why I decided to take this approach. First of all, there are methodological reasons for the chosen approach. It is possible to use empirical methods for the investigation of ethical, legal and social implications of genetic medicine when studied in the context of their application. It is possible to observe and interview human beings with tangible experiences, whereas anticipated effects of biomedical research can only be analysed on the basis of future scenarios. From a methodological point of view this fact has a significant consequence: the results of such future scenario based analysis are only of a hypothetical

1

This section appeared in an earlier version as part of an article published under the title “Genetisches Testen: ELSA im Kontext medizinischer Anwendungen” in the special issue 10/2010 of “Österreichische Zeitschrift für Soziologie” (Wieser 2010b:139-167) and has been printed here in a revised version “with permission of Springer” (the publisher) to reuse the material (License Number: 3920700546608). I am the author of the original publication.

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quality. Sheila Jasanoff makes a similar point and notes that investigations of this type are limited in their capacity to transcend their framing assumptions (Jasanoff 2003b:239). The fact that it is difficult to foresee how human beings feel and react when they are actually confronted with genetic medicine (for instance over the course of genetic testing) highlights the advantages of the empirical investigation of tangible medical practices (cf. Marteau & Richards 1996). Researchers who seek to ask their informants how they would act in an imaginary situation face similar methodological problems. It is well known that hypothetical questions can hardly foresee how human beings actually behave when they make concrete experiences (cf. Schnell, Hill et al. 2005; Meinefeld 2000:267). Empirical social inquiry can help to demonstrate the differences between the articulation of intended and factually performed actions (Borry, Schotsmans et al. 2004:45). It is, however, necessary to acknowledge that the problematisation of possible developments is indeed highly relevant, since the negotiation of such possible futures are subject to substantial controversies in the political domain. Bioscientists are themselves actively involved in such strategic processes, since they explain the utility of the human genome research. Yet, ELSA researchers are not simply neutral observers or disengaged commentators, but they are also actors in the process by which the shaping of genetic medicine in research and applied practice is negotiated (cf. Berger 2008, Hope 1999:220). The second reason emphasises the advantage of scrutinising existing medical practices. This is because changes in medicine do not only take place via the implementation of new, previously non-existent research areas (such as the results or stem cell research of synthetic biology), but change also take place in routine practices. For example, empirical investigation of prenatal testing and newborn screening show fundamental changes in medical practice alongside the technological innovation in long established areas of medical practice. For that reason alone it is imperative to analyse how new technologies contribute to the re-organisation of medical practice and consequently how they prompt ethical and social challenges in new ways. Finally, I would like to recall arguments of bioethicists who propose considering empirical investigations for philosophical analysis. Biernbacher, for instance, notes that integration of empirical studies in ethical theory building is especially recommendable when the latter is supposed to be implemented (Biernbacher 1999:320). This approach has become known as “empirical ethics”. The bioethicist Søren Holm (Holm 2005:13; Holm 2003:8) sees the role of social scientists especially in the provision and assessment of premises for ethical reasoning. Others rather see their contribution in the description and examination of moral questions as well as in the evaluation of ethical decision making (Borry, Schotsmans et al. 2004:44). However, the way in which arguments produced by social scientists may be used appropriately, is controversial amongst philosophers. Bert Molewijk points out that many traditional philosophers emphasise the logical impossibility of deducing normative judgements

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from empirical data (Molewijk 2004:87). On occasion, social scientists are accused of drawing “naturalistic fallacies”, i.e. they would incorrectly conclude from “what is the case” to “what should be”. In order to preclude possible misunderstandings, I would like to note that in this study, I neither draw normative conclusion regarding genetic medicine, nor do I discuss issues concerning ethical principles and how they are supposed to inform regulations of clinical practice. By contrast, this social inquiry aims to understand the changes in prenatal testing and newborn screening as they have occurred without drawing normative conclusions from such analysis. When ethical problems are addressed in these medical areas, the purpose is always to carve out the perspectives of actual persons who are engaged with the context under investigation. It is not my intention to judge, whether or not these views can sustain bioethical reasoning. For social scientists who use empirical methods the statements of their interviewees do not require any justification of this type. Rather it is important to understand the perspectives of the interviewed persons regardless of the views and opinions of the investigating researcher. It is irrelevant whether the interviewer perceives the statements of the interviewees as justifiable or not. This fundamental respect for the perspective of the interviewed person must not be mistaken with normative conclusions which can be drawn in the field under investigation. Of course, social scientists need to evaluate whether the answers they receive from their interviewees are influenced by “social desirability”. They need to reflect on the performative benefits of interview statements as well as on the strategic goals they may pursue. Engaging in a methodological reflexion is indispensable for social inquiry. Bioethicists who use empirical studies for their argumentation have also noticed the need for that (cf. Holm 2003).

3.2 P RESUMPTIONS ,

EXPECTATIONS AND DEEPER UNDERSTANDING

The scrutiny of societal issues requires some degree of prior knowledge about the investigated field (cf. Charmaz 2006:165). Without such initial understanding it would actually be impossible to recognise critical issues and to construct relevant research questions concerning this matter. The practical challenge for the researcher is to find a solution for the integration of such prior knowledge. According to the classical deductive-nomological research paradigm existing knowledge should be used in order to generate hypotheses which subsequently can be empirically validated (cf. Strauss & Corbin 1996;32). This approach has been criticised many times (cf. Meinefeld 2000:265). Exponents of qualitative social inquiry argue that for the scrutiny of societal issues an alternative approach is needed. Hence, qualitative researchers regard it as inadequate to follow an epistemology as is used for the natural sciences which implies the validation of hypotheses. Consequently, it is a fundamental

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decision whether to pose hypotheses at the outset of the research process or, methodologically grounded, deciding not to do so. Constructing hypotheses before entering the field is rather unusual when deciding to follow a qualitative approach of social inquiry (Lamnek 1995b:10, 22, 139; Strauss & Corbin 1996:32; Meinefeld 2000:267; Charmaz 2006:169). Moreover, the goal is to approach the field under investigation without any presumptions. Therefore, the construction of hypotheses is seen as an integral part of the on-going research process. Following the qualitative research paradigm, the methodological approach used for this study refrains from anticipating how subjectivisation is actually performed in practice. In accordance with Brüselmeister (2000:236), I argue that the research process applied to this study was guided by the data and not by readymade theoretical presumptions before entering the field. Openness and willingness to revise preliminary interpretations during the entire research process are essential for qualitative inquiry (Brüsemeister 2000:54, Strauss & Corbin 1996:11). Of course, this does not mean that social scientists enter the field in complete ignorance or without detailed planning of the research process. Also the study at hand is informed by the literature on the topic and by experiences of the author gained during more than eight years of ELSA research. Furthermore, Phillips and Hardy recommend paying particular attention to the social context of the problem under investigation which not only informs the interpretation, but also needs to be reflected in the research design, especially how it constitutes the research questions under investigation (Philips & Cynthia 2002:6). Quite obviously, the point in time while I am writing these lines is long after the empirical phase was completed. By now, I have tested the hypotheses I developed on the grounds of empirical data. Arno Bammé pointed out that scientific knowledge production and the communication of research findings require two crucial competencies, but they often do not follow the same logic (cf. Bammé 2003:453-464; 478). Indeed, I have chosen to present the research process and its findings in a different order than they were produced. In particular, I provide the reader with a theoretical framework before I discuss my findings, which does not reflect the moment in time when the literature was actually consulted for analysis (cf. Charmaz 2006:164). In addition to the decision on where to place relevant literature there is another choice to be made about the framing of the research process. This choice is, however, not only a matter of presentation, but also one of methodology. Framing research in terms of hypotheses implies an argumentation aiming at the validation of these hypotheses. The point is that such procedure stands in considerable contrast to the qualitative paradigm (Brüsemeister 2000:194). For that reason, I follow the principles of qualitative social inquiry also in the presentation of the research findings (cf. Charmaz 2006:166; Alasuutari 1995:182-183; 169). Even though – or rather, precisely because I apply a qualitative approach – the problem remains how to integrate pre-existing knowledge, theoretical literature and

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empirical findings of other researchers into one’s own research. The radical suggestion, to enter the field without any presumptions may be an important methodological principle to secure interpretative openness; in practice, however, this principle often turns out to be illusionary and epistemologically unjustifiable (cf. Meinefeld 2000:268-269). Quite obviously the consideration of relevant literature contributes to the quality of empirical research. This is true not only when writing up empirical findings, but also at the outset, when conceptualising and planning empirical research (cf. Brüsemeister 2000:195). Strauss & Corbin point out that previous experiences and theoretical knowledge are important for qualitative inquiry (Strauss & Corbin 1996:4; Brüsemeister 2000:191). There is, however, an important difference to how literature is used in deductive-nomological research. According to Strauss & Corbin literature should neither be used to construct an analytical framework that informs data interpretation nor to presuppose the relation between observed variables. Whereas deductive-nomological researchers need to know which variables are of interest to them and how they are going to interpret their findings at the outset, qualitative research in general and grounded theory in particular do not start out with preconceived categories (Charmaz 2006:169; Alasuutari 1995:169). The crucial point of this approach is that analytical categories are only developed during the research process and they always need to be grounded in the acquired data. For that reason analytical presumptions are rather seen to hamper new discoveries (cf. Strauss & Corbin 1996:32). Literature is therefore used in a different way. It is especially used a) to stimulate interpretation (“theoretical sensitivity”), b) as secondary data, c) to generate questions relevant during the research process, d) to inform data acquisition (“theoretical sampling”), and e) to confirm and substantiate preliminary findings (cf. Strauss & Corbin 1996:3335). In any case, before research findings are discussed in relation to relevant literature they need to be confirmed on the grounds of empirical data first. At this point, it is necessary to briefly explain the circumstances under which I have carried out the research as discussed in this study. The entire empirical material used for the present analysis, was produced over the course of three research projects, each funded by the Austrian Genome Research Programme GEN-AU.2, In order to 2

The projects mentioned had the following titles: 1) “Prenatal Testing: Individual Decision or Distributed Action?”, 2) “Genetic Testing: Diffusion–Frameworks of Application–Identity and Ethical Reflection”, and 3) “Doing ELSA: an Empirical Study of ELSA Research in Practice”. Together, these projects constitute the basis of the present study. In their framework several research questions regarding genetic medicine were studied in great detail over the course of eight years of contract research. The projects were funded by the Austrian Genome Research Programme GEN-AU and part of the so-called “‘Accompanying Research Programme ELSA’ within the ‘Austrian Genome Research Programme GENAU’”. The research team of the project on prenatal testing consisted of Sandra Karner,

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obtain funding, it is necessary to write grant proposals in which it is not only essential to outline and justify the precise course of action during the research process for assessment by an international jury, but the applicant also has to review the state of the art in the given field. Hence, under such circumstances, the demonstration of previous knowledge is a funding requirement. In conclusion, the requirements of grant proposals do not favour approaches which postulate full abstinence from theoretical presumptions (cf. Charmaz 2006:166). However, it can be argued that prior knowledge does not necessarily preclude new insight. Werner Meinefeld notes that: “openness for the new does not depend on ignorance of the old and already known, but it depends on how the search for the new is methodologically organised (Meinefeld 2000:272, translation BW). Accordingly, it is important to explicate and reflect on pre-existing knowledge rather than leave it unattended. I have tried to remain as open as possible in order to allow identification of nonanticipated insights. The fact that my own findings, do not always conform to the previously discussed literature (see chapter 2) may confirm the success of this attempt. However, my prime intention is not to prove certain scholars wrong. For this purpose, I use a “dramaturgy of presentation” that is geared towards a deeper and more differentiated understanding of empirically gained findings, rather than the validation of hypothesis or the falsification of existing literature. I would like my study to be seen as a contribution to science and technology studies, aiming to elaborate and deepen the current analysis of genetic medicine in research and application. One of the most compelling experiences of empirical research is that it has the capacity to change how one thought about the field before having studied it.

3.3 S AMPLES 3 The empirical basis of the present study was produced within the framework of the Austrian Genome Research Programme GEN-AU over the course of the three already mentioned consecutive research projects. Pulled together, the collected material is organised according to three groups of actors: a) “patients and clients”: persons who Marti-na Ukowitz, Michaela Jahrbacher, Wilma Mert, Wilhelm Berger and Bernhard Wieser. The team working on the newborn screening project as well as on the project called “Doing ELSA” consisted of Sandra Karner, Daniela Freitag, Wilhelm Berger and Bernhard Wieser. 3

Sample, data collection and analysis were already published separately in publications reporting on the findings of the corresponding research projects (cf. Wieser, Karner et al. 2006b; Wieser, Karner et al. 2006c; Wieser, Freitag et al. 2008; Wieser 2011e; 2011d; 2011b). Here I have compiled this information in order to provide a better overview for the purpose of this comprehensive study.

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are confronted with genetic medicine, b) “professionals of genetic medicine”: bioscientists and physicians who research or apply genetic medicine in their professional activities, and c) “ELSA researchers”: social scientists and their colleagues from the humanities who study ethical, legal and social aspects of genetic medicine. Table 1: Samples of the study three groups of actors Professionals of genetic medicine 55 30 55 : (4)4 12 : 18 A A prenatal testing, human genetics, newborn screening gynaecology, paediatrics, pneumology, oncology, pathology, laboratory medicine patients and clients

N ♀:♂ Countries Experience and expertise

method of data collection

narrative interviews

expert interviews

ELSA researchers 47 23 : 24 NL, UK, DK, A sociology, philosophy, anthropology, political science, psychology, communications, history, public helath, biology, engineering expert interviews

According to these three groups of actors, I distinguish three sets of data. The first set of data consists of a sample of 32 qualitative interviews with women who gave account of their experiences with prenatal examinations. These interviews were conducted by Bernhard Wieser and Sandra Karner (Wieser, Karner et al. 2006b). In addition, 23 qualitative interviews with parents of children diagnosed with Cystic Fibrosis (CF) were performed. These interviews were carried out by Daniela Freitag who was a member of the research team of the respective project (Freitag 2010a). The transcripts of these interviews were available to the principle investigator of the empirical analysis who is the author of the present study. Taken together these interviews constitute a set of data informing the analysis of the perspectives of human beings who were confronted with genetic medicine in the context of prenatal testing and newborn screening.

4

In four interviews with women their partners were also present during the conversation.

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A second set of data consist of qualitative expert interviews with professionals of genetic medicine. Included in this group of actors are specialists of genetic medicine both in research and clinical practice. Altogether, 30 interviews with exponents of this group of actors were carried out. Most of these interviews were conducted by Bernhard Wieser, a smaller part was performed by Sandra Karner and Daniela Freitag (Wieser, Karner et al. 2006c; Wieser, Freitag et al. 2008). The third set of data consists of qualitative interviews with researchers in the humanities and social sciences who are engaged with the study of ethical, legal and social aspects of genetic medicine. This third sample contained researchers from ten different academic disciplines. All 47 interviews with this group of actors were conducted by Bernhard Wieser (cf. Wieser 2011d; 2011a; 2011b). In accordance with the principles of qualitative inquiry Kluge suggests to aim at “theoretical representativity” (Kluge 1999:47) for the investigation of small samples, especially when the choice of interviewees is not randomised, but instead aims at achieving greatest diversity amongst the persons invited to a conversaton. The analysed data were obtained using two forms of qualitative interviewing: narrative interviews (Hopf 2000; Brüsemeister 2000) and expert interviews (cf. Bogner, Littig et al. 2005[2002], Meuser & Nagel 2005[2002]. 3.3.1 Patients and clients The sample of persons who reported about their experiences with genetic medicine can be divided into two sub-groups. The first sub-group was interviewed about prenatal examinations and the second about newborn screening. The 32 women, who were invited within the framework of the research project on prenatal testing5 had between one and five children and were between 18 and 40 years old during their pregnancies. Eight women were pregnant at the time of the interview. All women had experiences with ultrasound examinations, 17 said they also had nuchal translucency measurement (NT) (cf. Nicolaides, Azar et al. 1992b:867), and six women said they underwent a so called “combined test” (cf. Orlandi, Damiani et al. 1997:381). Seven Women reported about their experiences with organ screening and four more said, they were offered such examinations, but refused to have them. Five women said they had amniocentesis (cf. cf. Carter 1976); one of which also had a chorionic villus sampling (CVS) previous to the examinations (cf. Liu 1992:54). Five women were confronted with conspicuous or positive results. Using amniocentesis, the presumed chromosomal anomaly could be ruled out in four cases but was confirmed with a balanced chromosomal anomaly in one case. One woman said, a severe malformation 5

The project was entitled: “Prenatal Testing: individual decision or distributed action?” and was funded by the Austrian Genome Research programme GEN-AU. The project was carried out from January 2004 until March 2006.

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was discovered using ultrasound, but she had nevertheless decided to give birth to her child. Another woman said, at first her foetus was identified with a heart failure, which could later be ruled out (Wieser, Karner et al. 2006b). For the recruitment of these interviewed women, flyers and posters were distributed in various support facilities for pregnant women. Amongst these facilities were information centres for families and women, parent-child centres, birth clinics, and selected surgeries where pregnant women can undergo prenatal examinations. In order to expand the scope of potential interviewees, flyers and posters were also distributed in a number of facilities and training centres for children with special needs. As a result of this recruitment strategy in more than 15 facilities in and around Graz altogether 19 women contacted the research team. Following up on this initial contacts, 17 interviews could be arranged (Wieser, Karner et al. 2006b). These women were asked to help approach other possible interviewees. Using this “snowballing” method another 15 interviews were carried out. Interviewees recruited through snowballing spoke more positively about their experiences with prenatal examinations. By trend, women, who had responded to the flyers and posters showed stronger motivation to speak about experiences they disliked. Using both of these recruitment strategies proved to benefit the diversification of the sample and therefore resulted in the observation of a broader spectrum of women’s experiences (cf. Brüsemeister 2000:218). It was also striking that none of the interviewed women reported about an abortion following prenatal testing. The reasons are likely to be a result of the recruitment strategy which focused on facilities for women either pregnant or already given birth. Even snowballing has not helped to find women who were willing to talk about their abortion. My interpretation of this situation is that the obtained sample indicates a certain moral connotation of abortion and the attached feelings of guilt and shame. It remains an important task for future research to study the situation of women who decided the interruption of their pregnancy to be the best solution for them (cf. Wieser, Karner et al. 2006b). As a consequence, I have focused on the analysis of the experiences of the more common cases where prenatal examination do not lead to conspicuous results and how this is reflected in the ways in which these women construct their subjectivity. The interviews were carried out in 2005 (June to December) and were between 30 and 90 minutes long. In a subsequent research project,6 parents of children with cystic fibrosis (CF) were invited to narrate their experiences. During four of altogether 23 interviews with mothers of such children the father of the children was also present. The interviewed parents were between 25 and 60 years old when they were interviewed. None of the 6

The project was entitled “Genetic Testing: Diffusion–Frameworks of Application–Identity and Ethical Reflection” and was funded by the Austrian Genome Research programme GEN-AU. The project was carried out from February 2006 until March 2009.

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interviewed women had more than two children, but five of them had two children with CF. All interviewed women lived in a relationship, although not all of them lived with the biological father of their children (Freitag 2010a:113). Cystic fibrosis was included into the Austrian newborn screening programme in 1997 (Eichler & Stöckler-Ipsiroglu 2001:1316). Amongst the interviewed persons were parents whose children were diagnosed within the framework of the newborn screening programme as well as parents whose children were diagnosed on the basis of observed clinical symptoms. The initial recruitment strategy used flyers and posters in relevant medical facilities. Unfortunately this strategy did not lead to success. Much more success was achieved when personal contact was established during meetings of self-help and patient groups. Geographically there was a focus on the following Austrian provinces: Upper and Lower Austria, Vienna, Carinthia and Styria. The visited self-help groups were initially contacted by mail and asked whether it was possible to give a presentation on the intended research. In such a way parents could be recruited for an interview and snowballing helped arranging more. Nevertheless, the distribution of flyers and posters did help the recruitment indirectly, since a number of interviewees said they had noticed them. However, it became obvious that flyers and posters alone are not sufficient to motivate parents to contact a research team on their own initiative (Freitag 2010a:112). Finally, another successful recruitment strategy was the publication of a short article in the magazine of a patient group (“Leben mit Cystiser Fibrose”) (Freitag 2008:10). This strategy contributed to the recruitment of more interviewees. The interviews were carried out between December 2007 and September 2008 and were on average 84 minutes long. 3.3.2 Professionals The sample of the second group of actors investigated in this study consists of 30 professionals of genetic medicine. To this group, I count physicians who carry out genetic tests or treat individuals with genetic conditions as well as scientists who carry out biomedical research. The main recruitment criterion was the expertise of the interviewees in the field of genetic medicine. Prenatal testing and newborn screening were crucial in this regard. However, also experts of other medical disciplines were interviewed if they carried out genetic tests or treated genetic conditions. The following disciplines were included: human genetics, gynaecology, paediatrics, pneumology, oncology, pathology as well as specialists of laboratory medicine. Since about 80% of all genetic tests are carried out in order to identify pathogenic agents of infectious diseases, also experts of this field were interviewed (cf. Wieser, Freitag et al. 2008:190).. Most of the interviewed experts worked in specialised public hospitals which, apart from treating patients, also carry out research. However, four of

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the interviewed professionals worked in private medical organisations or small surgeries (“niedergelassene Ärzte”). The group of experts working in the field of prenatal testing is relatively small in Austira. This is especially true for invasive methods of prenatal testing; i.e. for amniocentesis and chorionic villus sampling. Diagnoses based on such medical interventions are only performed in a few specialised centres of which those in Graz, Innsbruck, Linz and Vienna are the most significant in Austria. A number of other hospitals extract genetic material, but need to send it to specialised centres for analysis. Genetic tests are carried out by specialised physicians at these centres. However, various bioscientists concerned with both medical diagnostics and research also work in these institutions. Despite their expertise in genetic medicine, bioscientists are not allowed to carry out genetic counselling (as is required for informed consent prior to genetic testing). In Austria, this task is reserved for physicians. Meanwhile prenatal testing has changed significantly due to the introduction of non-invasive methods. Especially ultrasound examinations (nuchal translucency measurement) and the combined analysis of maternal serum (combined tests) are should be mentioned in this regard. In Austria, such non-invasive prenatal tests are carried out by gynaecologists. For that reason, specialists with expertise in these non-invasive diagnostic technologies were added to the sample of professionals in order to study recent trends in prenatal testing. The entire Austrian newborn screening programme is carried out in one centre. Because of the rather low incidence of the screened diseases this is important in order to achieve high diagnostic quality. Follow up examinations and the treatment of diagnosed infants are also carried out in other hospitals. Nevertheless, the group of specialists working in this field is rather small in Austria. As a result of these circumstances, the interview sample is also small. The advantage, on the other hand, is that it is relatively easy to comprehend the field in Austria and to contact all of the relevant institutions. The interviews carried out between March 2004 and September 2007 were between 45 and 90 minutes long. 3.3.3 ELSA researchers The sample of the third group of actors comprises ELSA researchers from the Netherlands (12), the United Kingdom (14), Denmark (10) and Austria (11). Within the framework of the project “Doing ELSA”,7 I have interviewed researchers in these countries who investigate ethical, legal or social aspects of the biosciences within the framework of their national funding structures. However, I only chose individuals 7

The project was entitled: “Doing ELSA: an empirical study of carrying out ELSA research in practice” and was funded by the Austrian Genome Research programme GEN-AU. The project was carried out from September 2009 until August 2011.

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who had directly interacted with bioscientists or physicians over the course of their research. The fact that the interviewed persons could draw on their own experiences as ELSA researchers was a crucial recruitment criterion. Nevertheless, I tried to cover the entire scope of the research landscape in these countries. The reasons why I interviewed ELSA researchers not only in Austria, but also in the chosen countries are the following: the United Kingdom and the Netherlands have launched the largest ELSA programmes (even though the United Kingdom has chosen not to use ELSA as a label to name its respective ESRC centres). Denmark on the other hand, allows for an interesting comparison due to its very strong traditions in participatory processes. Also in Denmark research on the ethical, legal, and social aspects of genetic medicine is well established even though not organised in a specific national research programme. The choice of interviewees has made it possible to construct a balanced sample. The sample was constructed to achieve greatest diversity of perspectives. I also tried to balance the sample with respect of gender, academic seniority, disciplinary backgrounds and institutional affiliation. I have interviewed researchers from 23 different institutions with 10 different academic backgrounds (sociology, philosophy, anthropology, political science, psychology, communication science, history, public health, biology and engineering); amongst them 23 were female and 24 male, 8 PhD-students, 17 post-docs, 15 assistant or associate professors and 7 full professors. However, there were more interviewees holding university positions as there were researchers of extramural research institutions. This, however, corresponds with the proportions of the ELSA research scene. For recruitment purposes interviewees were chosen from project lists of the respective national ELSA programmes or centres. Having had the privilege to visit the chosen countries was beneficial to obtain contextual information applied to balance and diversify the sample according to the aforementioned criterion (cf. Brüsemeister 2000:218). Researchers were approached by e-mail and have generally agreed to an interview without reservation. The interviews were carried out between April and September 2010 and were between 50 and 110 minutes long.

3.4 D ATA C OLLECTION 3.4.1 Recording and data-management At the beginning, the interviewees were explained the interview purpose and process of the conversation. Furthermore anonymisation of the data was assured. On this basis, all interviewees were asked for their consent to the use of the interview for the described research purposes (cf. Brüsemeister 2000:158; Hermanns 2000:361). With

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one exception, all interviews could be recorded. Two persons refused to give an interview when meeting with the interviewer at the agreed time. According to their wish, both of these persons were withdrawn from the sample. The collected interview data were fully transcribed verbatim, using the bellow outlined transcription rules (cf. Küsters 2006:75; Meuser & Nagel 2005[2002]:83; Brüsemeister 2000:165-166; Kowal & O'Connell 2000). For better data management the computer software atlas.ti was used, which proved to be beneficial for the interpretation process.

Table 2: Transcription rule Incomprehensible statement Statement not understood with full certainty Nonverbal articulation or interferrence during the interview Incomplete sentence Annonymisation of place, institution or individuals etc. Verbal emphasis Duration of speech pause in seconds

[...] [diagnoses] [coughs] ... (institution) really (5)

3.4.2 Guideline based qualitative interview The prime method for data collection was guildeline-based qualitative interviewing (cf. Schmidt 2000; Hopf 2000; Meuser & Nagel 2005[2002]:77). The guideline was produced according to the research questions of the corresponding research projects, continuously improved, and adjusted according to the given scope of experience or the particular profesional expertise of the interviewed persons, respectively. Interviews with individuals who were asked to explain their experiences with genetic medicine (patients and clients) were conducted as narrative interviews complemented by a longer section of guideline-based follow up questions. For interviews with professionals in the field of genetic medicine and ELSA researchers it was necessary to collect informaton about their jobs and institutional affiliation. For that purpose information accesible via internet was used. If available, relevant publications by the interviewees were studied. Regarding the preparation of interviews with ELSA researchers this phase was significantly enhanced by longer visits of the alreadymentioned countries. In addition, ELSA researchers were always asked to explain the local context of ELSA research in their respective countries. It was especially important for the interview to follow the interviewee’s thoughts and pick up situative twists of the conversation (cf. Fontana & Frey 1994:366).

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Telling stories about experiences The first group of actors (patients and clients) were encouraged to tell the story about their experiences with genetic medicine. Such narrative interviewing follows Fritz Schütze, who developed this form of data collection (cf. Hopf 2000:355). Posing a “narrative generating question” this method prompts the interviewee to produce a self-determined “main narrative”. Only subsequently, when follow-up questions are being asked, do the interviewers engage more actively in the conversation and ask open questions which aim to stimulate the interviewees to narrate more (cf. Hopf 2000:356). The goal of such interviews is to analyse orientation structures of action as well as retrospective interpretations of the narrated actions (cf. Lamnek 1995a:71). Special attention was paid not only to rational action motives, but also to emotional experiences of the recounted situations. Careful preparation of an interview guideline for follow-up questions proved to be helpful in this regard (cf. Brüsemeister 2000:127). It should be added that the “narrative generating question” did not invite the interviewees to frame their experiences in terms of their life-story as it is common when using narrative interviews in the context of biographical research (cf. Brüsemeister 2000:117, 127, 160; Freitag 2010a:115). Rather, the interviewers asked their interviewees to report on specific experiences. Nevertheless, a number of the interviewees gladly contextualised their story within their own lives by their own initiative. However, they did not tell their entire life story but rather the particular situation of their lives when they were offered, underwent or were told the results of genetic examinations. Due to the fact that the interviewed persons were not asked to frame their experiences in terms of their biographies, the given narratives were relatively short. On average they were about 5-10 minutes long. Against this backdrop the combination with a subsequent phase of guideline-based interviewing proved to be beneficial (Hopf 2000:353, 358). Biographically oriented research projects generally focus on identity changes (for instance on traumatic experiences) and often assume the “decline of the biographical self”. Such decline is suggested to be the result of experiences in involuntarily engaged situations or the result of unexpected consequences of one’s own behaviour (cf. Brüsemeister 2000:141-143). With this study, I show that in the context of genetic medicine a transformation of identity does not always happen nor necessarily happen at all. Also deliberate attempts to maintain one’s previous identity can be observed. Of course, affected individuals experience the diagnosis of a genetic anomaly as a caesura. Therefore, I elaborate on both of these possibilities (see chapter 4 and 5). Interviewing experts Nonetheless, guideline based interviews were used for all the three aforementioned groups of actors. Two of these – professionals of genetic medicine and ELSA researchers – were conceptualised as experts. The application of the guideline-based

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qualitative interviews for such types of actors implies some specific methodological challenges (Meuser & Nagel 2005[2002]:71). For this reason Michael Meuser and Ulrike Nagel define expert interviews as an independent qualitative method (Meuser & Nagel 2005[2002]:72; also Bogner & Menz 2005[2002]:39). However, the specific quality of expert interviews lies not in their guideline based form or in their orientation on the qualitative paradigm, but it consists of the construction of knowledge as expertise (Bogner & Menz 2005[2002]:34). Expertise is the coproduced result of ascriptions by the interviewer and self-definitions of the interviewee (cf. Meuser & Nagel 2005[2002]:73). Nevertheless, as Alexander Bogner and Wolfgang Menz note, social scientists are not free to treat anybody as an expert, but their expertise must be publicly acknowledged; for instance through publications, media presence, professional position etc. (cf. Bogner & Menz 2005[2002]:41). In the present study, expert status was defined through professional experience with genetic medicine. However, it can be criticised that in such a way expertise is reduced to professionalism (cf. Bogner & Menz 2005[2002]:42), I would like to note that I do not aim to provide a general definition of expertise, but to explain who was acknowledged as an expert in the analysed sample. The problem with such definition is that the notion of expertise loses its discriminatory power. Bogner and Menz point to a crucial fact: It is not the exclusive quality of knowledge that makes experts sought-after interviewees, but it is the effectiveness of their knowledge (Bogner & Menz 2005[2002].45). Accordingly, it is the social relevance of knowledge which constitutes expert status (Bogner & Menz 2005[2002]:43). The crucial point is that due to their position experts can assert their claims. Through the efficacy of their knowledge, experts pre-structure the conditions on basis of which others can act in their domain (Bogner & Menz 2005[2002]). In this respect they are significantly different from the first group of actors (patients and clients) dealt with in this study. The views of experts are not constituted by their experiences as being affected by genetic medicine (or their individual biographies), but in the given case of this study they are involved in the production of specific bioscientific knowledge and its application in medical contexts (cf. Meuser & Nagel 2005[2002]:91). One of the characteristic features of expert interviews is that they contain “interaction effects”, which are often perceived as disruptions. Bogner and Menz, however, plead to understand these effects as constitutive elements of expert interviews expressing the social character of data collection rather than as uncontaminated recovery of a “treasure of knowledge” (cf. Bogner & Menz 2005[2002]:36). They also argue against the positivist ideal of representation of reality. Also, and particularly so, expert interviews are constructions of meaning. Bogner and Menz point out the directedness of interview statements. Both context and goal of the interview are always in the back of the interviewees’ minds (Bogner & Menz 2005[2002]:48). Just as much as interviewees try to get an idea of who they are dealing with; especially

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regarding a) competence and disciplinary background, b) normative orientation, attitudes in relation to the issue under investigation as well as c) potential of action and influence of the interviewer in relation to the domain (of action) of the interviewee (Bogner & Menz 2005[2002]:49). Against this backdrop, Bogner and Menz state that interview statements are always a function of the communication structure, too.

3.5 A NALYSIS Analysing the collected data, I used methods of qualitative inquiry in the tradition of interpretative sociology (cf. Glaser & Strauss 1967; Schmidt 2000; Flick, Kardorff et al. 2000b; Lamnek 1995b). In particular, I follow Christiane Schmidt’s suggestion for qualitative analysis of guideline based interviews in five steps (Schmidt 2000). Starting with in-depth reading of the interview transcripts, I developed preliminary analytical categories. These categories were based on thematic aspects or themes extracted from the empirical material and relevant for the specified research questions (cf. Schmidt 2000:450). Appreciating the principle of general openness, I deliberately tried to overcome preconceived assumptions in order to discover new aspects in the data. In such a way, I tried not only to analyse sections of the transcript that were relevant for the posed research questions, but also to pay attention to aspects which were not already explicated in the study design of the corresponding research projects. The developed categories are still flexible at this stage of the analysis and need continuous improvement. It is however essential to produce written drafts of the analysis as well as to outline first empirically grounded hypotheses in relation to the analytical categories and the corresponding interview passages in the form of memos or annotations. In the second step, I summarised the developed analytical categories in the form of an “analysis guideline”. I spelled out how to exactly apply them in order to enhance precision while using them. Before actually applying my “analytical guideline”, I have tried them out, tested their “discriminatory power” and revised them once more as Christiane Schmidt recommends (Schmidt 2000:451). With this conceptual tool I have coded the interview transcripts step by step with my analytical categories, in a third step. According to Schmidt “coding” means to assign relevant text passages of the interview to an analytical category. Also at this stage of the process, it was important to adapt and revise the analytical categories if necessary (Schmidt 2000:452). Already during the coding process recurring themes could be identified. Later on, I drew on these dominant themes for an in-depth interpretation (see step 5). It is worth mentioning that this form of coding differs from what Glaser and Strauss call “theoretical coding” (cf. Glaser & Strauss 1967; Böhm 2000). As Schmidt explains, in grounded theory the notion “coding” is used in order to denominate the process of data based theory development (Schmidt 2000:454).

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Subsequently, in the fourth step of the analysis, the coded interview passages were put together in a table for a comprehensive overview. Here those analytical categories which were most suitable to answer the research questions were selected. This step of the analysis can be seen as an important condensation, again focused on the research questions and recurrently articulated themes in the data. The aim of such condensation was to prepare the next step: the in-depth analysis (Schmidt 2000:455). In addition, the clear tabular form enhances transparency and confirmability of the analysis. In the fifth and final step, the developed analytical categories were analysed indepth by investigating the relationship between the chosen analytical categories. (Schmidt 2000:456). For this purpose the categories were applied to particularly significant data. Interviews were chosen, in which the observed positions were expressed very characteristically. These cases could be chosen having gone through the entire empirical material and all the memos and annotations produced during the coding process. In such a way, I returned from a rather general level of analysis to a more specific one, that is, to the individual interviews. The aim of this step was to test the produced findings. Moreover, the analysis could be further detailed and revised. The described processes of data analysis stand in considerable opposition to the positivist paradigm. Accordingly, qualitative inquiry follows specific criteria aiming at inter-subjective evaluation (cf. Steinke 2000:324-326). Denzin and Lincoln note on that account: “Terms such as credibility, transferability, dependability, and confirmability replace the usual positivist criteria of internal and external validity, reliability, and ojectivity” (Denzin & Lincoln 1994:14).

3.6 S PECIFIC

ASPECTS OF INTERPRETATION

The development of a typology Analysing the expert interviews with practitioners of ELSA research, I have developed a typology which allows me to map a spectrum of different ELSA research approaches. I distinguish four different narratives of experiences linked to specific conceptions of possible approaches towards ELSA research. With regard to this typology it is important to note that the developed types do not coincide with specific persons (or cases). Rather, I constructed the four types on the basis of several matching interview accounts. Actual interviewees can, however, express features of several types. With the development of a typology it is possible to abstract from real persons in order to achieve greater analytical rigor (cf. Bohnsack 2001:232; Kluge 1999). Yet, the aim of such analysis is not to produce as detailed as possible “representations” of particular cases, but it is to develop a methodological tool which can be used for the interpretation of the given field under investigation. The crucial point is that the development of a typology allows the condensation of complex empirical material. It

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can provide a structured comprehension of the field of study (Kluge 1999:23). In particular, it can be used to answer analytical questions applied to the area under investigation. Accordingly, a typology can be both used descriptively for the ordering of an object of study, as well as analytically for theory building and the production of relations between the respective types (Kluge 1999:49). However, typologies must not be overstated. Kluge suggests understanding them as a necessary intermediary step of theory building (Kluge 1999:51). Talking about roles When studying the different approaches of ELSA research (see part 3), I talk about the “role of the researcher”. With that I address the ways in which ELSA researchers see themselves during the research process – i.e. how they understand their task, function and the efficacy of their research activities. Since I have asked researchers how they see themselves, I talk about self-presentations or roles. Quite obviously the use of the term “role” can be criticised. Feminist scholars have done so most prominently (Butler 1990; 2004; Roberts 2006; Thompson 2005). They criticise that the term “role” suggests too strongly that equal alternatives of action would be available next to each other and could be freely chosen or assigned. Their criticism is – mostly in relation to gender roles – that such choices are by no means as free as the notion suggests. By contrast feminist authors claim that such choices are always pre-structured. Celia Roberts states critically that the availability of an action repertoire depends strongly on what other actors do in a given social context (cf. Roberts 2006:89). Human beings act upon each other, or as Foucault put it: with their actions they exercise influences upon the actions of other people (Foucault 1997[1983]). Inevitably, the issue becomes a matter of power. Celia Roberts does not deny room for a variety of individual action, but she criticises the presumed dichotomy between choices and constraint. She writes: “This complex set of influences rather undermines the original dichotomy. If roles are produced in relation to others’ behaviour and expectations, how can they ever be ’chosen’? And, indeed, how can they be ’assigned’ by others?“ (Roberts 2006:89)

Against the backdrop of these considerations, Roberts objects to the notion “role“, because the way in which human beings act upon the actions of others does not happen like roles are cast in theatre. The crucial point of her criticism is that there is no outside (cf. Foucault 1985:19). Mutual acting upon oneanother always happens within a social context where a non-involved position of an outsider is impossible. With that, Roberts points out a core problem of feminist theory. In her own words she raises the question of: “how to understand gender as something that is done but neither voluntary nor enforced” (Roberts 2006:89).

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The theoretical problem addressed here is also relevant for the object of the present study. Also in the context of ELSA research it is important to conceptualise different research approaches (roles) not as simple choices, which exist as equal dispositions next to each other. By contrast, it is important to develop an analytical perspective, which conceptualises the opportunities for action as embedded in the social context in which they can be exercised. From this perspective, opportunities for actions are significantly shaped by the research context in which they can be exercised. The relevant research context is a bioscience network, within which natural scientific research is funded in conjunction with the examination of ethical, legal and social aspects. In a specific way, this network turns researchers – who are themselves part of this network – into actors (Berger 2010). This is precisely how I understand what was earlier called the role of ELSA researchers. The outlined position, as it is presented by feminists, is “action-theory” oriented, and, at least in Butler’s case, apparently based on Foucault. The central idea of this perspective is that people never perform a “role” alone. Butler explains: “Moreover, one does not ‘do’ one’s gender alone. One is always ‘doing’ with or for another, even if the other is only imaginary. What I call my ‘own’ gender appears perhaps at times as something that I author or, indeed, own. But the terms that make up one’s own gender are, from the start, outside oneself, beyond oneself in a sociality that has no single author (and that radically contests the notion of authorship itself).” (Butler 2004:1)

From Butler’s point of view, roles are never chosen or assigned. Rather, they need to be conceptualised as the entirety of actions undertaken in a particular social field. Therefore, the environment attains an important function, because it is a crucial factor that determines whether actions succeed or fail. The fact that all social actors mutually act upon eachother, pre-structures the posibilities of their actions. Furthermore Butler notes that there is always the posibillity for resistance (Butler says: one can “improvise”), but such acts of resistance or improvisation always happen within a field of power relations, which is a product of the actions of other social actors. For Butler this fact is vital. She writes: “If I have any agency it is opened up by the fact that I am constituted by a social world I never chose. That my agency is riven with paradox does not mean it is impossible. It means only that paradox is the condition of its possibility.” (Butler 2004:3)

Hence, following this perspective, one can state that even if for ELSA researchers different research approaches may appear as choices, in practice, the performance of role behavior is always part of a larger context – the bioscientific network –, which enables or limits the choice of action posibilities. Butler's claim (in relation to gender) that individual action opportunities are pre-structured by cultural factors, can be

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utilised for the present research. The proposed perspective allows to understand ELSA research approaches as action apportunities which are possible only within established social norms, e.g. within what is recognized as a social scientific practice. For Butler, it is possible that cultural factors obtain a coercive nature, precisely when people attempt to go against the norms of a social environment, and consequently encounter negative response. In such a situation individual actions are no longer perceived as a choice (cf. Butler 2004:3-4; Roberts 2006:91). Despite these objections the notion “role” is well established in the social science literature and grounded in a prominent tradition: symbolic interactionism (Goffman 1959; Goffman 2010[1959]; Flick, Kardorff et al. 2000b). In this tradition, however, the concept of role is used to analyse the constructed nature of social action (not unlike Butler’s theoretical claims). According to symbolic interactionism, individual actors can define their own roles, but they can only do so in relation to others. The others are relevant as recipients and counterparts of one’s own behaviour. The point here is that the interacting individual anticipates how their encounters perceive them and always integrates these assumed perceptions of themselves into their own behaviour. Also from a symbolic interaction point of view, social actors are never fully free to choose their roles, but they are always constructed and performed in relation to other social actors. Consequently, these other actors pre-structure and limit individual choices. It is certainly the case that feminist theorists stronger emphasize the aspect of cultural embedding that it is pronounced in symbolic interactionism. Feminist theorists furthermore focus on how the constituting of the self is brought about and reproduced. But, I think that the aforementioned approaches stand in a complementary relationship to each other rather than being mutually exclusive, however, there are indeed different standpoints regarding the use of the term “role”.

Part 1: Knowing about genes

4 Genes in the womb1

Pregnancy is a special time in life; it is full of hopes and expectations for the future to come. Parents wish the best for their children: health, success and a happy life. These are understandable desires, but how they are experienced is not simply a personal matter. Technological innovations have radically changed reproductive medicine. “The question: will my child be healthy? gains a totally different and new meaning if the possibility exists to answer this question by means of prenatal examinations” (Wieser, Karner et al. 2006a:7). Today, it is possible to identify genetic anomalies even before a child is born. The knowledge prenatal examinations reveal is, however, not without consequences. It prompts a decision, if anomalies are found. Women need to decide whether or not they want to continue their pregnancy and once they have received a diagnosis such a decision is inescapable (cf. Wieser 2006). It is clear that without the technological means to perform prenatal tests women would not be in the position to call into question the birth of a child with a genetic condition. It is the context in which pregnant women are integrated that has produced this possibility. Pregnant women are part of a bioscientific network which significantly shapes how its members can act. Hence, prenatal testing is both, an individual decision and a distributed action (cf. Wieser, Karner et al. 2006a). Prenatal testing is, however, not a new technology. It is well over 40 years old and became part of medical routine practice soon after it was developed. So why study it now? I was asked this precise question by one of the first medical experts I interviewed in this field. The implications of my interviewee’s question were twofold. First, prenatal testing is a well-researched field and therefore, there is ample literature available. “Was there anything new I could contribute?”, my interviewee

1

An earlier version of this article was published under the title “Genetisches Testen: ELSA im Kontext medizinischer Anwendungen” in the special issue 10/2010 of “Österreichische Zeitschrift für Soziologie” (Wieser 2010b:139-167) and has been printed here in a revised version “with permission of Springer” (the publisher) to reuse the material (License Number: 3920700546608). I am the author of the original publication.

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seemed to ask. The second implication concerns an attitude I encountered many times when interviewing experts of genetic medicine. It is what Klaus Hoeyer and Richard Tutton call “Killroy ethics” (Hoeyer & Tutton 2005). With this term they describe an attitude that attempts to deal with all ethical issues for good in order to get them out of the way and never need to think about them again. Genetic societies have published their code of conduct in their journals which does not only set the standard for what is considered to be “good medical practice”, it also provides an ethical master justification (cf. European Society of Human Genetics 2003; Soini, Ayme et al. 2008; see also Nuffield Council on Bioethics 1993; Fletcher, Berg et al. 1985). Anybody working in genetic medicine can use it to explain the conditions under which it is ethically justifiable and most importantly, how the dark shadows of Nazi-eugenics can be left behind (cf. Wieser & Karner 2006). I will return to such ethical implications of the encounter between experts of genetic medicine and interviewing social scientists in part three of this study. For now, I want to answer why it is worthwhile to study recent developments in prenatal testing. One of the early concerns regarding prenatal testing was that it could become a slippery slope (cf. Gillam 1999). The concern was that once prenatal testing is introduced, a consecutive expansion can no longer be confined and the apprehended effect of backdoor eugenics (Duster 1990) becomes reality. There is evidence supporting the argument that regarding Down syndrome, exactly such a slippery slope has now occurred. I will argue that especially the introduction of nuchal translucency measurement (NT) and the combined maternal blood test (CT) have allowed for comprehensive screening which identifies nearly all foetuses with Down syndrome and has led to a rather high abortion rate. This development is fairly recent, and as my data demonstrate, in Austria it only had an effect after about 2002, not long before I started researching the subject. This is the first issue I will elaborate on in this chapter: the quantitative dynamics in prenatal testing and how they changed due to the implementation of new screening technologies. In a second step, I analyse qualitative changes in prenatal medicine as they occurred since the diffusion of these new screening technologies. For that purpose I draw on empirical data I collected during my project on prenatal testing in order to ground my argument in the perspective of people directly affected in the analysis. In particular, I relate my analysis to Abby Lippman’s “geneticization thesis” (Lippman 1991; 1994) to clarify as to whether women view their experiences during pregnancy in genetic terms. Against the backdrop of my findings, I argue for a differentiated interpretation of Lippman’s claim. Even though it is possible to find evidence for geneticization in specific areas, I nevertheless argue that empirical analysis does not support the generalisation of the geneticization thesis. The data used for the arguments in this chapter were collected over the course of a research project on prenatal testing funded by the Austrian Genome Research Programme GEN-AU. The presented arguments are based on a series of interviews with

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30 medical experts in the field of genetic medicine as well as interviews with 32 women who reported on their personal experience with prenatal examinations during their pregnancy. Geographically, the focus was on the southeast of Austria, but included the provinces Upper and Lower Austria, Styria, Carinthia, Tirol, and the capital city Vienna. All of the conversations were recorded on tape and transcribed verbatim. The software atlas.ti was used for the qualitative analysis of the interviews. A detailed outline of the analysed sample and chosen methodological approach can be found in chapter 3 of this volume.

4.1 D EVELOPMENTS 4.1.1 Beginnings and basics Prenatal testing was one of the first applications of genetic testing. In 1956 in Sweden, Joe-Hin Tijo and Albert Levan succeeded in the correct determination of the number of human chromosomes, 46, and in 1959 in France, Jérôme Lejeune discovered that Down syndrome is caused by a trisomy of chromosome 21. At about the same time, a causal relationship was found in the UK between genetic anomalies of the sex chromosomes and the two clinically described conditions: Turner (XO) and Klinefelter (XXX) syndrome (cf. Kröner 1997:35). A few years later, the extraction of foetal cells from amniotic fluid (amniocentesis) allowed the identification of genetic anomalies already during pregnancy. The first documented abortion of a foetus with Down syndrome that had been diagnosed using amniocentesis was carried out in 1968 (Schwarz-Cowan 1994:38). In Austria the first successfully performed cytogenetic analysis of foetal cells extracted with amniocentesis was carried out in Graz in 1974. Within a short time, prenatal testing was established as a routine medical practice (cf. Rosenkranz & Zierler 1982:213). Not much later than in Graz, prenatal testing was offered in Innsbruck as well. The situation in Vienna was somewhat different at first, since the know-how for cytogenetic examinations first needed to be built up at the Histological Institute of the Vienna General Hospital before prenatal testing could be offered there as well. The specialisation in Human Genetics was not yet as institutionally anchored in Vienna at the beginning of the 1970s as it had been in Innsbruck since 1963 and in Graz since 1969 (Fonatsch, Lacone et al. 2007:250). In successive years, the number of prenatal tests continually rose. Especially for pregnant women over the age of 35, amniocentesis became a medical routine (Rosenkranz & Zierler 1982:213). The reason for this is the so-called “maternal age indication”. The medical background for this approach is that the risk for the occurrence of chromosomal anomalies increases with the birthing age of the mother (cf. Snijders, Sundberg et al. 1999). Defining the age limit at 35 is basically the result of

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a risk equation. It conforms to the view that up to that age the risk of chromosomal anomalies is relatively low, and hence, from a medical point of view there is no need for prenatal testing (as long as no other genetic risk factors are known). The definition of the age limit, does not only consider the rising probabilities for the occurrence of chromosome anomalies, but also the costs of such an examination are taken into account as well as the risk caused by the examination itself. In about 1% of all prenatal examinations the intervention itself causes a miscarriage (de Graaf, Tijmstra et al. 2002:628). This procedural risk of a chorionic villus sampling (CVS) – an alternative method to extract foetal cells – is usually estimated a little higher than that of an amniocentesis (Stengel-Rutkowski 1997:52-55). 4.1.2 Risk assessment in the run up to testing Until the end of the 1990s maternal age indication was the applied standard paradigm. This changed, however, dramatically through the introduction of new technology. A British research team at King’s College in London discovered a correlation between

Figure 2: Development of the number of invasive prenatal testing over recent years

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the occurrence of certain chromosomal anomalies and the formation of an oedema on the neck of the foetus (Nicolaides, Azar et al. 1992). On this basis, it was now possible to perform a much more accurate assessment of the risk of a pregnant woman giving birth to a child with a chromosomal anomaly than it had been using merely an age-based risk assessment. If, in addition to measuring the nuchal fold under ultrasound (nuchal translucency measurement), the mother’s blood is also analysed, the probability of the prognosis of a chromosomal anomaly can be estimated much more accurately. Using this method, most of the pregnancies with foetuses that have Down syndrome and similar chromosomal anomalies can be detected. The fundamental advantage of these examinations is that there is no procedural risk of the examination causing a miscarriage. Meanwhile the risk assessment of chromosomal anomalies in pregnancies is extended to virtually all pregnant women. The so-called maternal age indication is generally seen as out-dated. Women make their choices no longer solely dependent on their birthing age. Statistical data provided by one of the larger human genetic centres in Austria support the observation of these developments during recent years. However, since 1995, a decline of performed invasive tests can be noted while at the same time the number of identified anomalies has increased. This clearly shows a considerable increase of the number of women screened in order to determine their risk for carrying a foetus with a chromosomal anomaly using NT ultrasound (and a Combined Test). This conclusion is also shared by the interviewed experts. The graphic below shows the overall decline of invasive prenatal tests carried out. The graphic on the right shows the proportion of identified foetal anomalies in all performed examinations. In other words, it shows how the efficiency of prenatal testing has increased due to the introduction of the new screening technologies used in the run-up to amniocentesis or CVS. The fact that more foetuses are screened using nuchal translucency measurement raises the question whether this tendency also leads to an increased number of abortions. It is quite hard to obtain definitive numbers on this situation. One possible reason is that the subject is still a taboo in Austria. Alexander Bogner has written extensively on the difficulties and hurdles of empirical social research in the area of prenatal testing and has also reflected on these difficulties from a methodological perspective (Bogner 2005). Furthermore the seemingly objective language of numbers has become the subject of interpretation. There are occasional reports on how “surprisingly low” the abortion rate of foetuses with Down syndrome is (cf. Standard 2007, 4th of April). This media presentation is contradicted by the data of the Austrian federal statistical institute (Statistics Austria). In a publication from 2006 the official figure of children born with Down syndrome was documented as eleven for the year 2003. In the two following years, 2004 and 2005, the number was the same (Austria 2006:69).

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Figure 3: Efficiency of identified chromosomal anomalies in percent over recent years

These eleven children born with Down syndrome can now be compared with a calculated number of foetuses expected to be born with Down syndrome in a population of about 78.000 annual births in Austria.2 The scientific basis for such comparison is the very same database as used for the nuchal translucency measurement of foetal Down syndrome screening (cf. Snijders, Sundberg et al. 1999). The result of this estimation is a calculated abortion rate of approximately 94% of all conceived foetuses with Down syndrome, which statistically should be born in Austria if no abortion was carried out. Of course, this is an estimated abortion rate and not an actual one. But as long as no actual numbers on abortions as a consequence of prenatal testing are collected and made publicly available, there are no better instruments for assessing the situation than the data provided by Statistics Austria. Alongside the introduction of the nuchal translucency measurement, an expansion of prenatal testing has occurred which now covers nearly all pregnant women in

2

The exact number of live births in 2003 was 76.944, in 2004 it was 78.968 and in 2005 it was 78.190 (Austria 2006:69).

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Austria. In addition to this expansion, the introduction of this new prenatal screening technology has gone along with further profound changes. In the research interview both medical experts as well as examined women report a development regarding the counselling practice. According to these interviews, prior to the first screening via ultrasound pregnant women are not explained the implications of such examination, and they are therefore not given the opportunity to make a choice on the basis of “informed consent”. This development is crucial insofar as “informed choice” is declared the ethical backbone of genetic medicine (cf. Wertz & Fletcher 2004). Precisely for this reason, geneticists observe the developments in the field of gynaecology – where NT is carried out – rather critically. Their criticism points to the fact that, an increasing number of women no longer make a conscious choice before undergoing the examination. Instead they find themselves in the heat of things when a decision is suddenly prompted (Berger 2008). It is still the case, that women make the final decision whether or not to undergo invasive prenatal testing. However, these decisions are not made without preconditions. They are always already informed and pre-structured by a series of medical actions (Wieser 2006). If a pregnant woman finds herself in a situation where she has to make a decision about whether or not to undergo amniocentesis or chorionic villus sampling, she has already had an examination which has determined the genetic risk of the foetus. The ethical problems, associated with such decisions are no longer reserved to the time before the examination, but as a consequence of the described sequence of examinations, they become shifted into and spread across the already on-going examination process. At the same time, a delegation of ethical problems takes place, namely the deferral of responsibility for counselling from gynaecological surgeries to human genetic counselling services. In Austria, the described development can be observed from 2002, but only with hindsight have its significance and importance become fully effective (Wieser 2006). Against this background, it is easy to understand why it is of such great importance to study ethical, legal and social aspects of areas of genetic medicine which are perceived as long established and well-known. The delineated problem is not least important because it concerns the fundamental ethical principles of genetic medicine (decision autonomy) and how they become undermined by organisational arrangements of how women are enrolled into genetic medicine. 4.1.3 Dynamics of diffusion In recent years, prenatal testing has shown an especially dynamic development. By comparison, the diagnosis of genetic conditions in other medical areas has developed only relatively moderately (Wieser, Freitag et al. 2008). Although a constant increase of genetic testing can be observed in most areas, the dynamic development in the area

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of prenatal medicine is a lot more striking. There is, however, a second area which also shows a very dynamic diffusion of diagnostic technologies used for the identification of genetic illnesses. This is the area of newborn screening. The number of screened genetic conditions has expanded dramatically during the past decade (Wieser 2010b; 2010d). I discussed newborn screening in more detail in chapter 5 of this volume.

4.2 G ENETICIZATION Having highlighted quantitative implications of prenatal screening by discussing the diffusion processes of genetic testing, I now turn to qualitative developments. The relevant question in this concern can be paraphrased as follows: How does genetic medicine change the ways in which people experience health and illness? Put more generally, the question is how people interpret their existence differently when knowing about the genetic basis of human life and accordingly act differently with that in mind. The thesis that people increasingly interpret their own health in genetic terms has been prominently discussed by Abby Lippman (1991, 1994). She writes: „stories about health and disease are increasingly told in the language of genetics“ (Lippman 1991:17) and proposes the term “geneticization” for this development. Lippman even goes further and states that people do not only see their health but increasingly their entire life determined by their genetic make-up. She states that there is a growing tendency „to claim that human genetics acts alone to make each the organism she or he is” (Lippman 1991:19). Lippman’s geneticization thesis is quite popular and is very widely received in the social sciences dealing with genetic medicine. And Henk ten Have notes that “‘geneticization’ primarily is a heuristic tool that can help to re-focus the moral debate on the implications of new genetic knowledge towards interpersonal relations, the power of medicine, the cultural context and social constraints, rather than emphasizing issues as personal autonomy and individual rights“ (ten Have 2001:295). There are, however, also critical accounts of Lippman’s geneticization. Adam Hedgecoe (1998) has pointed to the fact that there is little empirical evidence for this thesis and that affirming arguments are mainly drawn from a “macrotheoretical perspective” (cf. Hedgecoe 1998:241). Taking this objection seriously, I inquire as to how and to what extent people interpret their health problems and other areas of their lives in genetic terms. Based on my empirical data, I argue that people actually do not do so all the time. In this way I try to contribute to a more differentiated understanding of geneticization. This means that I argue against the generalisation of Abby Lippman’s geneticization thesis. More precisely, my goal is to show under which circumstances it is justified to speak of geneticization and where it is not appropriate to do so.

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Against the backdrop of what was explained above, I have chosen reproductive medicine as a prime case for the scrutiny of the geneticization thesis. Also Lippman has initially built her argument on her investigation of prenatal testing. It is certainly true that couples who are aware of a specific medical problem in their families, and thus seek genetic counselling, view their reproductive plans through the lens of genetic knowledge. However, prenatal testing does not only concern couples who are already aware of such a genetic risk, but the much large part of such examinations is carried out under circumstances where no relevant family history is known. In quantitative terms, prenatal testing mainly aims at the identification of chromosomal anomalies, most importantly Down syndrome. The reason, why all women are offered screening for Down syndrome is, because it occurs spontaneously, which implies that the risk cannot be specified on the basis of family history. The point is that once an increased risk has been determined through a medical examination (nuchal translucency measurement), the pregnancy can no longer be perceived without this knowledge. The term “risk induction” describes this situation. In this respect Abby Lippman is right: Once explained by a medical specialist it can no longer be ignored that one’s personal risk of carrying a foetus with Down syndrome has been classified as “increased” when making further decisions, i.e. whether or not an examination of the maternal blood, an amniocentesis or a chorionic villus sampling should be performed. The following interview extract shows how a tested woman starts to view her pregnancy in terms of risk. “Anyway, within two weeks, I then visited Doctor (name) together with my husband, who not only psychologically but also physically supported me at that. And we had a very intensive counselling session and gathered further information from the internet and so on, and finally reached the conclusion that the nuchal transparency is indeed increased, and apparently there is this sort of limit. If three millimetres are exceeded, only then gynaecologists usually recommend taking a closer look. And the nuchal fold, in the twelfth and thirteenth week, was two point seven millimetres, thus a little below that.” Mother of one child and pregnant again at 33

The quoted interview shows that this woman struggles with coming to terms with her probabilistic diagnoses, which does not allow a clear and certain conclusion. It also becomes apparent that this woman follows the logic of risk in which she became drawn into by the performance of nuchal translucency measurement. Henceforth she starts weighing her decisions against the identified probabilities. 4.2.1 Pregnancy as an enjoyable and light-hearted time The question now is whether it is justified to talk about a geneticization (of the perception) of pregnancy, in cases where no increased risk was determined. My main argument is that pregnant women have a strong desire to experience their pregnancy

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as an “enjoyable and light-hearted time”. In other words: For many of the interviewed women it was their explicit agenda, precisely not to think about genetic or other problems that may occur during pregnancy. Many voiced their concern that it might be bad for the baby if they worried all the time, and stated that they were therefore keen on a positive experience of the pregnancy (cf. Wieser, Karner et al. 2006b). The following interview extract exemplifies this point: “You are burdened, which you shouldn’t be for the development of the child. You should actually be in a good mood during pregnancy and not struggle with all kinds of fears.” Mother of one child, 34 years at pregnancy

Not least in relation to such ideal of emotional well-being, women experience it as harrowing when the positive feelings about their pregnancy can no longer be upheld, due to medical examinations insistently stating that there is a problem that must be dealt with. As a result of this situation, women feel they hit rock bottom when confronted with an increased genetic risk. It is, however, also true for a large number of the women interviewed that it is their explicit goal not to medicalise their pregnancy and consequently they do not want to geneticise it either. Interviewed women repeatedly mentioned how much they value their pregnancy not being exclusively perceived from a diagnostic perspective, continuously seeking to check whether anything is wrong. One woman expressed her desire not to be seen as merely the object of medical examinations in the following way: “It’s just that I have the feeling that the medics are, quote unquote, too attached to the machines. The machines somehow endow them with security. That’s understandable. That way they have the documentation. My feeling is that like that they are protected. It’s important to document all that, it probably is important. But I ... They spend so much energy and time on that. I think, that there is not much left for the essential, for the interpersonal issues, and they also lack this additional knowledge. I just miss that.” Mother of five children, pregnancy of youngest child at 39

The desire to experience pregnancy as an enjoyable and light-hearted time goes hand in hand with the attempt to elude the medicalization of pregnancy as much as possible. Therefore, it is important to put the claim of an increasing geneticization into perspective. However, the desire not to permanently medicalise pregnancy but instead to be able to experience it as an enjoyable and light-hearted time is always accompanied with ambivalence, since it requires pregnant women to suppress the possibility of foetal health problems.

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4.2.2 Ambivalence Without a doubt, living with a genetic condition in the family fundamentally chances the lives of all family members in significant ways. Nevertheless, it is only justified in a limited way to speak of a “geneticization” as Abby Lippman suggested. The claim that people increasingly think about themselves and their health in genetic terms cannot be empirically supported as universally as it has been formulated. Even in the context of reproductive medicine – which can certainly be regarded as a core area of geneticization – one has to differentiate. The way in which an ultrasound screening is experienced by the majority of pregnant women can best be described with the notion ambivalence. Even though most women are aware that the performed examination might identify health problems, they try not to think too closely about what might be found. They only want to face this possibility when it can no longer be avoided (cf. Scully, Porz et al. 2007:211). The following interview extract shows this attitude: “So I had a lot of conversations with friends who have also been pregnant several times and are pregnant a lot right now – who repeatedly say: ‘I’d rather not think about what has happened to you, because then I am not feeling well at all in the pregnancy.’ I think it’s a protective mechanism, to say: ‘I want a healthy child and I hope for a healthy child and I don’t think about what could go wrong.’ It’s quite a burden. And I have experienced that myself with (name of the child) how burdening it is when you ask yourself what could possibly happen; to continually bear that in mind.” Mother of three children, pregnancy of youngest child at 32

Other interviewed women also articulated the desire precisely not to view pregnancy from the perspective of risk and to think about themselves and their growing child in genetic terms. Rather they wish to experience their own pregnancy as an especially wonderful time (Wieser, Karner et al. 2006b). However, it can generally be said that pregnant women increasingly find themselves in a state of ambivalence. The emotionally shaped experience of pregnancy is cognitively accompanied with an awareness of uncertainty resulting from their knowledge that (genetically caused) health problems might occur. However, genetic knowledge becomes inevitable as soon as a diagnosis is made or the given result of an examination at least suggests an increased probability of a genetic illness or disability. Once this has been conveyed to those examined, the genetic background can no longer be eliminated from thought. Hence geneticization is the result of concrete medical actions: the result of medical consultations. In the context of genetic counselling, it is ensured that the counselees understand the role of genetic factors as well as how these need to be taken account when making further decisions. Even if a lot of emphasis is placed on decision autonomy and medical specialists try hard to avoid influencing decisions by applying a non-directive style

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of counselling, councillors nevertheless make quite some effort to inform the counselees during the decision making process with their medical knowledge. There is an implicit imperative operating that can be expressed as follows: you can make your own choices, but you need to know the genetic background knowledge of your specific situation. This norm demands an obligation to know (cf. Berger 2008; Koch & Nordahl Svendsen 2005). In this sense it is definitely possible to speak of geneticization. Still, geneticization takes place in specific social situations (especially during counselling) and it is related to particular problems. Outside of these contexts it is much harder to substantiate the geneticization thesis with empirical evidence. 4.2.3 Counter models It is quite remarkable that women attempt to elude this imperative that “demands to know”. Women who have experienced prenatal examinations repeatedly emphasize that they would never have considered an abortion anyway. In so doing they constitute themselves as subjects in a way that is mainly based on their relationship with their unborn child. Excluding an abortion as an option allows women to develop an unconditional relationship to their unborn child, i.e. an attitude that accepts the child as it is. The idea of unconditional love is very present in such self-conceptions. Here is an example of this account: “Well change ... Well, I thought, I am pregnant and the child is as it is, and will be born. So it wouldn’t have had somehow influenced me in a way that I would have said, I’ll have an abortion or whatever. So I would have taken it as it is. And even if I had undergone countless examinations, in the end it wouldn’t have changed a thing.” Mother of three children, pregnancy of youngest child at 30

The interviewed woman uses the subjunctive grammar to give her assessment of how she would have acted if a genetic anomaly had been detected during her pregnancy via prenatal testing. When contrasting such self-assessments with the abortion rate of foetuses with Down syndrome, however, one encounters a blatant contradiction. Apparently the self-assessment of women does not reveal anything about what choice they really make when a concrete examination result is available. It has already been mentioned that the abortion rate lies at approximately 94%. My point is that this contradiction must not solely be interpreted as flawed self-assessment. Instead it can be seen as a desired self-constitution by which parents actually turn themselves into who they would like to be. As long as no genetically caused illness of disability is diagnosed during pregnancy, this identity construction can be maintained. The crucial point of my argument is that prenatal examinations tends to take just this possibility away from parents-to-be, and increasingly so the more pressure there is to deal with the possibility of a diagnosis for genetic anomalies. To the same extent

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that the continuation of a pregnancy is made dependent on a certain examination result, the idea of unconditional love is being undermined. This situation results in an identity conflict which turns a certain form of parenthood into an illusion. The solution to this problem is a hypothetical construction which is expressed by just that statement: to never have considered an abortion anyway. For, whoever succeeds with presenting this attitude convincingly to oneself and others can preserve the possibility to constitute oneself as a subject of an unconditional loving parent. At this point it is important to recall that the majority of all prenatal examinations do not lead to diagnosis of a genetic condition. This is especially true for the nuchal translucency measurement. Only a small part of examined women are confronted with an increased risk and therefore have to deal with the question of whether they would consider abortion or not. The interviewed women repeatedly reported that they had obtained only very rudimentary counselling before nuchal translucency measurement. This fact appears in a different light, when considering such self-constituting. Consider that extensive counselling, as it is required according to the principle of informed consent, would imply the conscious acknowledgment of the possibility of an undesirable result and raise the question of how one would deal with such a result. Against this background, insufficient counselling is not simply a shortfall on part of the medical personnel, but paradoxically it corresponds to the desires of examined pregnant women, who prefer to think of themselves as never having considered abortion. The avoidance of dealing with the possible consequences of prenatal testing is, from this perspective, not irrational at all, but consistent with the attitude which moves unconditional love for the child to the centre of one’s self-constituting as a parent. Also in the following extract the interviewee expresses why she refrained from dealing with a negative scenario: “We are not some kind of fundamentalist opponents of abortion who take it to the streets and demonstrate, but for us it’s just, yeah, for us it’s just like that, and of course we would have talked about it and also thought about whether we have the strength to somehow carry through with that, but we never really talked about an actual worst-case scenario, because we said that would only ruin our joy.” Mother of one child, pregnant at age 32

Once more this interviewee expresses her ideal of how she wants the experience of her pregnancy to be.

4.3 C ONCLUDING

REMARKS

Against the backdrop of the presented accounts, empirical evidence does not support a generalised geneticization thesis. Abby Lippman’s claim that people increasingly view their life in genetic terms does not do justice to the full life reality of pregnant

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women. Pregnancy is considerably shaped by the desire to experience this phase of life as light-hearted and positive as well as by the aim of constituting oneself as an unconditionally loving parent. Precisely for that reason women perceive having to think about possible health problems of the foetus as irritating and therefore avoid it as long as they can. Therefore, I argue that a generalisation of the geneticization thesis leads to undifferentiated and thus inappropriate conclusions. It is hence important to investigate specific contexts of genetic medicine, in which human beings can make tangible experiences. Consequently, the approach taken in this chapter favours an empirical grounding. Wilhelm Berger understands this inductive approach as a methodological principle: to choose the starting point in concrete situations and not in general principles or theoretical models (cf. Berger 2006). On this basis it is possible to study problems as they occur to those confronted with the results of genetic examinations and how these people make sense of their situation. When focussing on prenatal screening it becomes apparent that those examined do not always interpret every aspect of their life in genetic terms. As the presented data demonstrate, pregnant women make considerable efforts not to medicalise their pregnancy and consequently avoid viewing it in genetic terms. An identity construction was observed that focuses on the relationship to the unborn child. Women subscribing to it aspire to the ideal of unconditional love and therefore rule out the possibility of an abortion should prenatal tests identify genetic anomalies. Two factors support this approach. First, when no conspicuous results are given and no genetic anomaly becomes identified, there is therefore no need to view the pregnancy in genetic terms. The second reason is related to the way in which initial prenatal screening and consecutive diagnostic testing is organised in Austria. The consent practice for the initial prenatal screening examination is perceived to be rather poor. Hence, women can avoid thorough reasoning about the implications of the identification of a genetic anomaly. They only come to realise the full implications of the screening when confronted with conspicuous results, and only then their self-conception as an unconditionally loving parent becomes challenged. In such, however rare cases, a conscious decision needs to be made whether or not to proceed with diagnostic testing. This is the moment, when detailed genetic counselling is provided and how geneticization happens through the provision of medical knowledge. Furthermore, I have argued that the described organisational arrangement effectively undermines the ideals of human genetic counselling; according to which choices should be made before relevant medical actions are taken. When pregnant women meet a councillor to discuss the implications of diagnostic prenatal testing, they already know that their individual risk is increased. Thus, a decision cannot be un-conditioned any longer. It becomes clear that such decisions are not made at the moment, but rather, they are part of a long process which has already begun. When decisions are prompted, one is always caught in the middle of the process.

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Screening technologies play an important role in this regard, since they exercise a considerable recruiting function for follow-up diagnostic tests. The introduction of nuchal translucency measurement in particular has significantly changed the practice of prenatal medicine. It is therefore important to pay attention to the implementation of technological innovations into routine medical practices. In the next chapter, I follow this line of analysis and investigate recent changes in newborn screening.

5 Coming into being

In the previous chapter I argued that in the context of prenatal screening Abby Lippman’s (1991) geneticization thesis can be empirically grounded only to a certain extent. People come to think about their life (and that of their children) in genetic terms only in very specific situations. In this chapter, I continue my scrutiny to discuss whether evidence for geneticization can be found in relation to newborn screening. Both newborn screening and prenatal testing are especially interesting because they raise important questions about subjectivisation processes, especially, as to how parents become subjects of knowledge. Problematizing subjectivisation (not as a genetic inscription of base pairs into the cytoplast of human cells) requires a considerable theoretical shift. But once this shift is made, it is possible to discover the processes by which subjects of knowledge (about the genes) are being produced by specific medical actions and not by molecules in the cells. Genetic medicine systematically creates and stimulates a particular type of knowledge. In the context of genetic medicine, the processes through which human beings become who they are are tightly connected to “truth games”. The crucial aspect about these truth games is that they prompt decisions. The patients and counselees involved in genetic medicine are urged to use the knowledge provided by medical experts when making their decisions. At the same time, these decisions become tied to responsibility. This is because the possibility to make choices implies that one could have decided differently. The ethical reasoning applied in genetic medicine suggests, that if alternative choices are available responsibility goes with those who decide between them (Maier 2006:182; see also Wieser & Karner 2006:33-35; Cox 2006). Using the Foucauldian “tool box” allows me to analyse the mutual interrelation of knowing, deciding and accepting responsibility as a specific form of subjectivisation processes. However, subjectivisation processes become only effective by means of action regimes of genetic medicine consisting of social, political and technical elements. It is therefore one of the main purposes of this chapter to show that the way in which people are confronted with their genetic make-up, or that of their child, is the result of clearly defined organisational arrangements. The confrontation with genetic

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knowledge is therefore neither accidental nor quasi-natural. Coming to know one’s own genetic make-up (or that of one’s child) does not follow an inherent logic that leaves no choice as technological determinism might suggest (cf. MacKenzie & Wajcman 1985:5; Ropohl 1991:193; Rammert 1992; 2002; 2003; Schulz-Schaeffer 2000:31-33; Werle 2002; 2007; Dolata & Werle 2007; Dolata 2008). In order to understand how people become who they are in the context of genetic medicine, it is essential to closely scrutinise those organisational arrangements which structure the confrontation with one’s own genetic constitution (or that of one’s child). Thus, I do not suggest analysing genetic technologies in isolation, but always in relation to their concrete integration in socio-technical systems. This leads me to a further dimension of the Foucauldian understanding of subjectivisation. Foucault proposes to study the practices by which people act upon others (cf. Foucault 1981; 1982; 1997[1983]). In the context of medical actions, such acting upon others is not at all spontaneous, but instead it follows highly formalised procedures (“protocols”), which largely structure what happens during a medical consultation. Using the example of newborn screening allows me to analyse how particular medical arrangements organise and (pre-) structure the ways in which parents become confronted with the genetic make-up of their children, and hence also with their own. I complement this analysis by showing how the parents of children with a genetically caused metabolic illness subjectify themselves. They do so, as I argue in this chapter, through their identification with their role as caring and providing parents and thus constitute themselves as responsible and loving subjects. Furthermore, I discuss the role of technology and how they contribute to subjectivisation in the context screening examinations applied to identification of genetic conditions. For this chapter, I used interviews with genetic medicine experts as well as interviews with parents whose children were diagnosed with cystic fibrosis (CF), a genetic disease which can be identified through newborn screening. Geographically the interviews covered most of Austria with the exception of the provinces Vorarlberg, Burgenland, and Salzburg. A detailed description of the analysed sample and the applied methods was outlined in chapter 3 of this volume.

5.1 D IFFUSION

OF NEWBORN SCREENING

Similarly to prenatal testing, newborn screening was introduced in Austria several decades ago. The pilot phase started as early as 1966. The screening of newborns for phenylketonuria (PKU)1 was soon extended to the whole country and thus became

1

Phenylketonuria is a genetically caused metabolic disease, which, if left untreated, leads to severe retardation. It can, however, be treated quite effectively with a special diet. Early

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standard in Austrian neonatal medicine. In the course of time, another five genetically caused metabolic diseases were added to the screening programme. The laboratory responsible for newborn screening in Austria specifies the participation rate in the programme as “practically the whole newborn population” (Eichler & StöcklerIpsiroglu 2001:1316; Bodamer, Hoffmann et al. 2007:441). In recent years, the area of newborn screening has shown an especially dynamic development similar to developments in prenatal testing. By comparison, the diagnosis of genetic illnesses in other medical contexts has developed in relative moderation (Wieser, Freitag et al. 2008). Although genetic tests in general have continuously increased, the growth rate does not compare with the considerable increase in the areas of prenatal testing and newborn screening, in which nearly every foetus and newborn is routinely screened nowadays. In 2002, a new technology – the so-called tandem mass spectrometry (MS/MS) – was introduced to the Austrian newborn screening programme (Stöckler-Ipsiroglu, Bodamer et al. 2000:2). Subsequently, the catalogue of screened conditions was extended from the original six to twenty-three. Eighteen of these genetically caused metabolic illnesses were identified via MS/MS and an additional five were tested with classic methods (Stöckler-Ipsiroglu, Bodamer et al. 2000:13). The Austrian newborn screening centre recently stated the current total number of screened conditions as thirty-one (cf. Department of Paediatrics and Adolescent Medicine).2 In principle a further extension is possible. The American College of Medical Genetics was commissioned by the Maternal and Child Bureau to outline a process for the standardisation of state newborn screening programmes. In their respective report Michael Watson and his colleagues summarise the evaluation of altogether 84 conditions. In conclusion, they state that 29 conditions should be recommended for a “core panel” and for which screening should be mandated; 25 additional conditions were classified as „secondary targets“.“Twenty-seven conditions were determined to be inappropriate for newborn screening at this time” (Watson, Lloyd-Puryear et al. 2006:13). It is evident that the possibility of identifying genetic illnesses at an early stage can be seen as a considerable benefit for the person examined, especially when this leads to an improved therapeutic outcome. In many cases the advantage of an early detection is undeniable. There are however some cases where this advantage is not yet empirically proven. Screening for these conditions is therefore judged ambivalently in medical circles. This is also one of the main reasons why the national screening programmes in Europe vary considerably in their scope (Bodamer, Hoffmann et al. 2007, Pollitt 2007). detection is decisive for the success of this therapy (cf. Guthrie & Susi 1963; Dhondt 2007:418). 2

Source: http://www.meduniwien.ac.at/typo3/?id=3552; last access 10.12.2011.

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The example of newborn screening shows that the diffusion of genetic medicine happens precisely in areas where no “informed consent” is obtained from those examined (or from their parents). The Austrian newborn screening programme is based on the principle of “informed dissent” (cf. Stöckler-Ipsiroglu, Bodamer et al. 2000; sometimes the term “informed refusal” is used instead, see Liebl, von Kries et al. 2001:1329). Parents are still given the choice to refuse their own child to be tested. However, If parents decide to opt out of the screening it is mandatory for them to learn about the possible consequences of metabolic illnesses if not discovered at an early stage. Yet, a protocol which arranges for parents to be informed about the examination only when they decide against it, results in a situation where the majority of parents is not informed about the details of the newborn screening programme and its implications. Against this background, the question arises how such a procedure can be justified. Medical experts usually answer as follows: The therapeutic benefit of an early diagnosis for the unborn child justifies the implementation of a screening programme that covers all newborns. This position is basically in accordance with WHO guidelines (cf. Andermann, Blancquaert et al. 2008; Godard, ten Kate et al. 2003). Another accepted criterion for the introduction of a screening programmes is that it can be carried out at a low cost. It is quite obvious that this goal is compromised by the cost of detailled information for the parents. Detailed personal counceling is apparently very costly. However, the effort made to provide informaton on the process varies greatly in Europe. This calls attention to the design of newborn screening programmes. How extensively can parents be informed in Austria at a rate of approximately 78.000 children born every year? How closely can each of the included conditions be discussed? From a health-economical perspective the procedure according to the principle of “informed dissent” is favourable. However, the problem of parental information remains to be critical if counselling is kept to those who intend to refuse newborn screening. But even in countries like the United Kingdom and France, where the parental consent is obtained before the heel prick is performed, empirical studies have shown that under the given (time) conditions the quality of the respective consent procedures were found to be inadequate (Parsons, King et al. 2007; Vailly & Ensellem 2010). It is also important to mention that newborn screening uses non-genetic methods for the detection of genetic anomalies. For this reason newborn screening is usually not conceptualised as a genetic test in its narrow sense, despite its effective purpose to identify nothing else but genetic conditions. As one can argue in favour of the use of screening technologies in the context of prenatal testing, also examinations with non-genetic methods for newborn screening exercise a decisive recruiting function; to borrow a term from actor-network-theory (cf. Callon 1986). People hardly ever proactively seek genetic (counselling) services. Normally they go to genetic services

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only when referred by another physician. This referral is based on a medical examination which indicates a need for further genetic clarification. This is why screening examinations – as they are routinely carried out in the areas of prenatal testing and newborn medicine – fulfil an important recruitment for subsequent genetic tests. In the first step, a screening test is performed with non-genetic methods. Subsequently, the results need to be verified. In order to confirm the initial screening result, examinations with genetic methods are performed to achieve diagnostic certainty. This combination of non-genetic and genetic methods is very effective. It can be applied very comprehensively at low cost to recruit patients for a closer look at their genetic constitution. The point is, however, that especially in those areas in which the screening for the existence of genetic anomalies has increased the most (cf. Wieser 2010b), the actual examinations are not carried out under the conditions of informed consent (see also Lippman 1991:21).

5.2 F INDING

OUT ABOUT GENES

It is indeed remarkable that in the first step of newborn screening parents are not made into subjects of knowledge. Thus, in the beginning there is nothing to decide for them either. The decision lies with the state. Here the state aims at beneficence and acts as a provider for all newborns. The position of the state as a welfare provider is that it is best for all children if they are routinely screened as newborns to determine whether or not they suffer from a certain number of genetically caused diseases. However, in the vast majority of cases no anomaly is found and hence parents are never aware of the implications of these examinations. Should they happen to find out more about the process, this happens rather accidently than purposefully. Consequently the paternalistic state as a provider does not only make the decision, but also takes responsibility for it as well. This approach is also supported by the WHO criteria for screening since they require just that by establishing that the provision of necessary treatment has to be assured for the conditions to be tested (cf. Wilson & Jungner 1968; Andermann, Blancquaert et al. 2008). The situation considerably changes once the screening shows a conspicuous result and a genetic condition is identified. If this is the case, the analysis of the available sample is immediately repeated. If the result is once more confirmed, and the occurrence of a genetically caused disease is quite likely, the parents are notified and offered to have their child tested with genetic methods in order to obtain diagnostic certainty. Once this process has started, the parents are given detailed information about the situation and their consent for further examinations is obtained. At exactly this point a transfer to a different medical regime takes place. It is a shift from a (paternalistic) regime of prevention to a regime of decision autonomy (similar transfer processes have been described by Stemerding & Nelis 2006 for the case of colon

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cancer). As a matter of fact a number of paediatricians advise offering directive counselling in such cases. Their justification is the therapeutic advantage for the newborn, which is not yet able to decide for itself in this situation. To the same degree that parents are informed and encouraged to make decisions, the medical arrangement urges them to accept responsibility for their decisions. In other words, they are subjectified in a particular way. The key act is the medical counselling process in which knowledge is conveyed, choices are outlined and decisions become established (cf. Wieser 2006). In such a way, parents are made into subjects of knowledge which are prompted to know about the genetic condition of their children in a specific way. However, this knowledge also includes the hereditary patterns of the diagnosed disease. The diseases included in the Austrian newborn screening programme are (with one exception) recessive conditions. This entails that with the diagnosis of a genetic anomaly of their child parents automatically know that they themselves are carriers of that genetic condition. The significance of this information lies in the fact that with a probability of 1 in 4 the same disease can occur again in further pregnancies. Parents of diagnosed children cannot experience a subsequent pregnancy without bearing this in mind. This is precisely the way in which parents are turned into subjects of knowledge in the context of newborn screening. The very same knowledge conveyed to the parents simultaneously turns them into subjects of decision making (cf. Lemke 2000; 2004). What needs to be decided is whether or not the “risk” of another pregnancy is too high. Parents can furthermore decide to use prenatal testing if they are prepared to face the implications of an optional abortion. Evidently these decisions are only up for discussion because they are actively created through a specific form of knowledge practices performed during medical consultations. This form of subjectivisation is – whether it is seen as legitimate or not – a result of medical arrangements which do not exist just by accident. On the contrary, they are deliberately designed, decided, and implemented through specific actions. In chapter 8, I elaborate on precisely where these decisions are actually made, who makes them, how they are legitimised, and not least, who informs the broader public about them. For the time being the point I wish to make is that medical arrangements, like newborn screening, can be understood as subjectivisation processes to the extent to which they lay down strict rules as to how physicians and medical personnel should act upon the parents of newborns as well as how and when they do so. Empirical studies confirm this form of geneticization through the transfer of information in medical consultations. In interviews carried out with parents of children who have been diagnosed with cystic fibrosis (CF) through newborn screening, the parents describe how they thought about the recurrence risk of CF in subsequent pregnancies. A mother whose son was diagnosed with CF describes her deliberation of another pregnancy:

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“But since the risk is so high, we have pretty much decided against that. And, yes, above all, it could be healthy, then everything would be fine. But if it also has CF, then we’re starting all over again. Then we got the same worries. Then I got two CF children at home who’d maybe even infect each other with some kind of germs. Then they always are together at the hospital. So, this did indeed influence me. Sometimes I got jealous when I heard: ‘Yeah, we want a third one soon, once we’ve finished the house and all that.’ That momentarily made me somewhat jealous, because I thought: this is what is refused to me. But meanwhile, I’ve learned to live with it, that this is the way things are.” Mother of two children, whose 3-year-old son has CF.

The recurrence risk of CF during further pregnancies is always present. The interviewed woman relates this possibility to her daily life. She ponders about the implications for her family in case she had another child with CF. However, the knowledge about a specific genetic risk alone does not allow anticipating what affected couples actually decide. Grounded in interview data, it can be argued that the solutions pursued by parents of children with CF differ considerably from one another. Some women are strictly against another pregnancy, others are not. For some, prenatal diagnosis is a viable option, others categorically refuse it. Also the adoption of a child, or taking on a foster child, are possibilities which are being considered while being out of the question for others. It is impossible to determine a clear tendency as to which of these options is ultimately perceived to be adequate by parents in the respective situation. What they concretely experience as a viable solution differs widely. But in any case, through their reflection parents connect knowledge with responsibility. It is a central motive for parents to find a responsible way of dealing with the disease in their family; whatever they may actually conceive to be responsible. In relation to reproductive decisions, genetics effectively functions as a catalyst. As a result of genetic awareness it is impossible not to consider the recurrence risk of the diagnosed disease when pondering about further pregnancies. Parents ask themselves if they are able to care for the sick child to the necessary degree. What is the impact on family structure if additional children are born (even when they’re healthy)? Who in the family has to accept disadvantages, and who has to bear which consequences? It is important to emphasise that these considerations are pondered in social terms and not in genetic, as Lippman’s thesis might suggest. Yet, their inevitability, their undeniable and insistent quality results from the knowledge about the genetic heredity of the respective disease. I would like to emphasise this point the use of ANT. Bruno Latour emphasises the importance of the way in which action programmes are articulated (cf. Latour 1999b:186). His point is that the form of an articulation can change. For example, it can change from signs to matter. If this happens, Latour talks about a “delegation” (Latour 1999b:187). In addition to the “translation” into a different expression matter he also discusses a “translation” into scientific facts. According to him, a shifting down takes place towards technical artefacts and a shifting out takes place towards scientific facts (Latour

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1999b:190). Against the backdrop of actor-network theory, it can be argued that it is the articulation type of scientific knowledge which grants the statements conveyed in medical consultations their persistent quality and thus induces a confrontation with one’s genes. Along these lines it can be argued that it is a shift towards scientific facts that allows the articulation of an appeal. However, a shift in time and space enables the appealing actor to be absent. Latour explains: “Without this detour, this shifting down, we would not understand how an enunciator could be absent” (Latour 1999b:189). This argument can be taken a little further. Drawing on Foucault, it can be argued that genetic counselling works like a panopticon (cf. Foucault 1991[1975]:200). It does not even need a person to articulate an appeal, the results of an examination become effective without explicit verbal articulation. The appeal: Think about your reproductive behaviour! It does not need to be explicitly expressed. It is sufficient that a physician or counsellor points out the scientific fact of a possible recurrence risk to endow the results of an examination with enough authority to prompt deliberation. In a nutshell, there is indeed evidence for “geneticization” in the context of newborn screening, namely in a very specific respect, that is, in the area of reproductive decision making. It is again the medical consultation which plays a crucial role in this regard. When parents are told that their child has been diagnosed with a genetic disease it is also made clear to them that the same condition may reappear in a subsequent pregnancy. It is, however, important to note that reproductive deliberations are quite clearly separated from what shapes the major part of daily life for parents of children with a genetic condition. For the most part parents are occupied with providing and caring for their child. Thus, doing precisely that, means to reason in social terms about living with a genetic condition in the family.

5.3 T HE

SUBJECT OF ACTION

In her dissertation, Daniela Freitag shows that reproductive questions are of relatively marginal significance for parents of children with cystic fibrosis (Freitag 2010b:275). Instead, aspects of the care and provision for the diagnosed child are much more important. These two occupations are especially important elements of manifold subjectivisation processes. Precisely in the context of care and provision, the interrelation of knowledge and responsibility comes to the fore. Parents learn what needs to be done to achieve the most flourishing development possible for the diagnosed child. This involves learning to carry out daily therapy, the adjustment of home environment and the adaptation of life plans to the respective situation. It is a major challenge for the parents to actually apply the knowledge provided by physicians and other

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medical personnel. If a parent does not act accordingly, or even decides to divert from medical advice, they have to accept responsibility for that as well. The significance of actions performed or neglected for the flourishing development of a child with cystic fibrosis can hardly be underestimated in their subjectifying effects. Daniela Freitag argues that parents (and especially mothers) mainly define themselves in relation to how they care for their child (Freitag 2010b:279). Without doubt, the most dominant problem for parents with children with CF is how to guarantee for the best possible care for their child. The central motive is extending the child’s life expectancy through thoughtful care. This includes the adherence to medical therapies, but also the comprehensive organisation of daily life for the good of the child. In this concern it is both important to avoid infections as well as enabling the child to grow up as carefree and unrestrained as possible. Accepting the responsibility for care and support can be understood as a process through which parents subjectify themselves by creating themselves as loving and providing parents. These subjectivisation processes are supported by a medical system which provides knowledge about what is beneficial for the development of a child with a genetic illness and what is not. A mother of four children, two sons of which suffer from CF, describes her daily life with the illness. She describes how much work and how dominating daily care is for her. The effort of achieving an age-appropriate weight increase alone is considerable. However, the interviewee also mentions in the extract below how she tried to connect the medical care for her children with general child care. “Well, in times of these severe episodes for me it was all about the organisation of the illness, and in addition to it was the sorting out of daily life. And this also meant – here in (location) we didn’t have such a large flat and the kids were sleeping in a bunk bed in their room - that in the night he – he was the eldest and was sleeping on top – vomited down fountains of mucus from above. Then you had to haul down this shaking child, inhale, wash up the floor. Well, this was very labour-intensive, very labour-intensive; always being encouraging at mealtimes. And what I did, well, what brought a lot of peace to the family: I used the time of inhaling during the day for reading out loud, and that was very desired. The other two would also sit with us and ... So we read ourselves through all the children’s books. So I always had novels for kids at home and later for teens. And that brought a lot of peace and relaxation, because they would always wait for that and it wasn’t a punishment, the inhaling, but the little ones would always say: ‘Hurry up so mum can start reading.’” Mother of four children, two sons with CF, one has already died.

The themes of this narrative are not specific to parents with children suffering from a genetically caused disease, but they show up more intensely and are very distinctively pronounced. The difference to narratives about “normal” children lies in the intensity, in the dominance which is given to the motive of parental care and support.

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Especially mothers fully apply themselves to the task of being there for their child and arrange everything else accordingly. The analysis of the interview data shows, that it is of great importance for parents to compare themselves to other families in a similar situation. The comparison demonstrates to the parents how much they have succeeded in adding to the physical wellbeing of their child through their own care. As already briefly mentioned, children with cystic fibrosis often have problems gaining weight. Therefore it is visible to the naked eye how well one’s child is looked after in this regard. Other medical examinations – especially the lung function test – allow further comparisons to others. Parents who receive medical affirmation that the lung function of their child is above average, obtain implicit credentials for their own successful care. In an interview the mother of a 13-year-old boy states how important such medical feedback is for her. At the same time she presents her own success as an advantage for her son. “Alright, listen: ‘If I don’t do it, you wouldn’t be as well as you are. After all, I’m doing it for you!’ I mean, I’m happy when they [the physicians in charge] say: ‘Great Mrs. (name), he’s again one of the best.’ But he benefits, because for him it’s years of his life.” Mother of a 13year-old son with CF

Experiencing the successes of one’s own care for the child creates identity for the parents. Indeed, parents can build a positive self-image based on the experience that their own efforts result in the ability to give their child an increased lifespan and to enhance its living quality. It is crucially important to appreciate that in this regard parents mainly constitute themselves through concrete social actions which can be “measured” against the visible result of these actions. Genetics, by contrast, plays hardly any role as a cognitive reference in the described circumstances. At any rate, personal stories about being a parent of a child with CF are told and interpreted in social terms and not in genetic ones as suggested by the geneticization thesis. So, where are the traces of geneticization to be found? It can be argued that in a specific way the medical discourse on genetic causes of the disease cystic fibrosis imply in some ways the “attribution of blame”. Of course, physicians do not tell parents that they are morally responsible for the condition of their child. However, the factual explanation of genetic conditionality implies a certain form of “hereditary guilt” to the extent to which genetic knowledge establishes a cause and effect connection. Yet, none of the interviewed parents stated that they suffered from feelings of guilt derived in this way. Quite to the contrary, the fact that CF is a recessive genetic disease entails aspects of exoneration for many of these parents. This is due to the fact that the genetic mutation has to be passed on by both parents for it to affect their child. Against this background the occurrence of CF can be classified as a twist of fate for which there is no personal responsibility, since it was not consciously intended. Instead people find themselves completely unprepared in a situation which

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they did not and could not expect at all. The following interview with the mother of a 16-year-old daughter shows how she deals with the construction of guilt. “So we talked to my family, to my family of origin, and less to the family of origin of my husband, because they thought it was my fault. That’s why I was so glad we’re both to blame – quote unquote. Well, actually I don’t see this as my fault at all, but that’s the best way to put it quickly. I never felt it was my fault, I really have to say hat. Thank God, because that could really burden the whole system even more. But my husband’s family of origin saw it like that, yes. Mother of a 16-year-old daughter with CF

The extract shows that the construction of guilt based on heredity is perceived as an ascription of family members. The woman quoted above tries to separate herself from the genetic construction of “hereditary guilt”. Even though the medical discourse about hereditary patterns of recessive genetic diseases help to ease the burden of personal guilt, family members sometimes block out this knowledge and maintain their accusations, as the quoted interview indicates. As a result of this situation, couples react to such blame with a separation from their family of origin and retreat into their own partnership where they escape (at least in part) such accusations. Even if a certain extent of geneticization can be identified in the construction of guilt, it has to be noted that this aspect plays a relatively minor role in what parents perceive as problematic about their lives with the disease in the family.

5.4 O RGANISATIONAL

ARRANGEMENTS AND TECHNOLOGICAL NETWORKS

The significance of newborn screening results from the great number of people who are examined in this area of genetic medicine. Everybody who is born in Austria (and other parts of the industrialised world) starts his or her life participating in a routinely performed examination programme that aims to rule out genetic illnesses and disabilities. In this regard Austria is among the countries with the most comprehensive screening programmes in Europe (Bodamer, Hoffmann et al. 2007:440, Loeber 2007). The number of screened conditions is constantly rising and currently comprises already more than 30 illnesses. Surprisingly, the empirical analyses of the present study however shows that this rigorous screening programme does not necessarily lead to what Abby Lippman called “geneticization” (Lippman 1991; 1994). The reason is simple: Most of the screening examinations do not reveal conspicuous results. Only few cases of parents of examined foetuses and newborns are confronted with a result that indicates a genetic anomaly. All other parents, who do not have to deal with a conspicuous test result, have no (medical) reason to conceive their life or that of their child in genetic

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terms. As a result of the way in which newborn screening is organised in Austria most parents do not learn about the nature of the examination and they are therefore never aware of what the heel prick is actually for. In contrast, the majority of parents are quite aware of the reason behind prenatal ultrasound screenings. But as the interviews analysed in chapter 4 show, the way in which nuchal translucency measurement is carried out allows the screened women to delay dealing with the implications of this examination (cf. Wieser 2010b; 2011c). For that reason, they can constitute themselves as parents for whom abortion would never have been an option. I would like to emphasise that this process can be understood as a “value-rational” mind-set which allows women (and men) to subjectify themselves as parents in a way that resembles their own ideal vision of parenthood. Since most prenatal screenings remain without conspicuous results, examinations in this context only occasionally induce geneticization and therefore no associated motive to rethink one’s initial self-constituting. The situation is very different if there is an indication for the existence of a genetic anomaly. At exactly this moment the enrolment into a genetic interpretation scheme takes place. The function of the mentioned screening examinations consists in recruitment into a biomedical regime. If a conspicuous screening result is found, the question inevitably arises whether further tests should be done to verify the “preliminary diagnosis”. Then a decision has to be made. At this point of the procedure the conversion to a different medical regime becomes necessary. It is the conversion from the “regime of prevention” to the “regime of decision autonomy” (cf. Stemerding & Nelis 2006, Wieser 2006, Maier 2006). Consequently, the “informed decision” becomes the central element of medical action. A decision is prompted which ought to be made on an informed basis. In such a way the medical consultation creates a tight coupling of knowing, deciding and taking responsibility. In other words: processes of subjectivisation take place which constitute subjects of knowledge, decision and responsibility. Against the backdrop of these empirical insights, the central importance of organisational arrangements which structure medical action becomes apparent. As I have already argued, geneticization primarily takes place within specific medical contexts in which people are confronted with genetic functions and thus made into subjects of knowledge in a very specific way. It is hardly possible to underestimate the importance of the arrangements which organise medical action. I now want to move on to a further aspect which once again highlights the importance of medical arrangements (or action regimes). Hence, I inquire into the role of the applied technologies.

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5.4.1 ANT: technologically mediated action How can the role of technology be conceptualised without understanding it as a mere tool? Social constructivist approaches suggest understanding technology as something that carries inscribed action programmes (cf. Winner 1980 and critically: Joerges 1999b; 1999a; Woolgar & Cooper 1999). The problem with constructivist approaches is that they often conceptualise humans as victims, who to a large degree have lost their power to act on their own behalf. Human actors no longer have the chance to escape an action programme, once it has been inscribed to technology. As a matter of fact, tandem mass spectrometry is a very broadly applied technology. Its application ranges from geology and chemistry to medicine. The chemist Scott Van Bramer explains why this is possible. He notes that „mass spectrometry is essentially a technique for ‘weighing molecules’” (cf. van Bramer 1998:4). It is not very convincing that there is a specific agenda inscribed into mass spectrometry if it can be so broadly applied. Explaining the role of technology in the context of genetic medicine requires going beyond both the tool metaphor and the “repressive hypothesis” inspired by social constructivism. Exponents of ANT have prominently proposed a way of rethinking the role of technology. In his publications Bruno Latour puts special emphasis on the associations humans develop with technical artefacts and become new (action) units through these connections. Latour refers to these associations as “actants” (Latour 1999b:178). For Latour, action is not the ability of a single social actor who makes use of technology as an instrument. Action is rather the ability of the association of humans and technology. According to Latour, action is distributed over several network elements (cf. Latour 1999b:180). In this sense Latour refers to “technologically mediated action”. It is only the association as a unit which has the ability to act. Latour therefore argues that this association opens up new possibilities for action which did not exist without it (ibid. 177-178). It is however essential that possible goals of action are not predetermined, but open on principle. Which actor constellations are pursued for what purpose is not predetermined as Michal Callon points out. He writes: „The relationships become visible and plausible only after the event“ (Callon 1986:222). The presented argument can indeed be used for genetic medicine, with the two fields of application, prenatal testing and newborn screening, offering abundant empirical evidence. Barbara Katz-Rothman (1989) has, for example, shown that prenatal testing has created a new form of pregnancy which did not previously exist. She refers to this as “tentative pregnancy” (Katz-Rothman 1989[1986]). What she means by that is the possibility of tying the birth of a child to certain conditions, namely to the condition that certain genetically caused illnesses and disabilities can be ruled out.

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Katz-Rothman argues that this possibility also changes the relationship between expecting mothers and their respective unborn child and consequently how pregnancy is experienced. The context of newborn screening also features possible actions which would simply not exist without the introduction of new diagnostic technologies. The actor constellation “newborn screening” creates the possibility of increasing the effectiveness of treatments for screened illnesses through their early detection. This possibility is actually the primary goal of newborn screening (cf. Wilson & Jungner 1968, Andermann, Blancquaert et al. 2008). Phenylketonuria (PKU) is the classic example to demonstrate this point. If a special diet is implemented right after birth, mental retardation of the child can be avoided and a largely normal development is made possible (cf. Guthrie & Susi 1963). Critics have repeatedly pointed out that these arguments can also be formulated without using Bruno Latour’s ANT (cf. Werle 2002). Of course, I agree. With or without ANT it can be stated that due to the implementation of tandem mass spectrometry new action goals became achievable in the context of newborn screening, which were previously not in reach (i.e. before the constitution of the respective associations). In addition to the aforementioned therapeutic possibilities, early screening of newborns opens up further significant opportunities of action. The most important is the possibility of “reproductive decision making”. From this perspective there is a huge difference in whether parents learn about their child suffering from a genetic disease right after its birth or only years later as a result of a clinical diagnosis. Until a clinical diagnosis becomes established further pregnancies are quite likely. Hence, the possibility of “informed” reproductive decision making in the described form does not exist without newborn screening. Proponents of newborn screening see precisely this possibility as a reason which, from their view supports the screening of respective diseases (cf. Pollitt, Green et al. 1997). Furthermore, newborn screening opens up new action programmes which are largely considered as “not intended” and “unsought outcomes” of these tests. Examples are the identification of the carrierstatus of the tested child (as can be detected with the screening for sickle cell anaemia) or the discovery of an unexpected fatherhood of the child (cf. Plass 2010:165). Of course, all of this can be established without Latour. The problem, however, is to conceptualise the role of the technologies applied in these contexts. Latour tries to suggest conceptual instruments which allow him to understand technology not merely as a tool. Equally Latour offers a perspective to conceptualise technology not as a container of action programmes, which enfold their effects more or less coercively as previously inscribed. This view, which is easily identified as technological determinism, is rejected by Latour as well (cf. Latour 1999b:177). Latour’s solution is rejecting the attribution of the ability to act to singular social actors. Instead, he

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attributes the ability to act to associations consisting of human and non-human elements. Latour has repeatedly met harsh criticism for this suggestion since his position has been interpreted as suggesting that things could act intentionally (cf. Collins & Yearly 1992, Bloor 1999a; 1999b, Schulz-Schaeffer 2006; 2009, Weyer 2009). Even though this is in fact not what Latour actually claims, such interpretation is apparently hard to avoid. There is indeed a danger of getting lost in debates over theoretical principles and losing sight of the initial problem to be solved when discussion ANT. For this reason I would like to focus my inquiry on the question of how the applied technologies contribute to the issues of subjectivisation. As has been argued above, in the context of genetic medicine subjectivisation mainly occurs by way of people being specifically turned into subjects of knowledge, who have to make decisions for which they are supposed to accept responsibility. Getting to know others and making responsible decisions changes who human actors were before they knew each other and made important decisions. The point ANT can highlight is that neither the knowing nor the decision making would be possible without the technologies of genetic medicine (cf. Latour 1999b:190). It is important to understand that the knowledge conveyed in a medical consultation is generated through technology in a very fundamental way. It is part of a complex chain of action which in the end results in a situation where parents are called upon to make farreaching decisions. With or without ANT, these situations are not inevitable consequences of the applied technology. Instead one needs to reach a decision in the context of newborn screening – as well as regarding prenatal testing – results from social actions. Human actors establish which tests should be performed in newborns or foetuses and how parents should be confronted with the respective results. Parents are confronted with genetic knowledge in such a way that it raises decisions and makes them inescapable as well. Although the format of genetic counselling arranges for these decisions to have open outcomes (cf. Hartog & Wolff 1997; Wüstner 2003), medical action programmes, nevertheless, demand patients and counselees to know and thus create subjects of knowledge. I need to elaborate a little bit more on this issue. The “right not-to-know” is regarded as a fundamental ethical principle in the context of genetic examinations (cf. Chadwick 1997). This ethical standard is accommodated through the principle of non-directive counselling and the associated decision autonomy. Nevertheless, it can still be argued that precisely the decisions concerned here imply a demand to know. The demand is that the decisions at stake here must be made in consideration of a particular genetic knowledge conveyed by the counsellor. Only if made on this basis, a decision can be regarded as “being informed”. Expressing one’s own will is not enough for that. Below, I argue that especially in the case of newborn screening and prenatal testing, the required condition of “being informed” is based on data technologically generated during a time that already precedes the process of non-directive counselling and thus become its precondition.

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Alongside the technologically constituted configuration of genetic knowledge the significance of the applied technologies consists in the possibility to implement medical regimes with their help. In the case of newborn and prenatal screening these socio-technical regimes allow the recruitment of people for specific examinations. Against this background, it is interesting to inquire how the applied diagnostic technologies are concretely implemented and how their use has diffused across medical practice. It is therefore necessary to show what happens when new technologies are suddenly used in existing arrangements. This question is especially vital in the context of newborn screening, since a new technology (tandem mass spectrometry) has been implemented in this area without notable public awareness and consequently the respective network reconfiguration consisting in the expansion of the screened conditions remained equally concealed. For that reason the potential of this technology to make newborn screening more comprehensive, effective and efficient is largely overlooked in the public sphere. In order to address problems of this type Latour suggests the term “black boxing” (Latour 1999b:183). The point being made by Latour is that such black boxing is another form of technologically mediated action. The fact that such associations of human actors and technological artefacts as well as the reconfiguration of such networks very often elude public awareness is especially relevant when understanding these processes as the subject of political decision making. Framed as political decisions the black boxing of the reconfiguration of medical arrangements raises questions of transparency and participation (in part 2, I elaborate on this problem and discuss it in terms of “accountability”, see chapters 7 and 8). 5.4.2 Contextualisation in health provision But before I turn to collective decision making processes, which shape the implementation of new technologies, I would like to return to the recruiting function of screening examinations. The essential function of any screening programme is to classify a population. The medical data obtained are supposed to provide criteria to filter out people with particular health problems. The term screening refers to the fact that the performed tests are carried out without any concrete symptoms indicating the onset of a respective disease. Examinations like these are individually meaningful since early detection allows early treatment and, as a result of this, increased effectiveness of the treatment. Screening examinations are, however, also collectively meaningful, especially when a respective programme leads to a cost-efficient provision of public health. From a public health point of view, the goal is to encourage as many people as possible to participate in the respective screening programme. Yet, according to the WHO, all screenings should be performed on a voluntary basis and everyone who is tested should be adequately informed about the purpose of the respective examination (cf. Wilson & Jungner 1968).

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In order to achieve high participation rates, policy makers launch awareness campaigns advertising preventive screening. In the reproductive context, however, Austrian policy makers have decided to secure high participation rates by means of specific incentives. The health provision programme covering the time around birth is an example for this strategy. I am referring to the so-called Mother-Child-Pass (“Mutter-Kind-Pass”), a programme introduced in Austria during the 1970s. Its explicit goal was to reduce infant and parent mortality. An additional goal was to enhance the effectiveness of therapies through early diagnosis of the respective diseases. In the spirit of paternalistic health policy, the measures used were more concerned with financial incentives than with awareness raising and information. The recruitment principle of the Mother-Child-Pass is that those who do not take part in the scheduled examinations of the programme lose a considerable portion of the state subsidies; more exactly the so-called “increased child benefit” (cf. FLAG § 32 , § 32 Abs. 3). In Austria, the situation is still like this today. As a result of this, the Mother-ChildPass examinations have become “de facto obligatory”. The participation rate amounts to almost 100 percent (Schmidt 1978:2.20; Statistik Austria 2000). The point now is that the Austrian newborn screening programme is contextualised within the Mother-Child-Pass examinations. This means that it is carried out by persons who also perform the preventive examinations of the Mother-Child-Pass. The parents of newborns cannot always differentiate between what exactly is and what is not part of the preventive programme. In particular it is not clear what happens if certain examinations are refused. Technically the newborn screening allows the possibility of informed dissent. Therefore parents indeed have the choice to refuse the heel prick without losing state benefits. The problem in Austria is therefore not the formal regulatory framework, but the practice of how screening programmes are carried out, especially the scarce provision of information (cf. Wieser 2010d). The situation is quite similar in the context of prenatal testing. Also in this area pregnant women have the choice of passing up certain screening examinations, especially the nuchal translucency measurement (NT). However, on 29th December 2009 the Austrian Broadcasting Corporation (ORF) reported on recent amendments of the MotherChild-Pass stating that from now on NT was part of the programme and tied to the disbursement of the increased child benefit. Against this background, I conclude that it is nearly impossible for parents whose children are examined to become aware of their own choices since the respective examinations are contextualised in mandatory programmes of preventive medical examinations. It was already mentioned that the first step of the process is made in a medical regime not oriented on informed consent but on the imperatives of health provision. However, once screening leads to conspicuous results, a shift into the regime of decision autonomy becomes necessary. Both newborn screening and prenatal testing clearly demonstrate the significance of the way in which medical regimes organise time and knowledge. Medical action programmes precisely define at what

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stage and framed in which logic (prevention or decision autonomy) people become confronted with their own genetic make-up and that of their children. The applied organisational framework creates a split that separates the “run-up phase” from the “problematisation phase”. Most parents remain unaware of the reasons behind screening examinations. Parents only realise the full significance of the performed tests during the “problematisation phase” when they need to deal with conspicuous results. Another consequence of the analysed medical frameworks is the fact that new technologies for the identification of genetic conditions can spread especially fast if they become implemented in existing organisational contexts and procedures. The significance of this insight becomes fully clear when considering that in Austria, all heel prick samples of the entire country are analysed centrally in one laboratory. The introduction of tandem mass spectrometry in this laboratory has therefore reconfigured newborn screening in the whole of Austria. Due to the centralised organisation of the analysis it was only necessary to build up the know-how for this new technology at one location. Practically no changes were needed at the periphery of the network, where the heel prick is performed in order to obtain a few drops of blood from each newborn and send the blood to the central laboratory for analysis. This procedure does not demand large adjustments when the scope of the programme is expanded and can basically remain unchanged. The action programme can remain unchanged until the obtained samples arrive in the laboratory. It is only there that a few actions need to be changed, which however remain hidden from everyone else, especially from the parents of the screened babies. Certainly these circumstances have contributed to the particularly comprehensive diffusion of new screening technologies and the rapid expansion of the scope of the programme.

5.5 C ONCLUSION In this chapter, I examined concrete circumstances in which people are faced with genetic medicine and how this confrontation influences their subjectivisation processes. I argue that there is little evidence to support the claim of an all-encompassing geneticization in the context of newborn screening. There is no empirical basis for such a generalisation. However, under very specific circumstances people indeed include genetic knowledge they have obtained over the course of medical counselling in their reflections about themselves and their lives. Subjectivisation processes obtain a genetic framing mainly through the interplay of knowing, deciding and accepting responsibility. It is therefore possible to conceptualise medical consultations in terms of geneticization when, in this context, medical personnel explain genetic functions which confront people with decisions in very specific and pre-structured ways. The ethical principles of genetic medicine require

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medical personnel to apply non-directive counselling in order to present these choices as fundamentally open (cf. Wüstner 2003, Hartog & Wolff 1997, Wertz & Fletcher 1989; 2004). The main point of this medical arrangement is, however, the specific coupling between the decision to be made and the acceptance of responsibility for them (Maier 2006:182; Cox 2006). The implicit logic is that whoever is in the position to make a decision also needs to take on the responsibility for it. Secondly, I argued on the basis of my empirical data that in significant ways subjectivisation takes place in non-genetic terms even if and especially when people live with genetic conditions in their families. The results of a study by Daniela Freitag clearly demonstrate this fact (Freitag 2010b; 2010a). She has found that parents, and especially women, identify with their role as provider of care and support. The experience of successful care – materialising in an increased quality of life of the ill child – is a crucial factor for the development of a positive self-image for parents with children suffering from a genetic disease. The only indications for subjectivisation processes taking place in genetic terms could be found in relation to reproductive decision making (cf. Freitag 2010b; 2010a; Wieser 2010b). These empirical findings regarding newborn screening substantiate what was already concluded in relation to prenatal testing: subjectivisation in genetic terms does not take place as an overarching process, but only under very specific circumstances. More than anything, the crucial factor in this regard is the medical consultation, during which a specific kind of knowledge is conveyed induces a reflection on one self and one’s own actions in genetic terms. From an ANT perspective this process can be conceptualised as an enrolment into the medical logic. This medical rationale prestructures alternative possibilities to act. Although the prompted decisions are kept open on principle, an imperative that urges the individual “having to know” enfolds. The right “not to know” (cf. Chadwick 1997) is limited to a decision against a possible genetic test. The counselling, however, enforces a particular type of “having to know”. This is the knowledge of which particular alternatives to opt for or against. In such a way an “order of knowing” becomes created. It arranges precisely what has to be known and what may not be known. As I have shown, it is central that the decision processes are not punctualised to a specific situation. Instead it became clear that they are made over the course of a longer process. A multi-stage procedure can be observed in both of the studied medical practices, in newborn screening and prenatal testing (cf. Wieser 2006). In the first step, examinations are carried out which are designed to collect data specific to the examined individuals. On this basis, decisions on consecutive tests can be made in a “more informed” way. It follows that in the described medical contexts those examined are prompted to make an explicit and open decision only after they have already been tested with data-collecting methods relevant to these decisions. The Austrian newborn screening programme is performed without previous information about its

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purpose and without obtaining parental consent. This procedure can be conceptualised as a “regime of prevention” where the state decides what is to be done for the wellbeing of its citizens (and consequently takes responsibility for it). However, at the moment where parents receive the result of the respective test, a shift to another regime becomes necessary. This is the shift to the “regime of decision autonomy”. Now genetic knowledge is communicated, alternative choices are outlined and people are urged to take the responsibility for the decisions they make. As a result of this shift to another regime also the associated subjectivisation processes change. Against this background, it is possible to observe a certain transformation of who the involved individuals are. They are no longer sheltered subjects, but knowers and responsible decision makers. Similar conclusions can be drawn in relation to prenatal testing. Also in this context nearly the whole collective of pregnant women is enrolled in screening examinations (NT), which produce person-specific data used as a decisive basis for consecutive decisions. The screening examinations are integrated into a “regime of prevention” and accordingly also perceived in such a way. The shift into the “regime of decision autonomy” also in the context of prenatal testing takes place only after the initial risk assessment has already been completed. Against this background the recruiting function of the outlined screening examinations come to the fore. The application of particular technologies at a particular stage makes it possible to cover the entire population. Borrowing a term from ANT, reproduction can thus be seen as the “obligatory passage point” of genetic medicine (cf. Callon 1986). The significance of the applied technologies is that they create the (pre-) conditions for setting up a comprehensive network that allows every child born in Austria to be tested for a number of genetic anomalies. Of course, technology does not determine the social practice of the network in which it is implemented and the way technology is applied does not follow an inherent necessity. It is nevertheless possible to argue that the ways in which they are integrated are of great importance for what happens in the context of prenatal testing and newborn screening. It matters a great deal, whether decisions are based on technologically mediated scientific facts or if this is not the case. The knowledge communicated during medical consultations and thus made relevant to the prompted decisions, is for the most part technologically generated. The applied technologies allow especially, to present the conveyed genetic knowledge as specific to the person addressed (cf. Wieser 2006; Freitag 2010a). What is explained during medical consultations is not general genetic risks, but data directly applicable to the examined individual. The application regimes of newborn screening and prenatal testing organise the moment when the confrontation with the genetic make-up of one’s children takes place, i.e. how this confrontation becomes induced through medical action. The deliberation is arranged for a time where the first results of screenings are already avail-

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able and the further proceedings are inevitably decided on this basis. This arrangement consists of a “run-up phase”, where tests are framed according to the “regime of prevention”, and a “problematisation phase” where choices are made and further medical actions are taken in the “regime of decision autonomy”. What results from this arrangement is the fact that the examined individuals are at first unaware of the issues at stake. The genetic black box is only opened if the screenings show conspicuous results. The main point here is that the implementation of new screening technologies takes place without conscious awareness of the examined persons (or their parents). This is of great importance in the context of newborn screening since the number of screened conditions has grown by five times what it was in 2002 without the public being aware of this change. The role of technology here is that of increasing efficiency and simultaneous extension of the network as well as enhancing precision. The introduction of tandem mass spectrometry allows for more genetically caused diseases being detected, the cost per screened condition being reduced and the number of false-positive and false-negative cases also being reduced (cf. Pollitt 2007, Bodamer, Hoffmann et al. 2007). Since the introduction of tandem mass spectrometry, a continuous expansion of the screening programmes can be observed internationally. Against this background, the great importance of the arrangements used to integrate new technologies into the practice of genetic medicine becomes apparent. These arrangements are highly relevant for the ways in which the potentials of new technologies can develop and, in particular, for the moment when the examined people are made aware of the performed medical actions. The role of the technologies used can be best understood if they are conceptualised as part of socio-technical systems, which are to be analysed in their complex interaction rather than attributing particular effects of a network to isolated elements. Hence, it is not technology which causes significant effects, but the networks in which the respective technology is integrated. Subjectivisation takes place through the integration in specific networks constituted by human actors alongside technical artefacts and apparatuses. These elements of the network enfold effectiveness through their organised interaction. The significance of new technologies can develop rapidly if they are implemented in existing networks they consequently reconfigure. Such reconfiguration can, however, happen in a way which keeps the changes concealed from public perception, as the example of newborn screening demonstrates. Medical arrangements do not follow inherent logics or necessities, but they are the result of human actions and collective decisions which always allow for alternative actions and decisions. The scrutiny of the expansion of newborn screening and the accountability of the respective health policy decision will be dealt with in part 2 of the present study.

Part 2: Making bioscientists accountable

6 New conditions for the sciences of life

The term accountability means making decisions transparent. It is primarily used for political decisions, which should be explained to the public. The idea behind accountability is the request to outline the entire process of decision making, i.e. to make transparent which evidence and knowledge basis have been used for a decision, what arguments and interests have succeeded during negotiations as well as which attitudes and values have informed a decision. The demand for accountability has become a decisive factor for publicly funded science in general and for life science research in particular. Scientists are urged to explain why they need public funding for their research. Another driving force behind the request for accountability is that increasingly the public feels affected by technoscientific developments and therefore wants to know the consequences it has to expect from these developments (cf. Nowotny 1998:8, Nowotny 1999). Such desire for participation and transparency is broadly discussed in STS literature (cf. Wynne 1993; 2006; Irwin 2006; 2008; Jasanoff 2003b; Levidow 2007). A general sciencepolicy trend can be noted that seeks to encourage and stimulate scientists to provide such information. One example of this development is the encouragement to disseminate research results widely, such as is requested in virtually all calls for grant proposals. The public should be able to learn what research has been supported with tax money and what results it has produced. Technology controversies that have led to sceptical attitudes towards science and technology are a particularly strong driving force behind efforts to encourage accountability. In the UK, especially the BSE crisis is an example for this situation (cf. Irwin 2006:308). In Austria the controversy about governmental plans to build power stations in Zwentendorf and Hainburg have mobilised public requests to know how and on what grounds such decisions are made (Grabner 1999; Seifert 2002 and Wieser 2010c). Internationally, the list of accidents and catastrophes which fuel public scepticism in relation to techno-scientific developments is long: Sewezo, Chernobyl, Bobahl, Exxon Valdez etc. (cf. Nelkin 1992; 1995; Bauer 1997[1995]). Only

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recently, two catastrophic events have added to this list: the accident on the oil platform “Deep Water Horizon” and the reactor explosion in Fukushima. People who feel affected by science and technology want to get involved. The demanded engagement not only aims at transparency of collective decision-making, but also at participation in the processes of design and use. Meanwhile an impressive number of participatory methods are available for the engagement of the public (cf. Joss & Durant 1995; Rip, Misa et al. 1995; Fischer 1999; Joss 1999; 2005; Joss & Bellucci 2002; Felt 2003; Hagendijk & Irwin 2006; Abels 2007). Also, in Austria experiences were made with citizen participation in projects related to the life sciences. While participatory processes are geared towards the ideal of direct democracy, accountability corresponds more closely with representative democracy and parliamentarism. Another difference is that the participatory processes are usually performed only on particular occasions using well-selected show cases. Accountability, however, is a principle that is applied to all collective decisions. The request to provide information about the basis for decisions is hence a general demand. However, participatory methods and accountability practices are not competing principles, rather they are complementary to each other, not least because participation depends on the access to information and the knowledge-basis used for decision making. Against this background, the initiation of ELSA programs can be seen as a response to the request for accountability and participation. The integration of the humanities and the social sciences into large bioscientific research programmes is supposed to make the latter more transparent and accountable in order to endow sciencepolicy decisions with more legitimacy and assertion-power. On the one hand, the goal is to increase the accountability of the decisions on why areas such as the modern life sciences are sponsored with public funds. On the other hand, the goal is also to enhance the accountability of the concrete research practice in the life sciences. Hence, the second objective is to open up the doors of the ivory tower and provide insight into how bioscientific research is actually carried out. In such a way, it should become transparent what exactly is done in this area and how scientific findings are subsequently applied. On an international scale, a distinctive science-policy trend can be observed aiming to create incentives that encourage scientists to stand up for their own stake (cf. Jasanoff 2003b; 2005; Irwin 2006; 2008; Maasen & Lieven 2006; Kurath 2009). Hence, it should not be science-policy makers who explain the reasons why bioscientific research should be funded, but the researchers themselves are urged to explain just that to the public. I interpret this encouragement to provide accountability as a specific strategy to govern scientific practices. It is a strategy that targets the behaviour of the researchers and thereby shapes the processes that make them to who they are.

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In this second part of the present study, I draw on the Foucauldian subjectivisation concept in the following way. The notion accountability is at the centre of my analysis. Using this focus, I analyse processes that subjectify bioscientists and physicians of genetic medicine by encouraging them to become subjects, which give an account of themselves and their work. This is the central starting point for the presented argument. Of course, the encouragement to demonstrate accountability only becomes fully effective if bioscientists actively contribute to it. I develop my argument in the following way. First, I providing a theoretical framework based on relevant STS literature allows me to situate the concrete accountability practice in a broader context. In such a way, I introduce the second part of this study with a description of the general framework in which scientific practices take place and how this has changed in recent times. In chapter 7, I recall the historical context, which has led to the initiation of ELSI programmes in the United States and ELSA programmes in Europe. From this perspective, ELSA research can be interpreted as a response to public controversies. Along these lines, I explain the context in which the call for accountability has become a major driving force of science-policy. In chapter 8, I then compare the accountability practices in the United Kingdom and in Austria regarding their respective newborn screening programmes. This comparison allows me to highlight significant differences between these two countries and to scrutinise the reasons that made accountability so important. Thereby, I draw on Sheila Jasanoff’s “civic epistemology” in order to theoretically conceptualise the observed accountability practices (cf. Jasanoff 2005). In chapter 9, I continue my analysis of performative aspect of accountability and outline, how bioscientists and physicians of genetic medicine carry out boundary work in relation to the interviewing social scientists. I conclude part two by pulling together the presented arguments in chapter 10 which allows me to continuously elaborate on the analysis of subjectivisation processes that constitute experts of genetic medicine as knowledgeable, accountable and responsible subjects.

6.1 S CIENCE

IN TRANSITION

The ivory tower is a broadly used metaphor to characterise science, which classifies scientific knowledge production as having no practical relevance. Outside an elitist circle of experts – so the image suggests – scientific knowledge has little significance. There are many versions of this story. They have become stereotypes as the absentminded professor and the impractical nerd. The same motif shines through the constructed dichotomy of theory and practice. Today, however, the demand that science has to solve societal problems has become a commonplace. Self-indulging scientific knowledge production may be an ideal from previous times, but today, that alone does not suffice anymore.

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The call for more practical relevance and problem orientation can also be found in the promotion of interdisciplinary research (Friedrichs 1999:18). The collaborative interplay of different perspectives was particularly endorsed with regard to the problem solving capacity of science. Since about the 1970s, there is a growing number of publications on this issue (Lenhard, Lücking et al. 2006:342). In addition, the call for “trans-disciplinary” research has recently become popular. This term stands for an approach that encourages scientists not merely to cross boundaries to other disciplines, but also to areas which lie beyond the borders of academic science (Mittelstraß 2001:250; Burger & Zierhofer 2007:27). In their book “The New Production of Knowledge” Michael Gibbons, Camille Limoges, Helga Nowotny and colleagues (1994) have posed a broadly discussed hypothesis. Gibbons et al. suggest that scientific knowledge is increasingly produced in contexts of its application and together with non-academic actors. Moreover, they argue, science does no longer follow exclusively its own rules, but it also has to justify its claims against societal criteria and particularly needs to demonstrate its contribution to the solution of problems relevant to society. Against the backdrop of these changes of scientific knowledge production, Gibbons et al. talk about a “mode 2 science” which as a result new forms of quality control leads to “socially robust” knowledge. To achieve social robustness, it is not only required to sustain peer-review of fellow scientists, but in addition scientific knowledge has to bear up against critical assessment of actors outside of the scientific community. Especially the role of the public is important, which demands societal relevance and problem solving capacity (Gibbons, Limoges et al. 1994:7f; Nowotny 1999). In their second book, Helga Nowotny, Peter Scott und Michael Gibbons (2001) have elaborated on this aspect and especially emphasise public requests of “accountability” (Nowotny, Scott et al. 2001). In order to fully appreciate what is conceived to be new can be best understood if contrasted from what was there before. I therefore recall classical sociology of science literature in order to explain the conception of scientific knowledge production which has now become superseded by mode 2 as Gibbons, Nowotny and their colleagues claim.

6.2 T HE

CLASSICAL ETHOS OF SCIENCE

The claim to a new form of scientific knowledge production (Gibbons, Limoges et al. 1994 as well as Nowotny, Scott et al. 2001) is relevant not least because it calls into question the ethos of modern science. The American sociologist Robert Merton (1996[1942] has summarised the classical paradigm of scientific practice in his famous essay “The Normative Structure of Science”. According to Merton, it is only possible to talk about knowledge, if reliable predictions can be made, which can be assessed empirically and are logically consistent (Merton 1996[1942]:40). In order to obtain such type of knowledge, for Merton it is necessary to fulfil four institutional

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imperatives: universalism, communism, disinterestedness and organised scepticism. Altogether these imperatives constitute the ethos of modern science (ibid.). According to such understanding, scientific knowledge is universal, i.e. it needs to be valid always and everywhere, and must neither depend on the person which has produced it nor on the place, the culture or the political system in which it is articulated. Using the term “communism”, Merton claims that scientific knowledge is a common good that belongs to everybody. It is a product of social collaboration of the communality. Along these lines it is unjustified to understand scientific knowledge as a personal possession. Disinterestedness stands for impartiality and altruism in the persuasion of new insight. Merton talks about the independence of the discovered knowledge from personal benefits to the researcher. The best way to safeguard this criterion is through the public and verifiable character of science as it results from competition with others. This argument leads Merton to peer-review. He writes: “The translation of the norm of disinterestedness into practice is effectively supported by the ultimate accountability of scientists to their compeers” (Merton 1996[1942]:47). For Merton it is clear, scientists are not pledged to the lay-man (such as for instance lawyers indeed are), but to disciplinary colleagues alone. Taken together Merton’s ethos leads to what he calls “organised scepticism”, to which scientific claims are systematically exposed. For Gibbons, Nowotny and their colleagues, Merton’s conception of science represents mode 1. They contrast this framing of science with what they identify as mode 2. With that, Gibbons and others do not only refer to the increasing importance of extramural research institutions, but also to industry as a key player in scientific knowledge production (cf. Etzkowitz & Leydesdorff 2000; Etzkowitz, Ranga et al. 2008). One of the main arguments for the mode 2 approach observes a transgression of the boundary between scientific research and economy. However, not just a crossover to economy is stated, but also to politics and the public sphere. In such a way, Gibbons et al. do not only oppose Merton, but also Niklas Luhman, for whom science is an auto-poetic sub-system. According to Luhman, the key function of science is to produce knowledge and in that it owes justification just to itself (Luhmann 1992[1998], Maasen & Lieven 2006:400). Societal relevance as economic utility With their claim, Gibbons et al. (1994) and Nowotny et al. (2001) are not alone. Also Funtowicz und Ravetz (1993) have postulated similar developments using the term “Post-Normal Science”. Ziman (1995) suggested the notion “Post-academic Science” and Etzkowitz und Leydesdorff (1990) developed their concept of “Triple Helix” to describe respective matters (cf. Etzkowitz & Leydesdorff 1990; Funtowicz & Ravetz 1993; Ziman 1995). All these conceptions share the claim that new forms of scientific knowledge production bring about a knowledge endowed with higher societal relevance and robustness (Bammé 2004:14).

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It is, however, not always clear what kind of problems are supposed to be solved, who defines them and what precisely their societal relevance is. Obviously, the answers to these questions imply a normative grounding. Common versions draw on the values of environmental protection, public health, public participation, social justice, and other social values. There is, however, also a less idealistic normative grounding that defines what societal relevance would mean, namely: economic growth. With that I turn to the “economisation” scientific research (cf. Mirowski & Van Horn 2005; Mirowski & Sent 2008; Mathieu, Meyer et al. 2008). There cannot be any doubt about the science policy goal that public investment into research and development (R&D) needs to contribute to economic “competitiveness” as the “Lisbon Agenda” prominently requests (Europäischer Rat 2000). Science has been identified with a key role in the “knowledge based economy” (Harris 2001, Godin 2006) and the future development of national economies. These political agendas significantly shape how science is being carried out. The effects are, firstly, the creation of a need for legitimization. More and more, scientists need to justify their own work in relation to economic goals. Gibbons et al. (1994) argue accordingly that it is not any longer sufficient to live up to inner-scientific criteria, that is, to assess as to whether research findings are “true” and accordingly sustain peer review. Today, science has to meet criteria, however not only criteria of the scientific domain. The criterion of “societal relevance”, however, is most of all measured in economic terms: is there an economic benefit of the newly gained knowledge? Is it possible to develop products, claim patents, found spin-offs and does it create jobs? Does it contribute to national competitiveness and does it help to keep industry in the country? Especially in higher education, the answers to these questions have become the main currency. Scientific quality criteria are no longer sufficient, but it is necessary to meet political agendas which lay outside of the sphere of classical academic science. It can be argued that science is not exclusively determined by economic goals. Societal relevance is also a matter of environmental and health-policy goals. Also issues concerning migration, social justice, inner security and many more are certainly also crucially relevant for society. Not everything can be translated into economic terms and indicators, of course. Yet, it is still the case that also these wider societal problems are connected to political agendas which lie – in the classical understanding – beyond the sphere of scientific enquiry which merely strives to determine whether or not a claim is “true”.

6.3 W HAT

IS ACTUALLY NEW ?

The mode 2 thesis has also received challenging responses from fellow STS scholars. For instance the German sociologist of science Peter Weingart has critically reviewed

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the mode 2 hypothesis. His first objection is that the observed economisation and orientation of societal benefits is obviously not as new as Gibbons, Nowotny and others have suggested (Weingart 1999b:49). Already in the 1970s the observation of a “finalisation of science” was made, which has also claimed a tendency of increasing utilisation of scientific research for economic (and other) purposes (Böhme, Van den Daele et al. 1973, Krohn, Böhme et al. 1976, Schäffer 1983). “What has actually changed?” Weingart critically asks. In order to answer this question, I suggest to henceforth distinguish between a) the epistemological aspects of producing scientific knowledge, b) the alignment with science-policy agendas and societal goals to which scientific knowledge is supposed to contribute, and c) the communication with nonacademic actors (politicians, journalists, and members of the public) regarding the achievements and implications of scientific activities. Weingart argues that the epistemological core of scientific knowledge production has hardly changed. Peer review is still the central instrument for quality control (Weingart 1997:609). If scientific statements should be classified as “true”, they still need to conform to the rules that were already effective in mode 1 science. Regarding economic goals of scientific inquiry, Weingart argues that today, they obviously attract science-policy makers quite strongly (Weingart 1997:592). However, societal and economic utilisation is also by no means as new as one might think. Also with regard to science-policy it can be shown that these goals have not just recently been added to the agenda. On the contrary, they have been a central characteristic of science-policy goals for quite some time (Bush 1960[1945]), even if this policy has repeatedly met opposition (Schäffer 1983, quoted by Weingart 1997:592; Weingart 1999a). Thus, the question remains whether the communication about scientific research and its societal purposes has changed. In other words the question is: how do scientists explain their work in public? Is there a new way of doing so? And is it new that exactly in this context there is an increasing emphasis on societal (and economic) utility? Also in this regard the answer may be surprising. It is indeed the case that at the turn of the 19th to the 20th Century scientists and engineers have tried to demonstrate the societal relevance and the cultural value of their achievements (Wilding 2000:88; Felt 1997; Filla 2001). The history of science and technology gives a vivid account of a time full of manifold attempts to demonstrate the cultural and economic benefit of science and technology to societal actors outside one’s own peer community and societal elites (Dietz, Fessner et al. 1996:4). In sum, Weingart argues that regarding quality assessment of science, the claim of Gibbons, Nowotny and their colleagues is unjustified. Moreover, what supposedly constitutes a new mode of scientific knowledge production is neither new as a science-policy agenda nor as a way in which science communicates to the public. But if not new, then at least the latter two are valid observations.

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However, rather than challenging the newness of these observations, it is a lot more meaningful to inquire into the circumstances and factors that contributed to a development which brought science to create legitimacy from its societal utility. My argument is that scientists are increasingly ambitious to convince non-academic actors about the societal utility of their work, in order to mobilise financial resources and political support for their own research field.

6.4 T HE

DISTRIBUTION OF SCARCE RESOURCES

The cutbacks and re-distribution of public funds bring scientists under pressure (Bammé 2004:205, 224). The increasing enrolment of scientists in utility discourses is quite apparent in their struggles for public funding. With is historical analysis, the American STS scholar Thomas Gieryn (1999) shows how scientists have repeatedly tried to foreground the utility of their own research in order to obtain a better position in the competition for scarce resources. For instance, scientists have tried to capitalise on their contribution to the US victory of the Second World War. They tried to position this fact as an advantage over competing academic disciplines (Gieryn 1999:67; Bush 1960[1945]). Gieryn explains that after the war most natural scientists preferred not to be funded under one common framework together with their colleagues from the social sciences. For that purpose they articulated their arguments against their integration with the social sciences under the “National Science Foundation” (NSF). As Gieryn notes, that this happened actually twice, at the end of the 1940s and once more during the mid-1960s (Gieryn 1999:65-114, 66). Another example for the effects of drastic cutbacks of research funds can be found in the time of the Thatcher administration in Great Britain (Löffler 2000:16). As a reaction to her science-policy, British scientists joined together to lobby for their case. This was the birth of “public understanding of science” (PUS) (cf. Irwin & Wynne 1996). In response to Thatcher’s cutbacks in the 1980s an initiative of wellknown scientists strived to convince the public how crucially important science is for competitiveness, innovation, prosperity, life quality, the cure of diseases, mobility, telecommunication and many more achievements that would not be possible without the accomplishments of science and technology. Since this time the PUS idea became a central element of science communication and science policy far beyond the United Kingdom. Ever since this time it has certainly influenced how science is presented in the public domain (Irwin & Wynne 1996). Sabine Maasen and Oliver Lieven take this development further. Science communication is no longer merely an initiative of scientists, but meanwhile the engagement with the public domain is taken on by science-policy makers which made it to an integral part of publicly funded research. Based on their critical analysis of this development, Maasen and Lieven especially

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interpret the demand for accountability (and trans-disciplinary research) as a strategy of neo-liberal science-policy (Maasen & Lieven 2006:407).

6.5 C RITICISM

AND CONTROVERSIES

Apart from discussing struggles over scarce resources, I would also like to recall another aspect, in order to add another reason why scientists try to foreground in public the societal utility of their research. An important reason can be found in technoscientific controversies. The history of science and technology not only tells a story about discoveries and inventions, but it also tells many stories of criticism and controversies. Also, recent history shows that scientists are especially ambitious to demonstrate their ability to contribute to the solution of societal problems when precisely this solution is called into question. Thus, scientists react to societal agendas which lie essentially outside of the core task to produce scientific knowledge in the narrow sense. The criticism of science and technology often aims at what is perceived as a reductionist problem framing. Too much is left out, so the critics claim, what is, however, essential for a sound solution to societal problems. Especially the neglecting of experiential knowledge and non-scientific expertise is criticised as inadequate and identified as a reason why techno-scientific projects fail (Paine 1992, Wynne 1996a). Criticism and attempts to overcome this situation are often initiated by (social) scientists themselves. Scientists and their colleagues from the social sciences and the humanities are also proponents of trans-disciplinary research, promoting the integration of non-academic experts and practitioners in order to close the gap between theory and practice (Pregernig 2006:446; Lieven & Maasen 2007:35). However, interand trans-disciplinary research is not just a reaction to criticism and controversies. It is also a chance to deal with societal problems using scientific research more effectively. Altogether, the described circumstances contribute to a development that has led to a broadening of the process of scientific knowledge production. More actors have been enrolled and collaborative models of scientific inquiry have been explored bringing together researchers from various disciplines and crossing the boundaries to non-academic actors. The life sciences are a prime case, but not the only context, in which the observed development in the production of scientific knowledge can be studied.

7 ELSA as a heritage of public controversies

The common narrative about the emergence of ELSI research casts James Watson – the first director of the Human Genome Project (HGP) – as the “inventor” of the study of the ethical, legal, and social issues of genomics (cf. Marshall 1996:488; see also McCain 2002:113). Obviously Watson had drawn on ideas that had already been discussed at the time and, therefore, his ELSI idea was not a genuine invention. Watson’s accomplishment was to make ELSI an integral part of the HGP and to reserve 3% of the Department of Energy (DOE) funding and 5% of the National Center for Human Genome Research (NCHGR) at the National Institutes of Health (NIH) funding for this task (Marshall 1996:488; Everson 2007:147 and Gannett 2008). By the end of 2001, altogether 100 million US$ had been spent for the ELSI Programme. Lauren McCain notes: „This figure justifies ELSI’s title as the ‘world’s biggest bioethics program’” (McCain 2002:112). Many commentators have argued that Watson’s suggestion was a strategic move to secure funding the HGP; considering that he was asking for nothing less than 3 billion US$ (McCain 2002:113-114, CookDeegan 1994:248, and Wexler 2003:406). The US-American ELSI programme has been criticised ever since it came into existence, not only for its apparent instrumentalism, but also for its modest impact on policy making (e.g. Yesley 2008, see also Fisher 2005). At first the British Welcome Trust decided that the UK would need its own efforts to study ethical, legal, and social issues precisely in order to make them more policy relevant (Wellcome Trust 1998). In order to do so, the Welcome Trust suggested a much stronger role of the social sciences as they have played in the US-American ELSI programme. In the early years of the millennium, a number of other European countries followed and initiated their own programmes to study ethical, legal, and social aspects (ELSA) (Nelis, Reddy et al. 2008). Austria has shadowed this international trend and made ELSA part of its genome research programme (GEN-AU), launched 2001 (Kemper 2010:15). But why did it seem necessary for Austria to conduct its own ELSA programme considering that there were already so many programmes running internationally?

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My answer to this question is that the reasons for an Austrian demand can be found in the biotech controversy of the 1990s. Thus, I argue that the Austrian ELSA programme can be interpreted as an institutional response to substantial acceptance problems with bioscientific research and its applications. I shall recall the events of this period to explain the circumstances in which ELSA came as an answer to a social problem resulting from governmental policies. In such a way, I strive to examine the circumstances leading to the emergence of ELSA research in Austria. Above all, I shall argue that ELSA became an integral part of the Austrian genome research programme because this was seen as an appropriate measure to secure public acceptance of governmental science policy investments.

7.1 S TARCH P OTATOES On 10 May 1996, the Austrian Federal Ministry for Health (BMG) was notified about an illegal deliberate release of genetically modified starch potatoes to which it reacted with a complaint of offence. Only two days later all 8000 potato corms were removed from the soil. Also, the local branch of Friends of the Earth pressed criminal charges against the company responsible for the field trial in Absdorf, a village close to Vienna (Grabner 1999:292). The environmental activists knew how to attract media attention and safeguarded the area announcing that they wanted to inform the local farmers about the dangers of such trials (ibid.). In bold letters, the Austrian public was told about this apparently illegal field trial. The effect was enormous. Only three days after it had become public, on 13 May the Minister for Health announced a national moratorium for deliberate release of genetically modified organisms (GMOs) (ibid.). The role of the media was crucial. Especially the largest Austrian newspaper took sides and ran an anti-GM campaign resulting in substantial mass mobilisation (Seifert 2002:164). This process boosted anti-GM groups who initiated a parliamentary petition (“Volksbegehren”) on the subject. This public appeal was held in spring 1997, and with 21.23 % of the elective population in support, it evolved into the second most successful “Volksbegehren” in Austrian history (BMI).1 The government could not ignore the outcome of this democratic process and subsequently adopted a rather restrictive GM policy (Seifert 2002:189). Also, internationally, Austria became known as the critical voice in the European choir (Seifert 2002:221, see also Grabner 2000). The political instrument “Volksbegehren” deserves some further explanation. As the Federal Ministry for the Interior states: “The Austrian legal system is endued with three different instruments of direct democracy: Referenda (‘Volksabstimmung’), 1

Source: http://www.bmi.gv.at/cms/BMI_wahlen/volksbegehren/files/VB_alle_Ranking_ aktuell.pdf last access 16.5.2011

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public opinion polls (‘Volksbefragung’) and public initiatives (‘Volksbegehren’)“ (BMI; emphasis original). The first of the mentioned is the referendum (i.e. a plebiscite), an instrument through which a political decision is delegated to the whole of the elective population. A referendum is used to ask whether or not a law as passed by the parliament should actually become effective (BMI2). Hence a referendum is an instrument to overrule the parliament. The parliament must accept the outcome of the vote. This instrument is used when public support for governmental policies becomes significantly questioned. A softer version of a referendum is the so called “Volksbefragung” (public opinion poll). It is similar to a referendum although the result is not binding. The website of the Ministry elaborates: “The instrument of public opinion polls was implemented in 1989. To date, no public opinion polls have been carried out.” (BMI3). One is not taken by surprise by the fact that, so far there has not been an occasion, on which, the benefit of asking the people became apparent, when at the same time, the outcome was not binding. The purpose of the “Volksbegehren” is different from the former two instruments. A “Volksbegehren” can be used to set the agenda in parliament. If a “Volksbegehren” reaches a certain threshold (100.000 supporting signatures; about 1.58% of the elective citizens)4 the parliament has to discuss the issue and act upon it (BMI5). The instrument is used if the government ignores a particular issue or disregards public protests. Not only the opposition can campaign for a “Volksbegehren”, but also nonparliamentarian groups or even individual citizens can do so to exercise pressure on the government – provided that they win 8.032 fellow citizens (about 0.127% of the eligible) to support their proposition to initiate such a parliamentarian petition. If successful, a “Volksbegehren” is a rather powerful political instrument. As a matter of fact, it can lead to a subsequent referendum. History has shown that both instruments (especially if combined) can change governmental policies. A number of such events were particularly effectual and have become a prominent reference points in Austrian political history. In order to understand, why also the anti-GM “Volksbegehren” was such a powerful event I shall recall an earlier public controversy that resulted in a defeat of the government at the time.

2

Source: http://www.bmi.gv.at/cms/BMI_wahlen/volksabstimmung/Ueberblick.aspx; last

3

Source: http://www.bmi.gv.at/cms/BMI_wahlen/english_version/Instruments_Democrac.

4

In 2008 6.333.109 citizens were eligible to vote the Austrian parliament, which I took as a

access 16.5.2011 aspx; last access 16.5.2011 basis for this calculation (BMI http://www.bmi.gv.at/cms/BMI_wahlen/nationalrat/2008/ End_Gesamt.aspx; last access 16.5.2011). 5

Source: http://www.bmi.gv.at/cms/BMI_wahlen/volksbegehren/Volksbegehren.aspx; last access 16.5.2011.

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7.2 A NTI - NUCLEAR

PROTESTS AND ENVIRONMENTAL CONCERNS

During the 1970s anti-nuclear protests grew all across the Western world and so they did in Austria. Initially a very small group of people (mostly scientists by trade) started to articulate their concerns in public. Over time, the group became bigger and resulted in a movement campaigning against nuclear energy. Their explicit goal was to preclude the first Austrian nuclear power station that was planned in a village at the river Danube called Zwentendorf. Gradually protests became bigger and more powerful. Eventually the decision was made that the people should speak. On 5 November 1978, a majority of 50.47% voted against the civil use of nuclear energy, and thereby determined that the nuclear power station which was meanwhile fully built should never be switched on (BMI). This was a massive political defeat for the government at that time (cf. Seifert 2002:259) and on top of that, an enormous waste of tax money. For the anti-nuclear movement, however, it was a colossal victory. The government had to give in and accept the will of the people. As a democratic process, these incidents were most significant, and they are still effective today (Seifert 2002:138). Not only is Austria nuclear-energy free to this day, but also Zwentendorf became a show case for the power of the public and for direct democracy. Not much later, in 1984, environmental campaigners mobilised the public again. Once more these protests prevented the completion of a power station. This time it was a hydroelectric power station using Danube water near Hainburg, but the site where the power station was planned to go on stream had been found to be an ecologically sensitive floodplain forest. Again the government had to retreat from its energy policy plans and once more Austria could experience the political power of the people. In March 1985, a parliamentarian petition was initiated by environmental groups (BMI).6 It gained 353.906 supporting votes. Again protests were powerful enough to change governmental plans. Both of these protest movements have changed the Austrian political landscape significantly. Commentators have noted that together Zwentendorf and Hainburg have triggered the emergence of the Green party in Austria which has established its place in the Austrian political landscape ever since (cf. Nowotny 1979). Beyond that, it has become clear to everyone, that public protests can develop political momentum that can effectively change governmental policies.7

6

Source: http://www.bmi.gv.at/cms/BMI_wahlen/volksbegehren/Alle_Volksbegehren.aspx;

7

Seifert notes, that the conflict was successfully framed as opposition against “those in

last access 17.5.2011. power” (cf. Seifert 2002:259).

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Against the backdrop of these events, the political weight of the anti-GM “Volksbegehren” appears in a different light. It goes without saying that the government at the time wanted to avoid another political failure and not invest in a technology which causes public protests and uninvited participation (Seifert 2002:138). Accordingly, the government was more open to new forms of public inclusion. It was precisely during these times, when the Austrian genome research programme was designed and decisions to allocate public funds for it were made. Against this backdrop, the integration of an ELSA programme into genome research can be explained as a result of a larger development in the Austrian political landscape, but its significance (at the time) can hardly be underestimated.

7.3 L ESSONS

LEARNED ?

The described developments can be interpreted positively, since Austrian policy processes have seemingly become more inclusive for forms of direct democracy and public participation. From the governmental point of view, however, the conclusions cannot be as enthusiastic. Public participation was after all non-invited and turned out to be quite disruptive for the initial policy plans (cf. Seifert 2002:253, 259). My own conclusion from the described development is that the reason why ELSA became part of the Austrian genome research programme clearly is to secure acceptance (also called “social robustness”) of the then largest governmental science policy initiative (cf. GEN-AU8). This framing can be traced in presentations (and calls for proposals) of the programme. A second argument for my conclusion derives from the results of an empirical study I have recently carried out. Many Austrian ELSA researchers sensed a certain expectation (to engineer acceptance and to promote genome research) social scientists are confronted with when interacting with bioscientists during their empirical research (for more detail on the study “Doing ELSA” see my other publications: Wieser 2011a and 2011b). Discussing these conclusions with international colleagues, I was frequently asked, why I would draw such a negative picture. Why focus on the instrumentalism when there are also indicators of a positive development suggesting a more inclusive science policy model? I have taken this comment seriously and will try to give a thorough answer.

8

Source: http://www.gen-au.at/content_index.jsp?id=21&base=foerdern&lang=de; last access 17.5.2011.

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7.4 R EPORTING

FAILURE

During recent years, support for public participation can be noted in many European countries (cf. Irwin 2008; Levidow 2007, Hagendijk & Irwin 2006, Felt, Fochler et al. 2003a; Rip, Misa et al. 1995; Edge 1995). This general trend has been interpreted as a feature of a new mode of conducting science. Gibbons et al. (1994) and Nowotny et al. (2001) argue that today it is not sufficient for research to meet inner-scientific quality criteria (peer review). In addition, science must prove its societal relevance and give account of its accomplishments and potential risks (see chapter 6 for a review of the literature on this issue). Also in Austria, different initiatives can be found in which the public was invited to engage into the deliberation of science and technology. Genome research was among the topics chosen for such participatory initiatives. The assessment of these events arrived, however, at rather critical conclusions. Aiming high and certainly willing to learn from other countries where deliberative methods had been successfully practiced, also Austria wanted to gain experiences with public participation. Two events were held to deliberate genome research (one on genetic testing, the other on genetic data), but both evaluation reports were rather critical. Both events were found to have failed to effectively communicate the results to relevant decision-makers (cf. Felt, Fochler et al. 2003b and Bogner et al 2004, see also Meili et al. 2004). Already in 1997, a consensus conference was conducted, but no success could be reported (cf. Nentwich, Bogner et al. 2006; see also Felt, Fochler et al. 2003b; Seifert 2006 and Torgersen 1999). Something was not working. But, what are the reasons for the apparent difficulties with public deliberation? My own answer to this question is that methods of public engagement and participation cannot simply be imported from other countries (cf. Felt, Fochler et al. 2003b and Bogner 2004). These methods require a particular context in order to develop their full potential. I support my argument with Sheila Jasanoff’s concept of “civic epistemology”. Jasanoff argues (2005) that the ways in which political decisions are made and how the knowledge basis that serves as a foundation for these decisions becomes credible, depends a great deal on the political culture of the given society. This is precisely the reason why modes of deliberation cannot simply be imported from a country with a different political culture. This explanation goes beyond individual failure suggesting that if done in a better way, the chosen method of engagement and deliberation would have worked in the Austrian context, too. I will come back to Jasanoff in the concluding section of my paper, but first I shall discuss how Austria tried to learn from Germany.

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7.5 E NQUETE - COMMISSION There is another event relevant for the issue at hand. Once more, I recall the incidents concerning the biosciences during the 1990s in Austria. Preparations go back much further than the public controversy which peaked during 1996 and 1997. The government had acknowledged the significance and potential of modern biotechnology and genome research, before they became the subject of public controversies (Grabner 1999:135; Seifert 2002:97). Austria wanted to be part of promising developments and secure its place in an allegedly emerging bio-economy. Therefore, it sought after existing expertise which could be expanded if public investments were allocated properly. In this phase there were also prominent voices aware of a potential controversy. These critical voices came from all parties including those of the coalition government at the time. These early concerns were lined up with other parliamentarians who had an interest to develop further Austrian democracy. Inspired by the German Bundestag Johanna Dohnal, Ewald Nowotny, Lothar Müller, Heinrich Neisser, Christian Brünner and Harald Wosihnoj were the key proponents of the so called Enquete-Commission (EC) (Seifert 2002:140; Grabner 1999:182-185; 229-268). The EC is a method to expand parliamentarian deliberation by including scientific experts and stakeholders representing interests of various social groups. Enquete-Commissions had been practiced numerous times in Germany, including the design of a law on genetic technologies (cf. Catenhusen & Neumeister 1987) and seemed to be the right “tool” to design the Austrian Gene Technology Act. Receiving support across all political camps the EC operated on a solid parliamentarian basis and successfully integrated a broader set of societal actors. However, the enterprise has been found to be a failure once again (cf. Seifert 2002, Grabner 1999). On the evening before the results of the EC were presented in parliament, the then Austrian Minister for Health – Michael Ausserwinkler – presented his own draft for the Gene Technology Act live on TV (Grabner 1999:271; Grabner 2000:179; Seifert 2002:144). This gesture was significant. Presenting his own draft of the law he demonstrated unmistakeably that the result of the EC was nothing to him. It could not be demonstrated more boldly that the Austrian government does not take advice, not even from the parliament (even though members of the governmental parties had taken the lead in the EC). This incident shows a disregard of deliberation. Not only did it disregard the public (consisting of scientific experts and other stakeholders) as a relevant actor of political decision making, but also the parliament was reduced to rubberstamp governmental decisions. The incidents led to deep frustration of the initiators of the EC (Seifert 2002:144 und Grabner 1999:271-273). Attempts to introduce a more inclusive deliberation of techno-scientific issues have – although tried a number of times – often failed in Austria. On the other hand, a series of protests have occurred in which the public successfully changed governmental policies. Both of these developments are intertwined in a peculiar way: the

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disregard of broader public deliberation and eruptive public protests breaking through the enclosed circles of policy making. It seems that only if public voices are loud enough, they can draw attention.

7.6 P OLITICAL

CULTURE

What I have tried to demonstrate so far shows a specific political culture which can hardly be called responsive. The non-inclusiveness of the Austrian political culture goes, however, deeper and is embedded into both history and structure of the Austrian political system. This context is crucially important for an understanding of political processes in Austria and it may explain why attempts to learn from other countries (even if they are as similar to Germany) repeatedly face severe difficulties or even fail to succeed. In addition, I argue that political history in its present structure is also the reason why Austrians so often draw a dark picture of their own country. I shall elaborate this argument a little more thoroughly. One important reason why political analysts, social scientists, philosophers, journalists, artists and intellectuals express their critical assessment of Austria so insistently is precisely its non-responsive political culture. As a matter of fact, many of the most renowned Austrian intellectuals have chosen rather provocative means to express themselves. Thomas Bernhard, Elfriede Jelinek, and earlier Robert Musil, Karl Kraus and many others, are well known examples of critical Austrian writers. Furthermore, the well-known Austrian artists Günter Brus, Hermann Nietsch, Otto Mühl, and Rudolf Schwarzkogler of the Viennese Actionists have dealt with dark and even shocking parts of human existence. I shall try to explain why this is so. I want to illustrate my argument with a personal experience. Several years ago, when I did my military substitute service, I was working for the local street-paper. On occasion, I contributed to the magazine with an article. So it happened that my assignment was to interview a well-known Austrian writer. He was the keynote speaker of a charity event on the occasion of which I had a chance to talk to him. During the interview, this writer explained his work to me and drew a connection to the circumstances at the time of his early career. In the 1960s and 70s, he explained, German artists debated endlessly. Whereas our German friends sat down to the table and talked, he continued, we stepped on the table and shit on it. Referring to Viennese Actionism of that time he made clear to me why talking did not seem to be an appropriate means of expression. His explanation was psycho-analytic as he noted. All the dirt was swept under the carpet; it was suppressed and hidden away. All that hidden dirt had to be made visible. Decades of denial called for drastic means of expression, but no longer should it be possible to overlook the dirt and its stink. This explanation switched on a light in my comprehension of contem-

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porary art. Austrian art of the 1960s and 70s is rather violent and very drastic in expression. Without the background explanation I was given, it is really difficult to make sense of its often unbearable provocations. Here is an example of Günter Brus’ performances: “Brus urinated into a glass then proceeded to cover his body in his own excrement, and ended the piece by drinking his own urine. During the performance Brus also sang the Austrian national Anthem while masturbating. Bruce [sic!] ended the piece by vomiting and his arrest. Through this piece and other performance works Brus hoped to reveal the still fascist essence 9

of the nation.” (Brus)

Having lived in Austria for most of my life, I have witnessed the tendency to look away many times. When someone pointed to drawbacks (i.e. to the dirt), the common response is to pretend, it was not there. This raises two questions: “why is that so?” and: “what is the dirt?” To answer these questions, I need to add a little more historical background.

7.7 G LOOMY A USTRIA The dirt my instructive interviewee was referring to, comes from the Austrian involvement in the horrors of the Nazi regime. It took until the 1991 until official Austria had acknowledged its share in the guilt (Mappes-Niediek 2008:104). There is a deeper reason for insistence of the Austrian denial. After WW2, Austria was occupied by the Allies, just as Germany was. But, in Austria this state lasted only 10 years. In 1955, Austria became a sovereign country again and was not divided into two nations as was feared. The reason why this became possible was that Austrian politicians could successfully establish that the country was the “first victim” of Nazi Germany. After the annexation in 1938, Austria was not a sovereign state and did not exist as such according to international law. The mentioned version of history had already been predisposed in the so called “Moscow declaration” of the Allies USA, USSR and Great Britain from 1 November 1943 (Mappes-Niediek 2008:99). The declaration states that Austria should be freed from German rule and become a sovereign country again. After the war, the Allies let Austria get away with the historical lie that it was Hitlers first victim. But, the official version of the story was all too convenient and made it unnecessary to face responsibilities. What was used as an argument for the re-establishment of Austria as a sovereign state in 1955 also served as a template for individual coping strategies. Its logic reads as follows: Austria did not exist, therefore Austrians did not exist and consequently no Austrian was responsible

9

Source: http://wn.com/Günter_Brus; last access 30.9.2011.

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for the deeds of the Nazi regime (Mappes-Niediek 2008:97). Doubtlessly this is a simplification, but a very common one nevertheless. The tragedy was that Austria was able to and did build its very post-war existence on this historical lie. Germany did not have this option. It had no other choice but to face what had happened and deal with history (Mappes-Niediek 2008:97). The result in Germany: debate! The result in Austria: silence! This created a political culture in Austria, which is not willing to listen and consequently is not responsive. There are, however, also other reasons why the Austrian political culture is different from its German counterpart. These reasons are structural. Austria is a federal state (just as Germany is), it has nine provinces. The effective power of the provincial government is to distribute tax money (also and especially on a community level). Different than in Germany, however, the provinces have so called concentration governments (a form of concordance democracy), which means that all parties are included in the provincial government provided that they gain more than approximately 10% of the votes. The political commentator Norbert Mappes-Niediek (2008:51) concludes that for that reason there is no (powerful) opposition in Austria. The power relations never change, even if a party does not represent the majority it will still be in the government (of the province). Even though the circumstances are different in the national parliament, as a matter of fact, Austria had a coalition government for most of the post war era a coalition between the two largest parties, however. Again, this fact leads to circumstances in which political opposition is marginalised and power relations effectively never change (Mappes-Niediek 2008:52). Mappes-Niediek concludes: “Elections do not change anything – this is still the basic biographical experience of each Austrian regardless of his or her age” (Mappes-Niediek 2008:64). Cutting a long story short, Norbert Mappes-Niediek concludes that the described circumstances lead to a situation in which the government does not listen. The fact that power relations never change, makes politics rather non-responsive, since the largest parties share power between the two of them. It is a common Austrian myth that politicians would make their deals regardless of the people they are supposed to represent (Seifert 2002:259). The feeling that remains is often expressed as: “you can say what you want, nobody will listen”. This feeling that nobody will listen provokes responses of a particular kind. I therefore interpret it as a response to a non-responsive political culture as an answer to why Austrian intellectuals often draw very drastic pictures of the country in order to win attention. Artists use quite provocative means of expression to bring out the dirt. However, I do not want to give the impression that criticism of the described situation is only intellectualised and artistic. There are also populist reactions, mostly from right wing groups. Right wing political parties are not part of the traditional power block. One of their key messages is that they are the only group who can challenge the accustomed power-alliance (which would never change without them). Certainly, I do not write this in defence of right wing rhetoric. My purpose is to explain why many Austrians draw such a gloomy picture of their

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own country. So, let me summarize all the mentioned elements in relation to one another and summarize the circumstances in which ELSA arrived as a solution to a particular acceptance problem.

7.8 C ONCLUSION The way in which ELSA research was received, whether, and how it functioned can only be assessed if the socio-political environment in which it operates is taken into account. My analysis allocates ELSA in the larger Austrian historical context and frames it as a science policy measure. ELSA – as a new way to govern the relationship between science and the public – has been introduced to a political culture that traditionally has not been responsive (cf. Mappes-Niediek 2008). Austrian intellectuals have drawn a rather gloomy picture of the political culture in their country and often they have used rather drastic means to express that. Also, the form of articulation is clearly related to an addressee that is thought of as not being willing to listen. Both sides of the coin are related to each other: an enclosed political system and a public sphere that seeks ways of being heard. In a sense, the described situation is a deadlock. Public voices can only draw attention if they are strong enough, but if they reach their audience they are rather viewed as disruptive. I argue that the Austrian ELSA programme is for the most part a reaction to public science-controversies. At the time when the Austrian government prepared a programme to invest large amounts of money into genome research, public protests peaked. Especially concerns regarding biotechnological applications in food and agriculture dominated the media discourse during the late 1990s. Environmental protests had proven their powerful dynamics in the past and memories were still fresh enough to become quite disruptive for governmental policy. Being aware of what was most rejected the government decided to concentrate its efforts on medical research, which was thought to be less controversial than genetic technologies in the area of food and agriculture. But, to play it safe, in that particular moment in time, new ways were sought to deal with public concerns in more constructive ways. The declared goal was to enhance public acceptance of the biosciences in order to avoid the failure of science policy investments (cf. GEN-AU10). It is clear that the integration of the social sciences into genome research programmes according to such framing depends on the threat of a public controversy. As there have not occurred any serious public controversy lately, it is only consequential that support for ELSA programmes assigned with the mentioned acceptance agenda has declined, too. It will be a future

10 Source: http://www.gen-au.at/content_index.jsp?id=21&base=foerdern&lang=de; last access 17.5.2011.

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challenge for social scientists to demonstrate why the social study of the life sciences beyond engineering of acceptance is needed. The ELSA (ELSI) Model has been criticised many times. I therefore restrict my remarks to one crucial point which is important to the topic at hand. Sabine Maasen and Oliver Lieven concluded in their paper on transdisciplinary research that such new forms of research could be interpreted as means of a neo-liberal governance model (cf. Maasen & Lieven 2006:407). Along these lines, the introduction of ELSA can be seen as a means to make bioscience more reflexive and thereby enhance selfregulation. The state can withdraw from direct intervention and leave the field to the free play of reflexive forces. My point is that, in this model, the state does not need to be responsive. The integration of ELSA aims to make science itself responsive. Researchers need to give account of their work, explain possible risks and how to deal with them, outline expected benefits and how to accomplish them. In short, scientists need to justify why they think they deserve public funding for what they do. The crux of this arrangement is to delegate the task to justify science policy investments to those who receive it. This may be an effective governance approach, but it does not necessarily make science policy more responsive. In order to shed more light on how such new forms of research function in a particular context, I draw on Sheila Jasanoffs comparative study of political cultures (Jasanoff 2005). This allows me to address the wider circumstances in which the reflection of current socio-technical developments takes place. Jasanoff’s main point is that the forms of political decision making vary across different countries and also the ways in which such decisions are collectively deliberated. It follows from her argument that methods of public deliberation cannot simply be imported from other countries. They may work very well in the political culture in which they were initially developed. But, this is no guaranty that these methods function in other context just as well. As a matter of fact, attempts to initiate more inclusive deliberation of bioscience have received rather critical evaluation (Felt, Fochler et al. 2003b and Bogner et al 2004). It was found that these attempts were not linked to policy making and only received very little (or no) media attention. In comparison to the USA and Britain, Jasanoff has found the German political culture to be the least transparent (Jasanoff 2005:269). There are considerable doubts that the Austrian political culture meets the German standards. Trying to learn from other countries turned out not to be an easy task. Even the attempt to broaden parliamentarian deliberation using the German style Enquete-Commission has received harsh dismissal by the Austrian government at the time. Against this backdrop, it still remains a long way to go in order to create a more responsive and accountable political culture in Austria.

8 Public accountability of newborn screening1

In the previous chapter, I have outlined the socio-political context in which ELSA research has emerged in Austria. The presented arguments allow me to interpret ELSA as a response to techno-scientific controversies of the 1970s, 80s and 90s. Several attempts had been made to experiment with different forms of public deliberation and public participation which underlines governmental search for more constructive ways of dealing with public scepticism towards the new biosciences. In the next chapter I will focus on concrete accountability practices using the example of newborn screening. I have chosen this area for as an example since I can draw on a project I carried out between 2006 and 2009. The following section was published as a paper in „Social Science and Medicine“. I reprint it here without changes.

8.1 I NTRODUCTION Due to the advancements of tandem mass spectrometry (MS/MS), newborn screening (NBS) is currently one of the most dynamic fields in clinically applied testing for genetic disorders. A number of European countries have introduced MS/MS, expanding their screening programme considerably. Some countries have, however, taken a rather reluctant approach and have not expanded their programme substantially. Given the heterogeneity of newborn screening programmes in Europe, the political decision-making processes behind a possible introduction or expansion of a screening programme come to the fore. A comparison between the UK and Austria can make a 1

Reprinted from “Social Science & Medicine”, Vol. 70 (2010), Bernhard Wieser, Public accountability of newborn screening: Collective knowing and deciding”, pp. 926-933, Copyright 2010 with permission from Elsevier. (License Number: 3944180363234). The paper is based on a research project funded by the Austrian Genome Research Programme (GENAU). I would like to thank Ruth Chadwick and the colleagues from Cesagen in Cardiff for their support during the research for this paper. In particular I am grateful for helpful comments from Angus Clarke, Neil Stephens, Amy Lloyd and David Mercer.

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novel contribution to the analysis of newborn screening governance, since they represent two ends of the European spectrum and pursue quite different approaches. National differences between European countries are to be found not only with respect to the design of the programmes and how comprehensive they are, but also to the ways in which screening programmes are explained and justified to the public. The major aim of this paper is to explain the differences observed against the backdrop of the specific way in which the chosen countries strive to obtain public acceptance for their policies. The medical literature on newborn screening puts a strong emphasis on medical criteria as initially formulated by James Wilson and Gunner Jungner (1968) (see Table 3) and how they should be interpreted in the context of newborn screening. In addition, economic studies are carried out and published to provide evidence for the assessment of newborn screening programmes. By contrast, there is not much said about public acceptability – the 6th Wilson and Jungner criterion – and what can be done to achieve this goal. Table 3: Classical screening criteria by Wilson and Jungner (1968:26-27). 1. 2. 3. 4. 5. 6. 7.

The condition sought should be an important health problem. There should be an accepted treatment for patients with recognized disease. Facilities for diagnosis and treatment should be available. There should be a recognizable latent or early symptomatic stage. There should be a suitable test or examination. The test should be acceptable to the population. The natural history of the condition, including development from latent to declared disease, should be adequately understood. 8. There should be an agreed policy on whom to treat as patients. 9. The cost of case-finding (including diagnosis and treatment of patients diagnosed) should be economically balanced in relation to possible expenditure on medical care as a whole. 10. Case-finding should be a continuing process and not a “once and for all” project. Going through the medical literature, I provide a short historical overview and recall the classical screening criteria of Wilson and Jungner. Focussing on the decisionmaking processes behind the design and expansion of newborn screening, I address the issue of informed consent and accountability. After introducing Sheila Jasanoff’s concept of “civic epistemology” (Jasanoff 2005), I contrast how Britain and Austria publicly account for their respective policies regarding newborn screening. After comparing publicly available material, detailed evidence can be provided to demon-

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strate differences of national accountability practices. Discussing the observed differences, I argue that the implementation of actual accountability practices is a rather contingent matter. The Austrian case, in particular, shows that governments do not always make use of available national accountability repertoires and nor do they always succeed in their efforts. In this way, I aim to offer an addition to Jasanoff’s concept by analysing the variability and contingency of the practices that shape healthcare policies and medical care.

8.2 B ACKGROUND Newborn screening aims to identify a selected amount of genetically caused diseases. Most of these diseases are recessive, which means that for such a disease to become manifest, both parents must pass on a mutated gene to their child. Although they can pass on a mutated gene, the parents do not usually show symptoms themselves. For that reason, there has usually not been any previous occurrence of the disease in the family and the disease occurs unexpectedly. The main reason for including a disease in a screening programme is to enhance the efficacy of medical treatment. If early diagnosis has a positive influence in this regard, screening is seen to be advisable, since there is a clear benefit for the child. The history of newborn screening already began some decades ago. After some small, locally organized programmes for phenylketonuria (PKU) in the UK, comprehensive newborn screening was widely promoted by Robert Guthrie, who developed a feasible way to detect PKU using a bacterial inhibition assay for phenylalanine (Guthrie & Susi 1963; see also Dhondt 2007:418, Downing & Pollitt 2008:11). Newborn screening was introduced in many Western countries in the following years. Later in the 1960s, the discussion began to address the conditions under which neonatal screening could be considered to be medically appropriate and socially desirable. On behalf of the World Health Organisation (WHO), Wilson and Jungner (1968) developed a general framework for screening programmes. These WHO guidelines have been, and still are, widely accepted as guiding principles. Despite the general consensus on the Wilson and Jungner principles, there are great differences when these principles are actually implement as criteria for actual screening programmes. Recent technological innovations have changed the newborn screening landscape significantly. In particular, tandem mass spectrometry (MS/MS) – developed by Dave Millington and his group in the early 1990s – offers a wide spectrum of diagnostic possibilities in a single analytical run (Pollitt 2006:390). The potential of this technology is enormous and has paved the way for expanded newborn screening. Not only does it allow screening newborns for more than thirty well-defined genetic disorders, the analyses can also be performed simultaneously. This may suggest that expanded screening can be seen as a single decision. Furthermore, once MS/MS is

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introduced, including more conditions to the programme adds only minimal extra cost. A number of European countries have implemented population-wide expanded newborn screening using MS/MS technology (Bodamer, Hoffmann et al. 2007:440). Germany expanded its programme in December 2004, but decided to limit screening with MS/MS to eight conditions (Hess 2005:§5). The Netherlands added 14 conditions in 2007, and Austria screens for 20 disorders using MS/MS (Bodamer, Hoffmann et al. 2007:442). Other countries with expanded newborn screening programmes are Belgium, Denmark, Poland, Portugal, and Spain. A more detailed overview on the expansion of neonatal screening in Europe can be found in a publication by Loeber (2007). The UK and other countries (e.g. Switzerland) are, however, cautious in expanding their programmes (Loeber 2007:432). In 2006, a large-scale pilot study on newborn screening for medium-chain acyl-CoA dehydrogenase deficiency (MCADD) was completed in Britain. A nationwide newborn screening for MCADD using MS/MS was introduced in February 2009 (http://newbornbloodspot.screening.nhs.uk/mcadd). It is, however, remarkable that Wales runs a pilot study for the voluntary screening of Duchenne muscular dystrophy (DMD), for which no effective treatment is available (Parsons, Clarke et al. 2002:2002). This approach questions the classical screening criteria and regards screening as being justifiable even if treatment is not available, but where parents see a benefit in early diagnosis and earlier psychological adjustment. It is argued that avoiding delays in clinical diagnosis remains a major problem in many areas and the possibility of reproductive choices is also presented as a potential advantage for affected couples (Pollitt, Green et al. 1997:1). Having observed the obvious diversity among the newborn screening programmes in Europe, Bodamer et al. note that each programme claims to be based on the screening principles developed by Wilson and Jungner. Hence, Bodamer et al. state: “The rationale behind inclusion or exclusion of a respective disorder is far from clear in most cases” (Bodamer, Hoffmann et al. 2007: 443). They suggest that the observed differences cannot be explained by differences in prevalence in populations, but only by different approaches to the estimation of risks and benefits. Likewise, Pollitt notes that the cost, availability and effectiveness of treatment cannot explain the differences between current national screening programmes. According to Pollitt, a generally accepted way of using the Wilson and Jungner principles as an “objective decision tool” is not in view (Pollitt 2006:390). But what then are the disputed issues? Most inborn metabolic errors are quite rare. This is particularly true of the diseases that are identified using MS/MS. Whether or not screening for such a disease is “an important health problem” (see Wilson and Jungner criteria, Table 3) is, therefore, open to interpretation. The rarity of these conditions is also important because the very small number of cases means that empirical evidence for the clinical benefits of early screening is difficult to obtain

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and as yet still lacking in many cases. Another controversial issue is whether screening is beneficial because it provides information that allows for better-informed reproductive choices for subsequent pregnancies. It is not least for these reasons that the expansion of newborn screening has become involved in a discussion of precisely which disorders should be screened for and what criteria should be applied for the choice.

8.3 A SSESSING

NEWBORN SCREENING

In light of the national differences between screening programmes in Europe, it becomes clear not only that screening can be organized in different ways, but also that screening is subject to different decision-making processes. Rodney Polliott, a British expert on newborn screening, comments on the observed differences between USA, Germany and the UK: “By contrast, high-level policies in different countries show a disturbing lack of agreement. Differences in the way screening is funded and the professional affiliations of those involved in policy making influenced the outcomes. However, the underlying problem is a lack of appropriate decision tools and a degree of misunderstanding of the nature of MS–MS screening” (Pollitt 2006:394)

In spite of the hope for technocratic solutions as expressed in the previous quotation, the design of healthcare systems does not strictly follow from scientific evidence, and is instead the result of social and political action. Although the Wilson and Jungner principles provide a common ground for screening, they need to be interpreted when applied. Medical experts like Pollitt find it hard to do so since these principles are phrased in qualitative terms, which for him means “subjectively” (Pollitt 2007:425). Although economic cost-benefit analyses seem more “objective” from Pollitt’s point of view, he also admits that the matter is an obstacle to formal economic analysis, since robust evidence is largely lacking (Pollitt 2007:425). Besides “economically balanced case-finding [the act of locating individuals with a disease] in relation to possible expenditure on medical care as a whole”, Wilson and Jungner call for appropriate organisational requirements of screening programmes. The majority of their screening criteria, however, focus on essentially medical aspects (see Table 3). Although these medical criteria are far from being unproblematic and are contested among medical scientists themselves, in this paper I mainly address the 6th of the Wilson and Jungner criteria, which raises wider social and ethical aspects of screening. It suggests that “the test should be acceptable to the population” (Wilson & Jungner 1968:31–32).

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Taking this criterion seriously, it is necessary to clarify possible issues which can cause deprecation or contribute to acceptance. First of all, it needs to be considered that health policy is not just an issue for decision makers, politicians, and medical experts, but also for the general public, who are on the receiving end of medical practices in everyday life. Dhondt notices an increasing tendency to include legal, ethical and “consumerist” considerations and to inform parents about their choices (Dhondt 2007:420). Dhondt’s reference to ethical, legal, and “consumerist” dimensions of screening implies that the experiences and opinions of the tested families cannot be ignored. Instead, these dimensions are crucial for the public acceptability of screening programmes. A second dimension of acceptance concerns the very process of decision making. How can decisions be taken in such a way that a screening programme can on the whole expect public acceptance? The common view suggests that genetic medicine is acceptable if individuals can decide for themselves whether or not they want to be tested and treated (Wertz & Fletcher 2004). Bearing in mind, however, that in many countries newborn screening is performed routinely without the explicit informed consent of the parents, “decision autonomy” effectively does not function as a suitable procedural basis to secure the public acceptability of such screening programmes in these countries. Although newborn screening is not strictly mandatory in Austria, in practice opting out remains a rather theoretical option. The applied principle is called “informed dissent”, meaning that parents can only opt out after they have been informed about the potential implications for the child if a disorder that could be screened for remains undetected. In most cases newborns are routinely tested without explaining these implications to the parents. The UK applies informed consent, although it has been found that the procedure is deficient in practice (Parsons, King et al. 2007). To be clear, the point is not that decision autonomy is needless, rather that it is not enough as currently carried out. There is another fundamental problem beyond questions of decision autonomy and this is what this paper is mainly concerned with: the decision-making processes concerning the concrete form of screening programmes. The introduction, design and possible expansion of (newborn) screening programmes are essentially collective decisions. These decisions are not subject to individual choice, but they are decided on by political actors for the society as a whole. Having one’s own child screened or not is a decision parents can indeed make for themselves (if given the opportunity to do so). But whether informed consent must be obtained or whether it should be possible to opt out are obviously political decisions. And these collective decisions structure the way in which individual decisions are prompted and can be made. Consequently, the issue is how these collective decisions that are at stake attain public acceptance. The most elementary precondition for allowing the public to reflect on acceptance is that the public knows at least something about these issues.

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From this perspective, the efforts made in order to inform the public about the introduction, design and possible expansion of newborn screening are crucially important. The principle in question is public accountability for collective decisions. Accountable policy making is even more important when informed consent is not applied and, therefore, parents usually do not learn much about the implications of newborn screening during medical routine.

8.4 C IVIC

EPISTEMOLOGY AND PUBLIC ACCOUNTABILITY

In the remaining part of this paper, I compare what the UK and Austria do in order to make their newborn screening programmes accountable (Table 4). For this purpose, I draw on Sheila Jasanoff’s work on “civic epistemology”. In her own words Jasanoff (2005) defines: “Civic epistemology refers to the institutionalized practices by which members of a given society test and deploy knowledge claims used as a basis for making collective choices” (Jasanoff 2005:255). For Jasanoff, a credible knowledge basis is critical if political decision making is to be legitimatised. The point is that the ways in which knowledge claims gain credibility, and even more so how they are used to substantiate policies, vary greatly from one country to another. The specific practices of assessing the basis of political decisions constitute what Jasanoff calls a “political culture” (Jasanoff 2005:249). Two things are important: (1) the integration of scientific expertise and (2) the assessment must be performed in public arenas (Jasanoff 2005:258). Jasanoff explains: “Public reasoning, then, achieves its standing by meeting entrenched cultural expectations about how knowledge should be made authoritative. Science no less than politics, must conform to these established ways of public knowing in order to gain broad-based support—especially when science helps underwrite significant collective choices.” (Jasanoff 2005:249)

I will use Jasanoff’s proposal to discuss how Austria and the UK present their newborn screening programmes. However, unlike Jasanoff’s endeavour, my own analysis does not primarily focus on the “collective ways of knowing” but – slightly differently – on the “accountability practices” performed in order to explain and justify specific screening programmes to the public. Hence, I ask how all the practices to create and perform civic epistemologies are used to account publicly for collective decisions. This shift of focus is important, because it allows me to emphasise the degree to which the knowledge basis that is created and deployed for collective decisions is accessible to the public. Whereas the UK pursues an accountability model that is grounded in the direct display of firsthand scientific evidence, Austria ostensibly refers to law-making and expert committees that are officially entitled to advice regulation.

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Table 4: Explaining newborn screening to the public UK Scientific evidence, guidelines, reports, policy documents, specific website for NBS

Austria The law and the legislative process (parliamentary materials, reports, lab standards; but nothing on NBS)

Advisory committees

Specifically for NBS, providing sound evidence and making them publicly available and accessible

Medical board advising the government, but no reports available and accessible (other committees on gene technology have not yet dealt with NBS)

Shared knowledge basis for collective decisions

72 reports on NBS, plus 25 on non-screened conditions, 3 specific HTA reports on clinical and cost effectiveness of MS/MS

47 reports on agricultural biotechnology, 3 on genetic medicine, none dealing with NBS

Knowledge basis for individual decisions

Informed consent

Informed dissent

Public involvement

Addressees of reporting, consulting parents’ and health professionals’ views

Deliberative experiments (not dealing with NBS) disregarded or results not displayed

What is displayed

However, Austria does not perform its deliberation on screening policies in a publicly accessible space, as becomes clear when drawing on Jasanoff’s analytical framework (indicated by italics). In the UK knowledge-making supplying the design of newborn screening is seen as a public service. In Austria, it is the task of governmentally appointed institutions. There are no public demonstrations, nor is the objectivity of the underlying knowledge tested in public. The experts involved are not known to the public and they do not speak or report (directly) to the public. The decisions made are not publicly justified. In essence, the process behind newborn screening is for the most part invisible and, therefore, not available to public assessment of a collectively shared knowledge basis. The UK in comparison makes a very substantial effort to account publicly for the way in which its own screening programme is designed. This

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is done mainly by the extensive display of scientific facts produced by empirical studies. The focus on experts in the process of shaping the Austrian newborn screening programme is rather high and in actual fact it focuses almost exclusively on medical expertise. However, the credibility of the institutions or individuals on the committee advising the government is not publicly demonstrated. No effort is made to establish such trustworthiness to the public. It is enough that the government acknowledges the credibility of the consulted experts. Using Jasanoff’s terminology, the participatory style of knowledge-making in the UK is grounded in trustworthy bodies. In the case of screening these are newly founded institutions. Austria, however, traditionally follows the German way where participation is sought during the law-making process. This approach was pursued throughout the course of the design of the Austrian Gene Technology Act (GTG) of 1994 and its amendment in 2004.Following the German example, a parliamentary inquiry was held in Austria to acquaint legislators with knowledge from medicine and other domains (for detailed analysis see Grabner 1999:229–268; Seifert 2002:141–144). However, despite the Austrian emphasis on the law-making process, I shall argue that there are considerable inconsistencies in applying this strategy to newborn screening. Whereas Austrian law regulates predictive testing, it does not deal with newborn screening. Consequently, the law is not used as a publicly visible legitimatory basis for newborn screening although it is for other forms of genetic medicine and biotechnology. In the UK, there is a stronger focus on self-regulation and hence law-making is not the primary regulatory mode of genetic testing and thus it is absent in the country’s accountability practice. However, the British situation is different to the Austrian in the sense that the basis for the screening programme is displayed and transparent to an extensive degree. There is a clear difference in the accessibility of the way in which the public can consult the (knowledge) basis on which newborn screening is designed, as I shall demonstrate with empirical material in the next section. The presented argument is twofold. The Austrian practice of accountability regarding genetic medicine stands in the tradition of German “civic epistemology”. However, in the case of newborn screening, Austrian accountability is not only different from that in the UK, but also fails to meet its own standards in making newborn screening (and its expansion) publicly more accountable. The observed inconsistencies and sometimes even contradictory accountability practices reveal civic epistemologies to be a more contingent matter than Jasanoff’s analysis suggests.

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8.5 T HE

ACCOUNTABILITY OF NEWBORN SCREENING

A comparison of the UK and Austria allows me to analyse the efforts made by the governments of these countries to inform the public about their national screening policies. I regard such concrete accountability practices as a fundamental precondition for the possibility that members of a given society can make up their minds whether or not they find a screening programme and its expansion acceptable. 8.5.1 United Kingdom National Screening Committee In Britain the government has set up a “National Screening Committee” (NSC) which runs a website providing comprehensive information on the subject. The NSC states explicitly that it will inform its advice and recommendations by sound evidence. In order to do so the NSC draws on appropriate sources and also defines research needs for screening. In particular it consults the Health Technology Assessment Programme’s Diagnostic Technologies and Screening Panel (http://www.screening.nhs.uk/about). Furthermore the NSC provides access to a number of reports and policy documents on its website. Along with many other screening programmes, newborn screening is also represented on the NSC website. For the latter the NHS runs an independent “UK Newborn Screening Programme Centre” website. UK Newborn Screening Programme Centre On the UK Newborn Screening Programme Centre website there is extensive information on various aspects regarding newborn screening, including leaflets and brochures for download as well as scientific reports and policy documents in pdf-format. The information provided addresses the public at large and families with newborns, health workers, as well as medical specialists and policy makers. Established in 2002, the UK Newborn Screening Programme Centre aims to ensure the quality of the current screening infrastructure and to allow for the introduction of new screening programmes. There is an emphasis on the collaboration between parents, health professionals and laboratory directors. These efforts are reflected in empirical research aimed at the improvement of the relationship between parents and the medical staff (e.g. Hargreaves, Sinclair et al. 2007). The UK Newborn Screening Programme Centre states: “Developing standards for information and communication has been a key part of this work, led by the centre’s parent support research team. This work reflects wider trends in the NHS which emphasise the importance of ensuring that patients, and parents of young patients, have information and are given the opportunity to make informed choices about what they want for

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themselves or their baby.” (http://newbornbloodspot.screening.nhs.uk/programmecertre#fileid 10602)

The website explains why newborn screening is desirable and the benefits for affected newborns if their condition is detected early. Information is given on how the screening is performed. There is a detailed account of the centre itself and its members as well as of the UK screening standards (both medical and policy related), of its current activities, and of the collection of data on the current performance of the screening facilities in the UK. Reports on various aspects of the UK newborn screening programme are available online and can be downloaded in pdf-format. The information goes into great depth and comprises several hundred pages of documents. Since the policies and standards for the healthcare professionals and the ongoing amendment thereof are made accessible online, this process is also transparent to the parents of the screened children. Parents can read the standard to which the actual test should be taken and processed. In these guidelines it is explicitly stated that written information should be given to the parents and consent for the test should be sought (http://newbornbloodspot.screening.nhs.uk/getdata.php?id= 10940). Special expert groups have been set up in order to develop guidelines for the consent procedure. Equally, the information provided has been subject to deliberation by an expert group which gave guidance on the detailed wording for a leaflet on newborn screening. The leaflet is available in 19 languages (http://www.screening.nhs.uk/getdata.php?id=9240). NHS online library In addition to the aforementioned online resources more information is available at http:// www.library.nhs.uk/ SCREENING/SearchResults.aspx?tbID=288&catID=82 05. This is a website that provides all sorts of reports on health issues and is run by the NHS. The collection comprises as many as 221 documents dealing with NBS of which 96 provide scientific evidence. Clinical and cost-effectiveness evaluations, health economy studies and annual monitoring of the screening programme are reported, with studies on other issues such as the disclosure of carrier status, the introduction of MS/MS, policy recommendations, guidelines and screening standards also being made available. An additional 25 documents are present on NBS programmes that are not routinely offered in the UK. In this section reports can be found which serve as a basis for policy decisions against the introduction of new or the expansion of existing screening programmes. Documents on pilot studies can also be found here (e.g. studies on screening for Duchenne Muscular Dystrophy). Health Technology Assessment reports on newborn screening There are three Health Technology Assessment (HTA) reports on newborn screening: Seymour, Thomason et al. 1997, Pollitt, Green et al. 1997, and Pandor, Eastham et

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al. 2004, which have assessed the clinical effectiveness and cost-effectiveness of neonatal screening for inborn metabolic errors using MS/MS. They can be regarded as very influential for the UK policy regarding newborn screening. The main goal of the HTA programme is to produce independent research “about the effectiveness, costs and broader impact of healthcare treatments and tests for those who plan, provide or receive care in the NHS” (http://www.ncchta.org/index.shtml). In this way, the HTA programme is a service supplied by the NHS and provides expert groups, commissions and policy makers with scientific expertise. The research conducted by the HTA has been decisive for the development of screening services in the UK. In fact, the NSC website states that the work of the HTA programme provides the single most important and largest influence on its work (http://www.ncchta.org/about/customers/NSC.shtml). 8.5.2 Austria The Austrian Federal Ministry for Health runs a website providing information on genetic engineering and explains its position on this matter (http://www.bmgfj. gv.at/cms/site/thema.html?channel=CH0697). The explicitly declared aim of this website is the continuous development of the law and, to this end; it provides information on the GTG and its amendment. The information given on this platform has a strong emphasis on “green” biotechnology, which reflects the Austrian controversy over genetic engineering in the late 1990s (Seifert 2002). However, the GTG also includes regulations concerning medical applications, with particular attention paid to genetic analysis. The information provided on genetic medicine deals mainly with predictive testing. Other forms of genetic analysis are, however, neglected. More details are available regarding the requirements for medical facilities offering predictive testing. Laboratories which intend to offer predictive testing need to apply for inclusion in a national registry (BGBl. 2005:§79). Scientific reports In all the 86 scientific reports dealing with all kinds of health issues available at this health ministry’s website, four dealt with genetic medicine, addressing legal regulations regarding data protection, health policy developments attributable to the “Human Genome Project”, and medical aspects of genetic diagnostics and somatic gene transfer (http://www.bmgfj.gv.at/cms/site/bestellservice.html?channel=CH0521). Forty-seven reports deal with agricultural biotechnology, but no explicit study on newborn screening has been listed on the governmental website. Legal information As with the general information provided, the subject of legal regulations also focuses on biotechnology in food and agriculture. The Austrian Gene Technology Act is

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available online on the governmental website (http://www.bmgfj.gv.at/). The law is presented in its original 1994 version and all its subsequent amendments. There is also a “Gentechnology-Book”, which provides further and more detailed information on the law. The book is also available online on the governmental website and continuously updated. Neither the law nor the book mentions newborn screening in explicit terms. Thus the precise legal situation is somewhat unclear. The generally accepted understanding is that newborn screening does not fall under the definition of genetic testing according to Austrian law. This consequently means that in contrast to predictive testing and prenatal testing there is no explicit legal regulation for newborn screening. Parliament Another source of information is the Austrian Parliament, which provides extensive documentation of the parliamentary debates and the materials used for them on its website. During the parliamentary session dealing with the amendment of the GTG on 17th June 2004 (Nationalrat XXII:67 2004) there was an extensive discussion on a biotechnology moratorium regarding food and agricultural applications. The diagnosis of genetic diseases was, however, not debated at all. In all the parliamentary materials (including the shorthand minutes; a comprehensive computer-assisted search has been carried out), the word “screening” was used exclusively in the context of the possible introduction of pre-implantation diagnosis. Newborn screening has not been mentioned at all. Following the German example, a parliamentary Inquiry Commission [“EnqueteKommission”] was set up as early as 1991, its task being to assess the proposed GTG and to produce recommendations for its final design (Grabner 2000:178; Seifert 2002:140–41). The commission of inquiry was intended to broaden the debate and invite experts from industry, academia and other domains to participate in the deliberation. However, the federal minister for health at the time, Michael Ausserwinkler, announced his proposal for the GTG on the day before the presentation of the Inquiry Commission’s proposal (Seifert 2002:144). In this way, the government blatantly disregarded the work of the Inquiry Commission. This is remarkable, because it shattered the legitimatory potential of the parliamentary process. The Commission’s report was not used as a way of establishing a collectively shared (knowledge) basis for making decisions on matters of biotechnology. Advisory committees The Austrian GTG requires the establishment of an advisory commission to the government under the name “Gentechnikkommission”. The law defines the background of the members, the aim of the Commission, the way it is supposed to operate and, in §93, regulates the duty to report in written form once a year. Specific working groups

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on defined issues such as “genetic analysis and gene-therapy on humans” need to report every three years (§93/3 and §99/5). It is interesting to note that the compulsory reports address parliament and not the general public. On the official website of the Federal Ministry for Health, Family and Youth dealing with matters of biotechnology only the third from 2005 and fourth from 2008 of these reports was made accessible online, with no archive of previous reports or materials. The third report, a 33-page document, contains two and a half pages on medical applications. Regarding newborn screening, the discussion turned on how to provide medical information subsequent to the routine screening examinations. The view was expressed that thorough counselling for the families concerned was required prior to the validation of the screening results. The production of written material was encouraged. A brief account of other activities of the Austrian Gene Technology Commission [“Gentechnikkommission”] is provided as well as information not related to newborn screening. The fourth report, delivered to the parliament on 16th October 2008 did not deal with newborn screening at all. The Austrian “Gentechnikkommission” does not give any further account of its activities in a manner accessible to the public. Only a list of the members of the commission is displayed online (http://www.bmgfj.gv.at/cms/site/standard.html?channel=CH0813&doc=CMS1225981709842). Even less information is vailable from the Superior Sanitary Board [“Oberster Santitätsrat”] which advises the government regarding newborn screening. There is, however, an additional commission – the so called “Bioethikkommission” – whose task is to advise the Federal Chancellor [“Bundeskanzler”] on ethical issues. Some brief information is provided by the Federal Chancellery [“Bundeskanzleramt”] (http://www.bundeskanzleramt.at/site/3456/Default.aspx). The task of the Commission is to advise the prime minister on social, scientific and legal issues arising from an ethical point of view in the field of human medicine and human biology. So far the Commission has not addressed newborn screening. Instead, it has mainly focused on stem cell research, pre-implantation genetic diagnosis (which is still not legal in Austria) and other reproductive issues, as well as bio-banks. Public engagement In addition to government efforts to publicise the law as a (legitimatory) basis for genetic testing, there are also forms of public engagement which strive to stimulate public debates and thus to contribute to a collective knowledge basis regarding genetic medicine. In 2003 a citizen’s conference – the “Bürger-Innenkonferenz” – was held and dealt with “genetic data”. Although the panel produced a final statement, it did not find wider dissemination. The government did not take the initiative to publicise this event and its results on its websites where biotechnology-related issues are dealt with prominently. Due to poor media response and a lack of recognition in the political sphere, an evaluation report found this event to be unsatisfactory (Bogner

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2004:v, Seifert 2006: 83). Certainly the “BürgerInnenkonferenz” did not contribute to a publicly accessible and broadly shared understanding of newborn screening. Genetic testing was the theme of a second public event in October 2002 – the “Diskurstag Gendiagnostik”. Like the “BürgerInnenkonferenz”, the event was criticised for not evoking “sufficient” media response and for being detached from policy making (Felt, Fochler et al. 2003b). Apart from the fact that once again there was no debate on newborn screening in this context, the results of the event have not been made available or displayed online. Documentation can only be found on the evaluators’ website (http://epub.oeaw.ac.at/0xc1aa500d_0x0010b250.pdf; http://www. univie.ac.at/virusss/documents/227195477.pdf). No use was made of the results of these events by governmental institutions to establish accountability for their policy decisions.

8.6 D ISCUSSION In order to fully appreciate the differences outlined between national accountability practices, it is important to take into consideration the ethical grounding for a given medical action. Individual choice is generally seen as the ethical backbone of genetic medicine (ESHG 2003: 904; Wertz & Fletcher 2004:19–35). The UK makes a great effort indeed to allow parents to make decisions concerning newborn screening for their infants. Evidently, it is a necessary precondition of informed choices that those who are meant to decide can actually know about the matters which are to be decided on. The provision of information and its accessibility is vital in this context. Certainly, the consent practice is far from being unproblematic. Newborn screening in particular provides an exemplary case that reveals the limitations of informed consent under the given time constraints, the circumstances in which the information is given and the professional training of those who are supposed to answer parents’ questions. Parsons, King et al. 2007 argue that the actual consent practice is rather poor. Mothers cannot differentiate between different conditions and perceive NBS as a consistent package. This raises fundamental issues for any possible consent practice in the context of newborn screening. Acknowledging the limitations of practice, it is still important to acknowledge that decision autonomy constitutes a distinctive feature and serves as a decisive legitimately grounding for NBS in Britain. In Austria, quite differently, the guiding principle for newborn screening is not primarily the safeguarding of decision autonomy. The guiding vision instead addresses the medical ethos of the care for the wellbeing of the newborn child (Beauchamp & Childress 1994; Mallia & Have 2003) because it is for the benefit of the child that the tests in question are carried out. Early diagnosis can significantly contribute to a higher life expectancy and also to a better quality of life. From this point of view, it is imperative to determine what precisely should be tested. It coincides

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with this priority that medical experts are required to answer this question and not to leave the decision merely to the “lay understanding” of the parents. As a matter of fact, parents are not explicitly asked for their informed consent during routine newborn screening in Austria (Stöckler-Ipsiroglu, Bodamer et al. 2000). The wellbeing of the child is committed to the judgement of medical experts. Certainly, it can be seen as a feature of democratic societies that any collective decision is explained and accounted for and that consequently any decision about healthcare aiming at promoting the wellbeing of the population will be explained and accounted for. But despite this grounding in a democratic ethos, concrete action cannot be taken for granted. The reason for implementing actual accountability practices is rather to be found in tangible incidents which trigger actual measures. In Austria, it was clearly the controversy on genetically modified (GM) food that set the priorities for the biotech-related policy making of the past decade (Seifert 2002). The government’s effort in explaining its position and providing a common knowledge basis is strikingly more comprehensive for new food and crop biotechnologies than it is for medical applications. This corresponds with the hotly debated biotech controversy of the late 1990s. In conclusion, the Austrian accountability practice is controversydriven. Medical issues have been understood as the broadly accepted side of biotechnology, and have been included as a counterbalance to controversially received agricultural applications (Nationalrat XXII:67 2004:71–74). Newborn screening is, however, not even addressed in political and regulatory debates about genetic testing. Even though GM food was also an issue of public debate in Britain, newborn screening can be directly related to the critical results of an audit report (Streetly & Corbett 1998). The assessment of the structure and performance of newborn screening in the UK revealed a dispersed, incomplete and generally chaotic local practice (Downing & Pollitt 2008:16). Actions to clarify national policy and establish a formal quality assurance scheme were recommended, and as a result, the UK Newborn Screening Programme Centre was established and published its first set of policies, standards and guidelines in April 2005 (http://www.newbornscreening-bloodspot.org.uk/). Not only were quality measures put into place, the policy process also became much more transparent, since the evidence on which the decisions are based is accessible through the internet. Taken together, these circumstances demonstrate that there are quite different environments within which civic epistemologies and accountability practices regarding newborn screening have developed in these two countries.

8.7 C ONCLUSION In both of the countries considered here, the discussion about the expansion of newborn screening has for the most part been focused on medical and economic cost-

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benefit perspectives. What is less often addressed are social aspects and wider implications such as discrimination, privacy, data security and more general concerns of the public. Within Europe there are significant differences between countries in the number of conditions for which infants are screened. This paper does not intend to argue in favour of either a restricted or a more comprehensive approach. It rather addresses the policy process surrounding the current situation in two selected countries. Austria and the UK were found to deploy quite different approaches in their newborn screening policies. Not only does Austria operate a rather extensive programme and Britain does not, differences were also found with regard to the accountability of the decision-making processes. The information available on newborn screening provided by the NSC and the UK Newborn Screening Programme Centre is overwhelming compared to Austria, where hardly anything is accessible publicly. Although some recent pioneering efforts to change the situation in Austria need to be acknowledged, it is quite evident that the UK and Austria pursue different approaches to the political decision on and the public justification of the design and expansion of their respective newborn screening programmes. Another difference between the UK and Austria is the role of informed consent in the context of newborn screening. Decision autonomy is doubtlessly a desirable goal in genetic medicine. The UK has recently made an effort to better integrate parents’ consent to newborn screening. However, informed consent cannot be regarded as a tool that can solve all issues in genetic testing and screening, especially if the limitations of the actual consent practices during the visit of the midwife who (in the UK) collects the test sample are acknowledged. Furthermore the problem of scale needs to be addressed. Bearing in mind that a number of European countries recently expanded their screening programme to 20 and more conditions, it is evident that thorough information on all the different conditions is difficult to provide given the time constraints and the cost of the counselling. Accordingly, there is a need for complementary ways of providing “information”, i.e., a suitable knowledge basis for newborn screening. Along these lines, public accountability is a principle operating on two levels. Firstly, it aids parents’ informed choices (with additional forms of communication), and secondly, it aims at collective decision. It was argued that it is a core function of the accountability practices described to promote acceptance for collective decisions such as the design and (possible) expansion of a given newborn screening programme. However, the ways in which different countries actually attempt to achieve this goal vary considerably. Accountability practices in the UK rest upon the display of scientific facts. New institutions have been founded to collect, initiate and carry out empirical studies regarding newborn screening to establish a solid knowledge basis. The results of this effort are presented to the public and made available online. Unlike

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Britain, where genetic testing is essentially subject to medical self-regulation, Austria has introduced a law. However, the GTG functions not only as a regulatory instrument, but also the law and the visibility of the law-making process serve as central reference points of the Austrian accountability practice. Although the practices deployed to make policy decisions accountable were found to be rooted in nationally traditional forms of policy making it must be noted that whether or not these repertoires indeed become realised is a more contingent matter. The particular applications of the new genetics that are publicly explained and justified depend, therefore, on circumstantial factors. Whereas the screening policy in the UK was triggered by the results of a critical audit report, in Austria legislation regarding genetic technologies has instead been driven by controversies during the last decade. This may also explain why law-making and related accountability practices have focussed on biotech and predictive testing but have left newborn screening aside. It will be a task for future research to investigate if and how countries learn from each others’ accountability practices.

9 Ethical boundary work

In the previous chapter, I have analysed concrete accountability practices. Using the example of newborn screening, I have applied a comparative approach in chapter 8 to outline country specific differences of accountability practices and discussed how they are shaped by the respective political cultures. In this chapter, I continue with the analysis of accountability practices by specifically looking at boundary work as is performed during the occasion of research interviews that are geared towards the scrutiny of ethical, legal and social aspects of genetic medicine. Specifically, I focus on the discursive articulation of ethically sensitive issues during the encounter between medical experts and social scientists in interview situations. Exploring ethical boundaries in such a way brings to light what medical experts themselves understand to be ethical problems and how they deal with them (cf. Wainwright, Williams et al. 2006a:734). Evidently, what medical experts address as ethical issues during research interviews with social scientists is also reflected in academic debates and legislation. There is a rich literature on bioethical issues, such as informed consent (Faden & Beauchamp 1986; Wertz & Fletcher 2004) abortion and reproduction (Tooley 2007; Marquis 2007; Chadwick 1990) as well as eugenics (Proctor 1988; Soloway 1990; Duster 1990; Paul 1994), to mention a few examples. But, ethical problems are not only raised by bioethicists or social scientists nor are ethical issues always articulated in the form of fundamental criticism of genetic medicine. Medical practitioners, researchers and other health experts frequently raise ethical issues they find relevant for their work and for which they feel a need to find solutions (Berry 1994; Parsons & Bradley 1994; Ball, Tyler et al. 1994; Harper, Gevers et al. 2004; Murray & Clarke 2002; Hartog & Wolff 1997). The main purpose of this chapter is to demonstrate how the call for (ethical) accountability materializes in research situations in which ELSA researchers request experts of genetic medicine to explain their work and to talk to them about the ethical, legal, and social aspects of it. Using empirical data, I show how professionals of genetic medicine respond to this request for accountability with ethical boundary work.

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Drawing on Thomas Gieryn’s (1999) notion of “boundary work” allows me to analyse the strategic nature of the encounter between biomedical professionals and ELSA researcher during a research situation. I explain how boundary work becomes rhetorically functional for presenting genetic medicine as ethically sound practice and thus allows exponents of genetic medicine to establish and maintain authority over their own field of action. Furthermore, I will discuss how boundary work performed in this a way plays out as subjectivisation practice. I will begin my investigation by providing a conceptual background of the STS literature focussing on boundary work and relate it to recent developments in scientific knowledge production. I continue to discuss six different forms boundary work through which professionals of genetic medicine aim to demonstrate that their own vocational practice can be regarded as ethically sound. In the concluding section, I contextualise the analysed boundary work in a larger science policy development that brings biomedical professionals together with social scientists and their colleagues from the humanities in order to enhance accounting for ethical, legal, and social aspects of scientific practices. This allows me to identify a number of reasons why the observed boundary work is performed and broaden the scope of analysis to a more general science governance perspective.

9.1 C ONCEPTUAL

BACKGROUND

This paper draws on the works of Thomas Gieryn and others (Gieryn 1983, 1999; Anne Kerr, Cunningham-Burley et al. 1997; Bogner 2005; Hallowell, Cooke et al. 2009) who have explored boundary work between what is science and what cannot be regarded as science. However, the boundaries these authors are concerned with are of an epistemological nature. They understand science as the production of truth claims and investigate in which ways the epistemological authority of science is established and maintained (cf. Gieryn 1999:xii). Gieryn further notes: „Properties attributed to science on any occasion depend largely on the specifics of its ‚other,‘ on who or what is being excluded from the cultural space of ‚science‘“ (Gieryn 1999:22). In the interviews I conducted with experts of genetic medicine, boundary work was not predominately, or at least not only, about epistemological issues. Doubtlessly it is important for geneticists to establish the validity of their diagnoses (cf. Berry 1994:29). However, significant communicative effort was invested to prove under which circumstances genetic medicine can be regarded as being ethically sound. Therefore, I propose to take Gieryn’s concept one step further and shift the focus towards boundary work concerned with ethical issues. So far, only a few studies have investigated scientists’ views on the ethical issues relating to their research (cf. Wainwright, Williams et al. 2006a:732, 735).

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Following Gieryn, it is necessary to ask in which specific context such boundary work occurs. In his case studies Gieryn contextualizes science-controversies in a given historical situation. The situation in which ethical boundary work of genetic medicine takes place is a situation in which science has been urged to justify what it does not only against medical peers, but against other social spheres. However, Sheila Jasanoff notes a more general request for “greater accountability in the production and use of scientific knowledge” (Jasanoff 2003b:226). As I have already outlined in chapter 6 and 7 of this study, today there is an increasing demand for scientists to declare to actors outside their own scientific community what their work is all about. The call for more accountability has become an inherent part of science policy (cf. Jasanoff 2003b; Irwin 2006). Many scholars described this trend as a central element of a new form of science “governance” (e.g. Rhodes 1997; Nowotny, Scott et al. 2001; Jasanoff 2005; Irwin 2008). Governance implies the integration of new actors – including social scientists – into science-policy making. Hence, the practice of governing takes place in the interfaces between science, politics, industry and civil society (cf. Miller & Rose 2008). This insight has drawn attention to the role of the public as a relevant audience. STS scholars have shown how scientists construct the public as a significant “other” when they account for their work (Michael & Birke 1994). It is perhaps helpful to mention that boundary work is performed precisely when a clear separation is not a given, but rather blurring. Both developments go together, the blurring of boundaries and the attempts to (re-)establish them especially in areas of medicine where research and clinical care become increasingly intertwined (Hallowell, Cooke et al. 2009; Miller, Giacomini et al. 2008; Wainwright, Williams et al. 2006b). It is argued that medical professionals cross boundaries in their daily practices, but they also establish new ones. The paper at hand is mainly concerned with the latter and aims to show how medical experts draw boundaries when giving an account of their work to social actors outside their own domain.

9.2 M ETHODOLOGY The presented argument of this chapter is grounded in the empirical material produced by interviews with experts in genetic medicine, including geneticists, genetic counsellors, gynaecologists, paediatricians, oncologists, and pathologists who perform genetic testing as well as scientists of genome research. Purposive sampling was used to obtain a sample of 30 experts. The chosen interviewees worked in the major centres for genetic medicine in the Austria. A number of the interviewed medical experts carried out prenatal testing; another group worked in the field of paediatrics and neonatology. In addition to these two main groups a broad range of experts in other medical fields in which genetic tests are applied was covered. Guideline-based interviews were carried out, audiotaped, and transcribed verbatim. The interviews

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were carried out in the offices of the interviewees and were typically one to one and a half hours long. All interviewees were informed about the purpose of the interview and asked for consent to using the material for research purposes. Computer software (atlas.ti) was used for data management and qualitative analysis. For further details on the applied methodology see chapter 3 of this volume.

9.3 B OUNDARY

WORK EXAMINED

In applying a flexible and open qualitative approach, emergent concepts were identified and coded in the transcripts (Strauss & Corbin 1996). Based on the initial coding, similar explanations of the interviewees were grouped in broader categories. Along these lines, I structure my analysis according to six discursive themes: 1) distancing the present from the past, 2) creating images of pure medicine, 3) dealing with reproductive issues, 4) establishing professional authority, 5) reasons why outsiders are needed and 6) mavericks and those who cannot provide valid results. Using these discursive themes allows me to identify boundary work that distinguishes between medical insiders and outsiders, epistemological and ethical aspects of genetic medicine, legitimate and illegitimate forms of genetic testing as well as decisions that should be made by medical experts and such that need to be made by patients, politicians or society. Each of these variations of boundary work allow conclusions to be drawn about the relationship between medical experts and interviewing social scientists; how the purpose of the social study of genetic medicine is perceived and what strategies are deployed in order to respond to the requests of medical outsiders who come and want to know more about genetic medicine. Separating the present from the past Given the history of the 20th Century it is important to ask as to whether modern genetic medicine needs to be seen as a continuation of eugenics. Whenever this question was discussed during my interviews, I encountered a desire to distance current medical practices from the past. Discursive demarcations were most pronounced in the context of reproductive decisions and predictive testing. Although this is certainly not surprising, it is nevertheless interesting to analyse how this boundary work was performed. To begin with, it is necessary to mention that the interviewer did not explicitly mention eugenics, but rather asked what was important for current medical practices and if there were ethical standards relevant for genetic medicine. A historical perspective was introduced by asking when genetic testing was established in the institution of the interviewee. In such a way, the topic was brought up more broadly and

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the interviewee could decide whether or not to make a connection to the eugenic past. In the following excerpt, the interviewee makes a connection and explains: “Well, principally this comes from foreign countries. Because when one looks at the development of human genetics then it certainly does not come from Germany or Austria, but from other countries; whereas this has again a historical background. Because at that time, in the Third Reich, human genetics had a very negative smack. And therefore also the development lags behind for understandable reasons in Germany and Austria.”

If addressed, Nazi eugenics was presented as a negative reference point of modern genetic medicine. It was explained why, and in which way the current medical practice is, in fact, different from the disapproved past practice. Addressing the eugenic past in an interview situation was, however, not as common as one might think. Only a few interview partners explicitly mentioned eugenics and spoke openly about it. My interpretation of this discursive behaviour is that the past is a “silent reminder”. The demarcation against the eugenic history works in a tacit way (Wieser & Karner 2006). What is expressed instead is what demarcates the present from the past. The main proof which was brought forward to demonstrate that genetic medicine is not “eugenic” draws on the principle of decision autonomy manifested in the form of informed consent. The argument can be summarized as follows: because patients can decide for themselves, today’s genetic medicine is fundamentally different from state doctrine and ideological health imperatives. In this rhetorical strategy, a legitimatory motive comes to the fore quite clearly. It is only because the counsellor provides non-directive counselling that decision autonomy can be secured. The following quotation gives a flavour of how this is typically expressed in research interviews: “And this is certainly a major task of counselling, before such a molecular-genetic examination begins: To speak with the people about the nature or the possibility, the limits, the problems that result from a molecular-genetic examination. And they think about it then, and say, ‘Ok, given these circumstances, well, I do not need it.’”

Quite clearly, the interviewed genetic specialist presented informed consent on the basis of non-directive counselling as the way to go in order to secure decision autonomy. As a matter of fact, decision autonomy can be regarded as the ethical backbone of genetic medicine (Wertz & Fletcher 2004; Faden & Beauchamp 1986; NSGC 1993). However, the reason why it is important to demonstrate how experts of genetic medicine talk about decision autonomy, is because it reveals the practices by which these principles become established as ethical standards of genetic medicine in relation to the interviewing social scientist during the research interview. I will return to the performative function of ethical boundary work later in this paper.

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Creating images of pure medicine A recurring motive during interview conversations between social scientist and medical experts is the construction of “pure medicine”. In other words, medicine becomes presented as a realm separated from ethical implications or political action. Even though, the Mertonian ideal of a “disinterested” science, which does nothing else but produce truth, (Merton 1996[1942]) is considered to be outdated and inadequate in current social studies of science, my data suggest that, in specific discursive situations, the theme of pure “truth-speaking” becomes rhetorically re-produced. Pure science is a discursive construct that results from boundary work, as Gieryn has prominently demonstrated (Gieryn 1999; see also Latour 1993). Thomas Gieryn notes: “Finally, scientists will draw boundaries between what they do and consequences further downstream—the possible undesired or disastrous effects of scientific knowledge— in order to escape responsibility and blame (which often come coupled with intrusive demands for accountability of restriction)” (Gieryn 1999:17). Rhetoric versions of pure science emerged from science policy controversies and particularly in the context of struggles over research funds. Similar constructions of pure science can be found in the boundary work between “applied” and “basic research” (Calvert 2006:202, Kline 1995), and Hilgartner explains that purification is characteristic of scientific policy advice (Hilgartner 2000:4). Also in the context of genetic testing we can identify a similar purification which claims that genetic testing is nothing more than revealing the truth about a patient (Berry 1994:31). Medical action is portrayed as a purely epistemological act that can be separated from ethical implications. The separation of epistemology and ethics was introduced by Descartes and is fundamental for modern science (Foucault 1997[1983]:279-280). We find this classical Cartesian boundary work reflected in the attempts to present genetic counselling as pure “truth-speaking”. All other aspects of testing are attributed to other actors, such as the patient (to decide upon testing) or politicians (to decide whether and how testing should be allowed). In the analysed research interviews, I found a rhetoric strategy that separates practitioners of genetic medicine from those who seek their services. Here is an example of an interviewee who draws this boundary to present genetic counselling as pure truth-speaking. The following extract illustrates this point: “Yes, that we know, we can offer that. We can verify that and we can tell the patient, or the [mother]-to-be, the pregnant woman: ‘the prognosis for your child looks like this and that, and you also have a possibility not to continue this pregnancy and to interrupt the pregnancy.’ Only, no physician can make this decision, but we can just provide the diagnosis. And the decision, whether or not the pregnancy will be continued must stay with the woman or the pregnant couple.”

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Drawing boundaries like that defines the job of those working in genetic medicine as having to get the facts right. Decisions are not made in the laboratory. Medicine is a service that delivers “truth” – a truth that is free from any contamination with ethics or politics. All aspects which comprise ethical implications become translocated across the rhetorically established border, where all the other social actors reside who are supposed to deal with the implications: patients who are expected to make decisions or policy-makers who are supposed to enforce regulation. The result of this demarcation is an image of pure medicine that can be used as a powerful rhetorical device to demonstrate that ethical concerns must not be addressed to those who are “only” concerned with pure truth speaking. Following Thomas Gieryn, statements like the previously quoted can be interpreted as the attempt to establish professional authority. However, it is not the epistemological authority which is defended by the cited interviewee, but the ethical status of genetic medicine. The drawn boundary does not separate what is true and what is not true (epistemological boundary work), but what is an ethical problem and what is not. The position suggested by the interviewee claims that genetic medicine can act with authority, because pure truth-speaking is ethically neutral. The paradoxically genetic medicine is declared to be ethical, because it does not deal with ethical problems. Dealing with reproductive issues It can be argued that reproductive choices constitute a focal point of ethical reflection in genetic testing. Consequently prenatal testing becomes a hot-spot of ethical boundary work. The ethical problem that is at stake here is the possibility that the result of a genetic test may result in the termination of a pregnancy. The classic approach in dealing with this issue is again decision autonomy (e.g. Chadwick 1990; Marquis 2007; Tooley 2007, Hartog & Wolff 1997). Only if the pregnant woman explicitly consents may a prenatal examination of the foetus be performed. The analysed interviews leave no doubt, that for them this is an essential requirement prior to amniocentesis and CVS. Despite the unquestioned consensus about the importance of decision autonomy, in relation to prenatal testing I could observe boundary work that runs right through the medical domain. Ethical boundary work is performed along the lines of the division of labour in the medical system. This communicative strategy can be found when the interviewer asked if a given genetic examination prompts reproductive issues. On occasion, my interviewees confirmed that this would be the case, but at the same time they made it very clear to me that they would refer everybody to the human-genetics department where genetic counselling is offered. After being asked about the procedure for discussing reproductive issues, one interviewee explains: “This will be discussed at the human-genetics (department).”

146 | H OW GENES MATTER “I mean, it’s coming up, but I send literally everybody over to the human-genetics (department). Because only like that it is correct.” “Everybody is passed on because there is no other way.” All three quotes are from the same interviewee

Against this backdrop, a specific way in dealing with the ethical implications of prenatal testing can be observed. The ethical problem is delegated to other departments of the medical system. The point is that interviewees can keep their own field of action free from any moral doubt by simply passing on the obligation of dealing with reproductive issues to other colleagues. This kind of boundary work generates a legitimatory benefit. It is no longer necessary to justify one’s own professional task if it can be demonstrated that one is not involved in parents’ reproductive decision making, not even with non-directive counselling. Dealing with reproductive issues is simply somebody else’s business. Another example of this is the following passage: Interviewer: “And do you carry out the conversations with the families?” Geneticist: “No! Well, we collaborate with the Medical Biology (department), specifically with doctor (name). Well, we are in contact with the families. If they want it, well, if they say they would like to know exactly how the method works and such things... the usual way is that families go to the Human-Genetics (department) and receive their genetic counselling there and we get the samples and perform the analysis and send back the results to the Human-Genetics (department).”

Interviewees who applied such a communicative strategy could bring the issue to a closure. It was not necessary for them to discuss the ethical implications of reproductive issues any further; at least it was not necessary to do so with the interviewer. The division of labour becomes utilised as a way to deal with ethical problems through delegating responsibility from them to other departments. Establishing professional authority In contrast to applications of genetic medicine which are portrayed to be ethically sensitive, there are also other forms of diagnosing genetic diseases that are considered to be comparably straightforward. Newborn screening is often located at the less problematic end of the spectrum. The major ethical argument in favour of newborn screening is that testing can secure a more effective treatment for those who are identified early. Because early diagnosis can influence the “natural course of the disease” in a positive way, it is possible to justify why screening should be performed as early as possible. A paediatric geneticist explains:

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“Well, one has to say: which diseases should be covered with screening? Diseases that are well treatable – a) and b) diseases, where no time must be wasted in the diagnoses, at the diagnoses, where it is already too late when the children develop symptoms.”

In essence, the communicative strategy of the interviewed experts reflect the WHO screening criteria, also known as the Wilson and Jungner criteria (Wilson & Jungner 1968) of which the possibility of therapeutic options was the one that was most frequently drawn upon. Helping those who are in need with well-timed treatment does not only draw on the classical medical ethos and creates meaning for those who can provide it, but the prospect of its success also provides a very persuasive argument. Now, even a doubtful medical outsider should understand why newborn screening is a meaningful medical activity. Furthermore, it can be argued that the demarcation between different forms of testing becomes discursively functional. Ethical legitimacy is generated by pointing out that predictive or probabilistic forms of testing are not part of newborn screening. Because these ethically sensitive applications of genetic medicine are kept on the other side of the drawn boundary, newborn screening obtains a legitimatory gain. In the following excerpt, a pronounced boundary is drawn against any form of screening which does not help to influence the natural course of the examined condition in a positive way. “Well, I mean, what do I get from that? I can’t treat it. The only ones who could benefit from that are insurance companies which calculate the rate accordingly. Well, I regard that to be unacceptable – to act here in the sense of screening. I mean, naturally always given that it is not properly treatable. I mean, if in 10 years somebody says there is a treatment option, then it is different. Then one has to think about it again and ask: what is the benefit?”

Effective therapeutic options make all the difference for this interviewee. As soon as they are available the medical practice can justifiably be re-organized. Another aspect of the outlined argumentation is its strong focus on medical criteria. It requires a thorough medical expertise to assess the diagnostic quality of a given genetic tests. By explaining the significance of the criteria according to which it can be judged whether screening among newborns is beneficial for the tested individuals, medical expertise is emphasised in this matter. In such a way, a boundary against outsiders becomes established and maintained; a boundary against all those who do not possess the required medical expertise to judge the issue knowledgeably. Following Gieryn’s it can be stated that the medical experts establish authority on their own professional territory and claim the power to decide how their own field of action should be organized (Gieryn 1999). This kind of boundary work not only denies expertise to lay-man, but even to physicians from other fields who would not know enough about genetics.

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Why outsiders are needed Maintaining professional authority is indeed a complicated matter. As important as it is for post-eugenic medicine to demonstrate that it is not instrumentalised by ideological forces, genetic medicine needs politics to take on complementary tasks that allow medicine to maintain its pure (epistemological) practice. When asked what he thinks about carrier screening the interviewee quoted below expressed his reservations about this form of genetic testing, although he acknowledged that both the American and the European Human Genetics societies are in favour of carrier screening for certain conditions. “I don’t know. I think that regarding cystic fibrosis it is more likely that therapeutic means will be developed. Because, in principle, such a [carrier] screening would involve very, very big ethical problems. But society has to discuss this [issue]. So, if theoretically society wants that, then it is ok.”

Here, the regulatory power is deferred to society. It is not a task for pure medicine to decide issues such as the introduction of a carrier screening programme. In such a way, politics is invited to tell medical practitioners what to do. Although the political sphere is carefully allocated outside of pure medicine, in specific circumstances, it seems necessary for politics to intervene into the medical field in order to save the ethical reputation of genetic medicine. Also in the following excerpt, political actors are asked to overrule professional autonomy of genetic medicine. Paradoxically pure medicine appears to be a result of political intervention. The interviewee explains why he thinks that self-regulation is not sufficient for genetic medicine. In an interview addressing the diffusion of high through-put technologies and their application in the context of newborn screening, a paediatric geneticist stated: “Well, I think nothing of that [to generate a risk-profile for newborns]. And there are supposedly plenty with whom one has to discuss it seriously. And I simply think that politics is urged not to comply with that because the seduction is obviously big. What is technically possible will be carried out. And I mean, every group has obviously its own interests and, well, as I said, it is basically politically-socially significant. I mean, I can’t leave it to those who work with these kinds of things, can I? They will always say it is incessant and indispensable and apparently necessary.”

The presented excerpt shows that, for the quoted interviewee, it is harder to claim ethical legitimacy for genetic testing, if it is “polluted” with self-interest. Medicine cannot remain self-regulated particularly when it needs to ward off commercial interests of certain colleagues in the field who are not considered to perform “good medicine”. Consequently it becomes clear that boundary work is not only performed

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to ward off or to demarcate against medical outsiders against, but also within the medical field itself. Mavericks and those who cannot provide valid results Specialists offering genetic testing do not belong to a homogenous group. This becomes apparent when interviews touch upon the issue of commercial genetic testing (e.g. direct to consumer testing). In the analysed interviews, reservations were often expressed by associating them with two scenarios which were not considered to be legitimate forms of genetic testing. These objected medical practices were: a) testing when counselling is not provided and b) testing when the laboratory cannot provide valid diagnoses. During the conversation, my informants pointed out the ethical sensitivity of genetic testing and hence concluded that there is a need for thorough counselling. In order to make their point, they often explained the implications of predictive testing. As in the following excerpt, Huntington disease was often used as a typical example to explain the problematic nature of pre-symptomatic diagnoses of untreatable diseases. “Well, if for example somebody requests a predictive counselling for Chorea Huntington – that is the classical example, but it also applies to many other diseases – then we only do this according to the respective guidelines. These are from the world association of neurology; these are from the world association of, from the International Huntington Chorea Association. And this [association] says for example that this whole matter can only be carried out if a psychological counselling is provided, otherwise they disapprove of that. We would not do that.”

When explaining the course of action for Huntington disease my interview partners repeatedly pointed out how careful this process is carried out. They explained that a psychologist is always present during the counselling and they also make sure that a second person close to the tested person is present in order to provide emotional support when the results are disclosed. Most of all the interviewed genetic specialists left no doubt that predictive testing is only carried out on the basis of the explicitly declared will of the patient. Explaining the importance of thorough counselling, geneticists establish a norm according to which predictive testing can only be carried out in an ethically appropriate form if it is performed on the described basis. Along these lines, genetic experts voiced their concerns with regard to all forms of testing where thorough counselling cannot be secured. This was their main concern regarding the commercialisation of genetic testing. The rhetoric strategy of the depicted expert accounts divides medical practice into legitimate and illegitimate forms of medical practice. The benefit from this kind of ethical boundary work is that the demarcation against mavericks who do not provide proper counselling bestows ethical legitimacy to those who do.

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Of course, epistemological boundary work can also be found in expert accounts. The interviewees explained how important it is for their work to get the diagnosis right. Only if one can produce valid results is genetic testing justifiable. The strong emphasis on the validity of the truth claims of genetic testing draws a boundary against those who cannot produce test results of the necessary quality. The argument was often directed against private laboratories who offer their services direct to consumers. Here, the illegitimate form of genetic medicine is one that wants to make money and therefore prioritises commercial logics over patient interests (cf. Levitt 2001). Occasionally this criticism is expressed directly in economic terms. Also here the construction of “pure science”, or as it is used here “pure medicine”, comes to the fore. Just as Robert Merton claimed for science (cf. Merton 1996[1942]), also medicine must not be interested in profits, but revealing the truth in order to help individuals with health problems is the core of ethically sound medicine in its presented form. In such a way, a norm is communicated: medical practice can be regarded as ethically sound if it serves the patient and is not compromised by commercial interests. It is, however, interesting to note that my interviewees spoke more often about quality assurance with respect to private services. In other words, demarcation against the private sector was voiced in epistemological terms. In condensed form, the presented argument can be summarized as follows: those who cannot meet quality standards and those who are not able to interpret the results of a genetic test appropriately should not offer such services. In the following excerpt, the interviewee emphasises quality standards as key criteria: “Such a genetic laboratory, a molecular genetic laboratory must to be certified. This is subject to very strict guidelines, subject to control guidelines. You have to commit to participating in Europe wide round robin tests twice a year so that your diagnoses and your interpretations of the diagnoses become evaluated. And a small laboratory won’t do that. This is too much for it. If it meets these requirements, then it is o.k. anyway. Because then it has got a geneticist on board, too. Because without one, it isn’t possible anyway.”

When explaining this conclusion to the interviewer the demarcation against medical mavericks enacts a demonstrative function. It allows those who articulate it to display that they are capable of providing good medical practice. The demarcation serves as a rhetorical device to demonstrate that the speaker performs genetic medicine in the proper form. In such a way, legitimacy can be derived from the demarcation against mavericks who are not able to produce valid results and interpret the results appropriately. Here, epistemology and ethics become intertwined. Because one can produce correct results, it is ethically legitimate to offer such a service. Against this backdrop, it becomes clear that the communicative strategy is not always consistent;

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sometimes epistemology is kept apart from ethics; sometimes they are interrelated, depending on the actual communicative context in which they become articulated.

9.4 C ONCLUSION Going through interview data collected over the course of more than eight years of ELSA research, I discovered that boundary work is a general feature of conversations between experts of genetic medicine and interviewing social scientists. If these conversations have anything in common, boundary work is doubtlessly amongst it. The aim of the presented analysis was to show, how boundary work is precisely performed and what aspects of genetic medicine it concerns. On the whole, it was found that boundary work is predominantly performed in relation to ethical issues. Six rhetorical strategies can be distinguished. The interviewed professionals of genetic medicine are pursued to draw boundaries between a) the (eugenic) past and the present, b) decision making and truth-speaking, c) the responsibility to council and the responsibility to treat patients, d) legitimate and illegitimate forms of medical practice, e) medicine and politics as well as between f) those who are able to produce valid results and those who are not. These rhetorical demarcations allocate social actors on both sides of the established boundary. They distinguish between a) ideologically blinded and politically enlightened geneticists, b) decision makers and truth-workers, c) counsellors and therapists, d) experts of genetic medicine and those who cannot define legitimate forms of genetic medicine, e) medical insiders and outsiders as well as f) selfish money-makers and altruistic medical professionals. Boundary work as an analytical framework becomes particularly fruitful when highlighting its performative character. Gieryn writes with regard to his own case studies that “‘familiar’ demarcations […] become familiar only because they are explicitly and emphatically reproduced on occasion” (Gieryn 1999:232). I have talked to several of the interviewed experts of genetic medicine more than once and heard them speak on other occasions, too. They never seemed to tire of making their point again and again. Nearly every interviewee pointed out the importance of informed consent as a necessary prerequisite to genetic testing. But, why is it so important to them to communicate decision autonomy as the core ethical principle of genetic medicine? Or to phrase it more generally: in which ways is it beneficial for experts of genetic medicine to perform ethical boundary work? The answer given in this chapter is that boundary work is rhetorically functional for presenting genetic testing as ethically sound medical practice. Performing ethical boundary work allows experts of genetic medicine to establish and maintain authority over their own field of professional action (cf. Gieryn 1999). Discursive boundaries are drawn to separate what counts as “good medical practice” from what does not. Once this distinction is made clear ethical legitimacy can be derived from it. Thus,

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the distinction becomes functional for the interviewee to demonstrate that his or her own professional practice is ethically sound. Through these distinctions the interviewed medical experts subjectify themselves. Distinguishing oneself from those who are allocated on the other side, boundary work is functional for constituting and presenting oneself as an ethically sound actor in the field of genetic medicine. This rhetorical strategy was regularly found to be used in order to ward off potential or actual criticism of genetic medicine. In such a way, professional authority becomes established and the conversation with the interviewing social scientist can be brought to a communicative closure. Michael and Birke remind us that boundary work is about the other. They have demonstrated how scientists rhetorically distinguish themselves from the public and thereby constructed an entity of the “other” (Michael & Birke 1994). The significant other in the context of my own research turned out to be the social scientists. It is the interviewer in relation to whom boundary work is performed. Taking into account that the purpose of ethical boundary work is to convince the interviewer that genetic medicine is ethically sound, it becomes clear that the research interview must be seen as directed communication and not just as a neutral data-gathering instrument (cf. Lee & Roth 2004:3; Kezar 2003:400). Rather than merely describing how they see their own work, experts of genetic medicine anticipate how their statements might be interpreted and hence try to articulate themselves in such a way that the presumed conclusions of the interviewer correspond with the desired image they wish to communicate. In this respect, research interviews are no different than any other social situation (Alasuutari 1995:90). In order to fully appreciate the reasons why medical experts have an interest in a particular image of their field, it is necessary to recall the circumstances under which genetic medicine is carried out today. As I have argued in chapter 6, science in general, and genetic medicine in particular are increasingly challenged to demonstrate accountability. One of the main reasons why bioscientists have an intrinsic reason to comply with this request for making their work more transparent to the public is certainly the need of funding. Genetic medicine is very resource intensive both in research and clinical practice. A reliable source of public funding is crucial for the development of this field. However, ethical and social concerns may result in public controversies and consequently in declining support for genetic medicine. The crucial point here is that science, policy and the public are increasingly interrelated (cf. Jasanoff 2003b; 2005; Irwin 2006; 2008). Policy-makers are key actors to secure funding and political support, but at the same time they react to public opinion. For this reason, it is decisive for those who have an interest in receiving public funds and political support for their work that neither decision-makers nor the public (as a vital influence on politicians) come to the conclusion that genetic medicine entails major ethical and social problems. It is therefore crucially important for empirical analysis of the ethical, legal, and social aspects of genetic medicine to take into account what

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is at stake for those who are studied. What is said during the interview is always filtered through strategic goals to protect one’s own field of work and to win support of relevant social actors such as policy makers, funding providers and those who provide the former two with expertise (e.g. ELSA researchers and other social scientists) or influence their decisions (e.g. stakeholders or the public). In chapter 7 I have outlined the circumstances under which ELSA research has emerged and became introduced as a seemingly adequate tool to deal with public opposition to modern bioscience. From this perspective, ELSA research is an intervention. Its main purpose is to make scientific practices publicly more accountable. The receivers of public funding are encouraged to explain their work, why they think it is worthwhile to fund it and what benefits it can bring to society as well as which drawbacks it maybe imply (cf. Maasen & Lieven 2006; Kurath 2009). Since it is interviewing social scientists who ask related questions, it is consequently them who boundary work is performed with. However, the way in which boundary work is performed reflects a larger development in science and how it is governed. Policy makers seek suitable measures to make contested scientific practices more transparent and accessible. Science as a social practice that has traditionally claimed autonomy for itself is now faced with increasing efforts to govern its research agenda, risk management, quality control and certainly not least the distribution of its resources (cf. Gibbons, Limoges et al. 1994; Rhodes 1997; Nowotny, Scott et al. 2001; Kirton & Trebilcock 2004; Jasanoff 2005; Irwin 2008). Only when appreciating these larger developments in science governance it becomes fully clear why medical experts seek to demonstrate that outsiders lack the required knowledge to understand the matters that their own professional practice is ethically sound. The boundary work as performed during the research interview with a social scientist can be interpreted as a response to these larger developments in science governance. It indicates attempts to secure authority over one’s own professional practice that is no longer granted unchallenged. If we agree with Gieryn that boundary work is often driven by power struggles (cf. Gieryn 1999), then the ethical boundary work as examined in this chapter is driven by a struggle over how science should be governed. As a field that has traditionally claimed self-regulation, science is increasingly confronted with external governance practices. Stimulating accountability such as the encouragement to answer questions about its ethical, legal, and social aspects was identified as one of the key measures in this regard. Professionals of genetic medicine enrolling in this agenda cannot only constitute themselves as ethical subjects, but when answering questions of ELSA researchers, they also subjectify themselves in another significant way. Engaging in conversations over ethical, legal and social aspects of their work, professionals of genetic medicine become subjects of accountability. Through their own contribution genetic professionals turn themselves into accountable subjects. At the same time interviewing social scientists encourage them to do so and thereby make professionals of genetic

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medicine accountable. Both of these interrelated processes are effects of a bioscientific network which is also populated by policy makers. The latter are crucially important for bringing professionals of genetic medicine together with ELSA researchers and shaping the very circumstances under which such encounters take place.

10 Subjectivisation of bioscientists

Professionals of genetic medicine are subjectified in three ways. Firstly, they are constituted as subjects through discourses about science in general and the life sciences in particular. These discourses not only define what counts as science and what does not (cf. Gieryn 1983; 1999), but also they define what scientists should do so that society can benefit from their research. Furthermore discourses about science define how researchers should behave in order to obtain resources for their work. In order to make these programmatic discourses effective, policy makers design concrete measures which they seek to implement. With these science policy measures it is, secondly, possible to act upon professionals of genetic medicine and to stimulate them to act in specific ways. Michel Foucault pointed out that governing technologies only develop their full efficacy if, thirdly, the subject contributes and acts upon itself (cf. Foucault 1997[1983]:262; Foucault 1982:208; Foucault 1997[1981]:177). This is the third axis of subjectivisation processes. The subject is a joint product of all three mentioned processes, which I discuss in this chapter one after the other. I focus my scrutiny on the question, how professionals of genetic medicine become a subject of knowledge in the context of bioscientific research. The classical form to discuss this question is to frame it as epistemological problem. My own concern is, however, not to discuss the idea of a universal subject as a condition of the possibility of knowledge in the philosophical sense. Rather, I strive to ask the question in a specific way and to inquire how individual researchers very concretely achieve a position that allows them to carry out bioscientific research. What are the qualities they must possess as researching subjects in order to being able to participate in scientific knowledge production? One of the decisive preconditions for the possibility to carry out relevant research is the allocation of resources. However, in order to obtain these resources bioscientists need to demonstrate specific competences. In other words, they need to subjectify themselves in very specific ways. As I have demonstrated with the previous chapters, the performance of accountability has become one of the key qualities of publicly funded bioscientific research.

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Subjectivisation becomes enacted through the provision of information about bioscientific practice and by granting access to those who come and request to know more about genetic medicine. Furthermore, professionals of genetic medicine are expected to demonstrate ethical qualities as subjects of bioscientific research. Not least it is in their own interest for professionals of genetic medicine to constitute themselves as ethical subjects. Of course, the subjectivisation as an ethical subject does not happen just like that or simply because bioscientists desire to do so without particular reason. It is crucially important to understand this type of subjectivisation as an effect of wider societal developments. The ethical problematisation of biomedicine cannot be fully comprehended without taking into account both the eugenic movement of the 19th and 20th Century as well as the terror of the Nazi regime (Wieser 2005; Wieser & Karner 2006). The analysed interviews with experts of genetic medicine emphasise this point, since the interviewees tried to establish a boundary between the present and the past of their discipline (see chapter 9). The ways in which bioscientists constitute themselves as subjects is furthermore an effect of the described changes of scientific knowledge production (Gibbons, Limoges et al. 1994; Nowotny, Scott et al. 2001; Funtowicz & Ravetz 1993; Ziman 1995). These changes can be described as economisation of science (cf. Stehr 1994; Weingart 1999a; Albert 2003; Drori, Meyer et al. 2003). Today, it is no longer sufficient for scientists to demonstrate their academic expertise. In addition, they especially need to prove their economic competencies. Research is organised in new ways and stimulated to seek collaboration with business and industry (Etzkowitz & Leydesdorff 1990). In addition, scientists are encouraged to broadly communicate about their work and especially to welcome public requests to enter dialog and participatory processes (cf. Irwin & Wynne 1996; Irwin 2006; Wynne 1993; 2006; Felt 2003; Felt, Fochler et al. 2003a, Jasanoff 2003b). In this chapter, I argue that professionals of genetic medicine are urged to acquire these qualities in order to become a subject of knowledge in the field bioscientific research. To this end, I analyse programmatic science policy discourses declaring requirements of scientific research and outline the demands for those who carry it out. At first, I study OECD and EU documents for this purpose. Furthermore, I will demonstrate how these supranational master discourses become adopted and retold in the domain of national science policy using Austria as an example. In a second step, I discuss the concrete practices by which the mentioned science policy master discourses become implemented; namely in the sense of asking, how science policy makers act upon bioscientists in order to constitute them as subjects of the programmatically requested form. In a third step, I once more discuss how bioscientists contribute themselves and thereby transform themselves into subjects of bioscientific research.

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NARRATIVES

The first axes of subjectivisation concerns the discourses that constitute scientists in general and bioscientists in particular as subjects of knowledge. These discourses define – at least implicitly – what competences a person must possess in order to qualify as a scientist. Reviewing the current science policy discourses, it is impossible to overlook a trend that demands from scientists the ability to work in interdisciplinary teams and to collaborate with persons from business and industry (cf. OECD 2011, European Commission 2010a, European Commission 2011a). Moreover, scientists are expected to communicate with non-peers. In particular, they are expected to possess the ability to explain their work to the public and to give account about their research practices (cf. European Commission 2011b). Especially narratives about economy, acceptance and participation are central elements of current science policy discourses. When analysed as subjectivisation processes, the competences demanded in science policy documents encourage scientists to constitute themselves as entrepreneurial self (cf. Bröckling 2000, Lemke 2000, McNay 2009, Rose 1999; Rose 2007; Miller & Rose 2008). In particular, they are urged to do so towards their funding agencies, the media and the public as their most significant audiences. Scientists must demonstrate managerial abilities and that they can reason in economic terms. In particular, scientists need to prove that they are able to organise their own research activities in such a way that they result in commercial products. These discourses stimulate specific qualities and competencies of the researching subject and thereby they initiate and shape subjectivisation processes. Growth As an international organisation the “Organisation for Economic Co-operation and Development” (OECD) ignites the beacon that defines the programmatic direction of science policy. The efficacy of OECD guidelines for national policies can hardly be overestimated. The declared goal of the OECD is to promote policies aiming to improve economic and social well-being. From the OECD point of view, there is only one way to achieve this goal: economic growth. This has immediate consequences for science policy: scientific research and technological development are perceived as instruments suitable to achieve the desired growth (cf. OECD 2010). Research and development power the engine of innovation and, therefore, they are understood to be central ingredients of economic growth. In its Science, Technology and Industry Outlook 2010 the OECD states: “In the wake of the financial crisis, science, technology and innovation (STI) will make a vital contribution to a sustainable and lasting recovery and to the longer-term growth prospects of

158 | H OW GENES MATTER OECD and non-OECD economies. STI can open new avenues to meet some of the major challenges facing societies: demographic change, global health issues and climate change. To deliver on these agendas, it is essential for countries to maintain productive investments in knowledge. STI has never been more important.” (OECD 2010:2).

From this point of view, science and technology have no other significance than their contribution to economic growth. At least, the OECD awards no attention to other values of science and technology. Seen from this perspective, scientists are first and foremost subjectified in economic terms. Because of the economic significance, attributed to science and technology, the OECD emphasises the key function of human resources for innovation and concludes on the necessity to invest into this area (OECD 2011:72). Amongst the workforce in science and technology researchers and especially doctoral graduates are credited with particular importance as expressed in the following statement: “Doctoral graduates are key players for research and innovation. They have been specifically trained to conduct research and are considered the best qualified for the creation and diffusion of scientific knowledge” (OECD 2011:68). This viewpoint is the basis for national policies to invest in higher education and related science policy goals – a policy that is also reflected in the Austrian Genome Research Programme (cf. GEN-AU).1 Along these lines, the OECD states: “An economy’s capacity to draw human resources into research is the basis for creating new knowledge and advancing economic activity” (OECD 2011:70). Against this background, it becomes clear why so many efforts are made to get young pupils excited about starting a career in science and technology and hence turn them into subjects of science. It is important to note that the nation state is a central actor in funding and shaping scientific practices. Even though about two thirds of research and development (R&D) investment comes from the business sector, basic research is still conducted in universities (cf. OECD 2011:76). About three-quarters of all OECD basic research are government and university performed (OECD 2011:78). This shows that the largest share of funding for basic research comes from governmental funds. There are two main modes of direct R&D funding: institutional and project-based (OECD 2011:78). The OECD identifies project-based funding as an instrument to “promote competition within the research system and target strategic areas” (OECD 2011:78). Both strategies can be traced in the Austrian science policy and especially in the support of bio-medical research (cf. GEN-AU).2 In search of new growth areas the

1

Source: http://www.gen-au.at/content_index.jsp?id=76&base=foerdern&lang=en; last ac-

2

Source: http://www.gen-au.at/content_index.jsp?id=76&base=foerdern&lang=en; last ac-

cess 5. 10. 2011. cess 5. 10. 2011.

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OECD has identified health innovations and biotechnology as key target areas alongside environmental technologies and ICT technologies (cf. OECD 2011:120). Consequently, the linking of public research institutions (where basic research is mainly performed) with business (where commodification should happen) is crucial from an OECD point of view. One of the central activities of the OECD is the provision of indicators. These indicators are very powerful instruments and they shape national policies quite effectively. These economically driven OECD indicators filter through science policy and dominate quality assessment of universities and governmental research institutions. Despite the difficulties to determine how scientific knowledge is actually converted to economic productivity it is important to observe the logic these OECD promoted indicators exhibit. Economic growth is defined as the main reason for investment in science and technology and it sets the agenda for universities that are the main beneficiary of governmental R&D budgets (cf. OECD 2011:118). The powerful paradigm designed by the OECD is not only effective on the policy level, but also it seeps through to the level of the individual research subject. The OECD approach constitutes a discourse that privileges entrepreneurial talent and culture as key qualities of scientific activities. In a conclusive statement from the “OECD Science, Technology and Industry Scoreboard 2011” this is expressed as follows: “Entrepreneurship empowers people to take their future into their own hands, whether through self-employment or by creating a firm that employs other individuals. A country’s entrepreneurial activity ranges from self-employment to the creation of high-growth firms. While data is not available for all these types of entrepreneurs, selfemployment data is available and helps shed some light into the diversity of entrepreneurs in a country.” (OECD 2011:156)

The desired qualities are not only expected from business men, but also from scientists and those who work in academia. Due to the strategic importance of the OECD this discourse – that essentially casts academics as entrepreneurs – unfolds utmost effectiveness. Through the application of OECD-developed indicators, a type of logic prevails that is adopted by national policies without further thought. Hence, the significance of the OECD is its power to determine a paradigm that sets the standard for the entire Western world (if not beyond). In such a way, a dominant economic discourse comes into existence that cannot be underestimated in the power of its programmatic efficacy. Competitiveness There cannot be any doubt that the European Commission follows the science policy paradigm as outlined by the OECD. The emphasis on economic goals in EU policies is reflected in the so-called “Lisbon Agenda”, a strategy that seeks to enhance com-

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petitiveness (cf. Europäischer Rat 2000). Science and technology are expected to secure the economic future of the member states and consequently given a key-role in this regard. The leading vision is a “knowledge based economy” (cf. Harris 2001, Godin 2006; see also European Commission 2002a:3, OECD 2001:3, 7-13). Ten years after the declaration of the Lisbon Agenda, economic growth is still the main target of EU research and innovation policies. However, in the “Europe 2020” strategy a few adjectives have been added: “smart”, “sustainable” and “inclusive” (cf. European Commission 2010b:3). Nevertheless, the directive of the European Commission is clear: growth through innovation: “At a time of public budget constraints, major demographic changes and increasing global competition, Europe's competitiveness, our capacity to create millions of new jobs to replace those lost in the crisis and, overall, our future standard of living depends on our ability to drive innovation in products, services, business and social processes and models. This is why innovation has been placed at the heart of the Europe 2020 strategy.” (European Commission 2010a:2)

EU policy documents are important. They do not only set an agenda that is often adopted by national policy makers without much further comment or revision they also create master narratives. Scientists draw on these narratives when they explain their work to the public and when justifying why it is worthwhile to supply their field with resources. I elaborate on to this aspect further on in this chapter, but before that, I discuss the normative claims of these narratives in some more detail. Two postulations are key, a) research and innovation should be brought together more closely and b) innovation should target “societal challenges” (cf. European Commission 2011a). Energy and climate, health and aging, as well as scarce resources are also objectified as key social problems. Neither is it surprising that the mentioned areas are declared decisive social challenges, nor that dealing with them should “strengthen competitiveness” (cf. European Commission 2011a:13). Defining the agenda like this demands very particular qualities from those who work in science and quite apparently the desired competences exceed scientific excellence. Apart from the omnipresent economic capabilities, EU documents outline additional visions of what scientists are expected to master. A key problem that needs competent handling is the promotion of public support for science and respective science policies. Even if expressed in a more nuanced language (cf. Irwin 2006) than used in OECD documents, the directive of the European Commission is clear: “Now more than ever, science must engage with us, and we must engage with science” (Science in Society). The problem addressed in this statement becomes apparent. It is expressed as a concern regarding public “ambivalence about the role that science and technology play in everyday life” (ibid.). Precisely for that reason scientists are requested to give an account about their professional practices. Engaging with the

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public has become a core competence of scientists. Documents as the aforementioned are powerful elements of subjectivisation processes because they define what type of qualities scientists must demonstrate in order to obtain public resources for their work and hence, to be in a position to engage in the production of scientific knowledge. Scientists are furthermore urged to contribute to the development of scientifically trained human resources. The narrative behind this obligation is once more phrased in economic terms. It reads as follows: “... Europe needs more scientists and more people skilled in science and technology in order to compete in the global arena. It is, however, becoming increasingly difficult to attract young people to science careers” (cf. European Commission 2011b:41). The priorities expressed in this statement explain the reason why public engagement and support is sought after. Scientists must demonstrate accountability and engage with the public, because a) without public support policies like the OECD suggest cannot be implemented and b) without the next generation the capacity of science to contribute to innovation and economic growth will not develop (cf. Commission of the European Communities 2000:17). Based on this problem framing, the European Commission concludes that dialogue is needed, best achieved through “public engagement”. The Commission states: “It is therefore clear that work is needed to forge stronger links between the public and researchers. As well as generating a better understanding of and trust in science among the public, this could also result in a greater sense of shared responsibility between science, policy and society.” (European Commission 2011b:29)

The problem is located. It resides in the relationship between researchers and the public as a “significant other” (cf. Michael & Birke 1994). It is these two groups who need to engage and enter dialogue. The discourse drawn from this policy directive has significant consequences for how subjectivity is constituted. It frames researchers as somebody who needs to explain his or her professional practices and conversely the public is characterised by its desire to obtain more information about what scientists do. Despite of all dialogue efforts it is still clear in this arrangement who has a lack of knowledge and who can provide the respective answers (cf. Irwin 2006; Wynne 2006). The responsibility for scientists is clear; they need to answer to public requests for information. Justified by the commitment to competitiveness and the prospect of a “knowledge-based economy” the Commission concludes: research must be brought closer to society and dialogue with the general public must be initiated (cf. Commission of the European Communities 2000:8, 16). Although new forms of dialogue are welcomed, the logic is still caught in what Brian Wynne has called the “deficit model” (cf. Wynne 1991; Wynne 1993; see also Ziman 1991; Sturgis & Allum 2004). All too often we read that first the public needs to acquire some form of knowledge and then it is capable to participate (cf. Commission of the European

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Communities 2000:16). Or course, the discourse of public dialogue paves the way for a researcher-subject that needs to engage in this dialogue and therefore constitute itself as an accountable subject. These discourses are articulated and performed by institutions such as the OECD and the European Commission and provide a template for national science policies and the respective discourses. The EU gets tough on Ethics Another quality, scientists increasingly need to demonstrate is that their research practice conforms to ethical standards. Hence the subject entitled to produce scientific knowledge is constituted as an ethical one (cf. Michael & Birke 1994). Ethics plays an important role in the discourse about science and technology and especially about modern bioscience (cf. Commission of the European Communities 2000:1314). In a document by the European Commission it reads as follows: “Not everything that is scientifically possible and technologically feasible is necessarily desirable or admissible. Several aspects of the advance of know-how and technology call our basic values and principles into question: respect for life and the individual in connection with cloning and certain aspects of genetic engineering; personal privacy as regards certain applications of information technology; our obligations towards our future generations, with the prospect of changes to the climate and the global environment, etc.” (Commission of the European Communities 2000:13)

The cited statement demands common rules and principles which are in the end supposed to inform the law-making process. Quite obviously, the outlined argumentation follows the approach of ethical principlism (cf. Beauchamp & Childress 1994, Kuczewski 1998), which of course can be criticised. However, it is much more important to note that the mentioned discourse proclaims an imperative which reads as follows: science has to be ethical! More than ever, the European Commission issues this demand: “For example, all EU-funded research activities must comply with a strict ethical code. The European Commission carries out an ethical review of project proposals that raise sensitive ethical issues, and takes each review into account when determining which proposals will se3

cure funding.“ (European Commission)

Ethical review – judged by a specific ethical code – has become part and parcel of the European research funding system. It is a legal requirement that all applicants

3

Source: http://ec.europa.eu/research/science-society/index.cfm?fuseaction=public.topic& id=1321&lang=1, last access 29.9.2011.

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need to undergo it. This inspires Mary Fitzgerald, member of the European Commission’s ethics review team at the time, to state: “the EU gets tough on ethics” (Fitzgerald 2007). In a document of the Commission it reads: “Reviewing research projects on ethical grounds at the EU level is a legal requirement under FP7, and is intended to ensure that all research activities carried out under the Framework Programme are conducted in accordance with fundamental ethical principles.” (European Commission)4 The Commission assists applicants with a number of “support activities” to help them meet the given ethical standards. In particular, training of scientists, civil servants and national contact points (NCPs) are provided as well as an “ethical review help desk” and guideline documents and checklists. The help desk supports researchers in dealing with ethical issue. However, in its effort to make research funded by the European Commission ethically sound, it does not enhance ethical reflection or deliberation, but it offers advice on “how to get through ethics”, which is of course consistent with ethical principlism; an approach that holds philosophers and theologians responsible to determine what is ethical and demands compliance from those who work in science.5 Summing up, the legal requirement that all applicants must undergo ethical review is of utmost significance. Using the language of ethical principlism this requirement enforces a discourse of ethical rules and principles for which it demands compliance. In such a way, the European commission acts as a powerful discursive actor that plays a key role in the shaping of a discourse that subjectifies bioscientists as ethical subjects. National ratification A review of relevant policy documents demonstrates that Austria adopts the science policy approach as designed by OECD and EU without much alteration. The same economic narratives are retold in programmatic statements of the Austrian Federal Ministry for Science and Research. Apart from demonstrating the power of OECD and EU to shape national policies, I argue that these discourses define in important ways the competencies scientists need to exhibit in order to obtain the resources necessary for scientific knowledge production. Despite its fairly a-personal rhetoric style, I suggest to read the statements outlined below as normative demands addressed to scientists applying for governmental funding.

4

Source: http://ec.europa.eu/research/science-society/index.cfm?fuseaction=public.topic& id=1321& lang=1, last access 29.9.2011.

5

Source: cf. http://cordis.europa.eu/fp7/ethics_en.html#ethics_cl; last access 29.9.2011.

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In its mission statement the Austrian Federal Ministry for Science and Research (BMWF) defines knowledge as capital (cf. BMWF).6 Excellence and cooperation with other EU member states are declared chief priorities. Seeking internationalisation highlights the orientation on EU policies as well as the promise to optimise research infrastructures (cf. BMWF).7 Furthermore, the Federal Ministry emphasises the enhancement of human resources. In this regard, EU goals as defined in Lisbon and Barcelona are mentioned explicitly. Linkage to the private sector and international cooperation are also drawn in relation to human resources and the support of young scientists. EU policies are repeatedly mentioned as a reference for Austrian science policy agendas (cf. BMWF).8 The declared goal of the Federal Ministry for Science and Research is to raise Austria’s R&D intensity and thereby bringing it to a leading position in Europe.9 It is here where explicit linkages to society, economy and politics are drawn. Achieving the desired goal requires “... a joint effort, carried by a broad consensus between society, business and politics (catchword ‘good governance’)” (cf. BMWF, translation BW).10 Thus, science needs to transgress traditional boundaries of “pure reasoning”. Quite obviously this ministerial request reflects the literature on new modes of producing scientific knowledge (cf. Gibbons, Limoges et al. 1994; Nowotny, Scott et al. 2001; Funtowicz & Ravetz 1993; Ziman 1995; Etzkowitz & Leydesdorff 1990). In 2007, in Austria a so called “research dialogue” was held.11 The documentation of this consultation exercise gives an account of the programmatic orientation of Austrian science policy (cf. BMWF 2008b). In the documentation of the “research dialogue” OECD indicators are used both as an assessment of and as a justification for policy decisions such as to increase governmental investment in R&D (cf. BMWF 2008b:4). Evidently, the significance of innovation is highlighted in the report (BMWF 2008b:5). Once more basic research and the development of human resources (including gender mainstreaming) are emphasised. In terms of research topics familiar issues are made a priority: Environment, climate change, energy, health are mentioned and complemented with traffic, the social, migration and security 6

See: http://www.bmwf.gv.at/startseite/forschung/, last access 30.9.2011.

7

See: http://www.bmwf.gv.at/startseite/forschung/national/programme_schwerpunkte/forschungsprogramme_ schwerpunkte_ueberblick/, last access 30.9.2011

8

Source: http://www.bmwf.gv.at/startseite/forschung/national/forschung_in_oesterreich/

9

Source: http://www.bmwf.gv.at/startseite/forschung/oesterr_forschungsdialog/, last access

humanressourcen/, last access 30.9.2011. 30.9.2011. 10 Source: http://www.bmwf.gv.at/startseite/forschung/oesterr_forschungsdialog/, last access 30.9.2011. 11 Source: http://www.bmwf.gv.at/startseite/forschung/oesterr_forschungsdialog/, last access 30.9.2011

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(BMWF 2008b:7). It is however remarkable that in a science policy document the humanities, social and cultural sciences are granted explicit mentioning, since their relevant contribution to the aforementioned socially relevant research topics is acknowledged. “These [humanities, social and cultural sciences (GSK)] contribute significantly to the reflection of the respective societal challenges and needs as well as of the problem framing. In order to satisfy this demanding task adequate institutional, infrastructural and monetary preconditions are, however, necessary. Therefore the expansion of GSK-initiatives is expedient, which should aim at quality improvement, further internationalisation as well as interdisciplinary collaboration. In light of the important role of science in the societal discourse, science is also challenged to communicate its findings to society and at the same time to guarantee that the findings were produced under compliance with basic ethical rules. Finding consensus regarding these rules appears for that reason to be appropriate and in the future should be the result of an in-depth ethical discussion in the sciences.” (BMWF 2008b:7, translation BW)

Critical reflection as well as the problematisation of societal demands and needs is a remarkable definition of the task for the social sciences and the humanities. It is noteworthy for its lack of instrumentalism. More conventional is however the diagnosed need for science communication and the need for consensus upon ethical rules. Neither is it surprising that explicit linkage of science policy to economic growth is also part of Austrian science policy documents. The term commonly used in the Austrian context to indicate economic orientation of research policy is “knowledge and technology transfer” (BMWF 2008b:7). Ministerial reports mention that until recently Austria did not perform satisfyingly, judged by respective OECD indicators which allegedly measure science-industry collaboration. However, recent improvements are acknowledged. In the following quote it is not difficult to trace that Austria follows the OECD approach. “Experiences in other countries show that those research findings are useful for enterprises which are funded by the public sector, generated at universities and published in well-respected scientific journals.” (BMWF 2008b:8)

Therefore the development of stronger links between science and industry and explicitly integration in national innovation systems are made a priority. The BMWF states: “In this concern businessmen-thinking (‘entrepreneurship’) is decisive” (BMWF 2008b). This is not only an approach already expressed by the OECD, but it shows a discourse that encourages scientists to transform themselves into businessmen. Taken together, the discourses as outlined above can be interpreted as elements of subjectivity processes which stimulate scientists in very specific ways. Scientists

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are encouraged to act responsibly and ethically, they need to act as businessmen and be accountable about their own work, they are urged to an account of their work and the societal utility it entails (preferably in economic terms of innovation, competitiveness, and growth). Furthermore scientists are expected to engage with the public to secure societal acceptance as well as to attract young pupils to start a career in science and technology. I have demonstrated that the main features of these discourses are designed by the OECD and EU and that they are taken on by political actors and implemented in national science policy agendas. It is the task of the next section to examine how these discourses are made effective in scientific practices where they shape the subjectivity of bioscientists and clinicians of bio-medicine.

10.2 G OVERNING

SCIENTISTS

In order to put programmatic guidelines of science policy actors (master discourses) into practice and make them effective on the level of individual action of scientists, concrete measures of implementation are needed. I will therefore scrutinise governing practices used to act upon bioscientists in order to turn them into responsible, ethical, entrepreneurial, accountable and engaged subjects in the outlined sense. There are several measures which can be applied for this purpose. The lynchpin of this set of measures is the introduction of so-called “sectorial research programmes”. The introduction of such programmes proves to be a very effective governing technology for the implementation of science policy goals. In addition, a series of other measures are deployed which develop their full efficacy through their association with or integration in sectorial research programmes. To these additional measures I count in particular the strategic integration of public engagement, measures to encourage the young people to start careers in science and technology, and not least the coupling of ELSA research with the “hard” sciences. Furthermore the European Commission has made great efforts to implement ethical review and enforced an “ethics follow-up and audit” scheme (cf. Cordis).12 Governing through the competitive distribution of resources is a general feature of contemporary changes of the scientific system (Albert 2003, see also Radder 2010 for the commodification of science). Basic budgets of scientific institutions are reduced. In return, more resources are made available via competition with other applicants. For this purpose, it is necessary to justify to the funding body how and what for the requested resources will be used. By these means the steering influence on scientific practices becomes intensified. Against this background, it can be argued

12 Source: http://cordis.europa.eu/fp7/ethics_en.html#ethics_cl; last access 29.9.2011.

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that the initiation of project-based funding has become the central point of intervention for the governing of science. Using specifically designed calls for research grants, allows funding bodies to require applicants to fulfil particular criteria and to act in a certain way. To begin with, I will demonstrate that the goals of the master discourses issued by supranational science policy actors become implemented into national schemes of competitive distribution of research funds. The Austrian Federal Ministry for Science and Research (BMWF) states that it launches research programmes as a key instrument to define programmatic focuses. I quote from the ministerial website: “Development and implementation of sectorial programmes: the division develops research programmes in order to solve issues relevant for society and to combine scientific with educational goals. These strategic focus programmes build on the strength’ and innovation-power as well as on future potentials of Austrian research. They aim at interconnectedness and concentration of research and promotion of innovative research areas and methods. Specific research policy instruments for the promotion of women and the promotion of the forthcoming generation of scientists and the improvement of the dialogue between science and society will be permanently implemented and continuously developed. (BMWF; emphasis original, translation BW)

13

In light of the guiding OECD and EU science policy paradigm the message in the above quoted statement is evident. All main elements of the OECD and EU master discourses are mentioned: innovation, cooperation, promotion of young scientists, women in science and technology and of course dialogue between science and society. Furthermore, ethics in science and science communication are emphasised as well. National science policy makers seek to implement this programmatic approach with concrete measures. The Austrian genome research programme (GEN-AU) provides a prime example that demonstrates how this policy plays out in practice. The goals of this “sectorial programme” are declared as follows: “Networking genomic research. GEN-AU brings together people from science, economy, public relations and politics and thus promotes Austria as a location for research. GEN-AU mainly wants to support the interdisciplinary collaboration between biologists, physicians, physicists, chemists, mathematicians and engineers. Through GEN-AU, science is being promoted and educational as well as health care goals are achieved. The programme also pursues economic

13 Source: http://www.bmwf.gv.at/startseite/forschung/national/proramme_schwerpunkte/ forschungs-programme_ schwerpunkte_ueberblick/, last access 30.9.2011.

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of genomic research and support Austrian scientists in international networks.” (GEN-AU)

The quoted statement draws on the central narratives created by supranational science policy actors (OECD and EU) and declares them to be goals of the Austrian genome research programme (GEN-AU). Through the allocation of resources via projectbased funding organised in “sectorial programmes” such as GEN-AU, allows implementing the aforementioned science policy master discourses. The programme will fund projects in which the applicants argue convincingly how they strive to achieve the programme goals. In such a way, bioscientists are encouraged to define their own tasks along the lines of prevailing science policy discourses. Inscription The design of calls for grant applications is a powerful science policy instrument through which it is possible to act upon scientists and hence to subjectify them in purposeful ways. As applicants of research funds, scientists are encouraged to write themselves into programmatic discourses. Everybody who wants to acquire project resources needs to be able to align his or her own research practice with the issued requirements and to adopt the language of the pre-given master discourses (cf. Lemke 2002). In such a way, science policy demands become inscribed into the action programmes of concrete research projects. For that reason, it is possible to recognise the main narratives of the discourses in the grant proposals and after awarded funding also in project presentations communicated via public relations activities. In a project description on the website of the respective funding agency, one research consortium presents itself by declaring the following: “Epidemiological studies will disclose the medical relevance of our discoveries. In summary, these results will provide important insights into the pathogenesis of metabolic diseases and provide potential drug targets for their treatment. […] To achieve these goals, thirteen research teams from six Austrian universities will constitute the GOLD III consortium. The ‘GOLD approach’ of highly focused research objectives, an excellent scientific track record, and broad methodological expertise has been remarkably successful in the past and will ensure important discoveries with potential for economic exploitation also during the final period of GEN-AU.“ 15

(GEN-AU)

14 Source: http://www.gen-au.at/content_index.jsp?id=76&base=foerdern&lang=en; last access 6.10.2011. 15 Source: http://www.gen-au.at/projekt.jsp?projektId=108&lang=de; last access 6.10.2011.

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The goal of the quoted presentation is evident: research should deliver results which are relevant for application in medical practice. This is equally true – as in the given case – for basic research. In such a way, a connection to the demand for societal utility becomes established and inscribed into the presented project. The observed line of argumentation becomes once more intensified when emphasising that the results of the research project should eventually contribute to drug development. In such a way, the described project promises not only suitable treatment for individual health problems, but at the same time also solutions for public health challenges with the prospect of economic benefits for both business and the health care providing state. The project description draws on discourses which conceptualises economic growth as a solution for societal challenges and aim to stimulate a stronger connection between research and industry (cf. OECD 2011, European Commission 2010a, European Commission 2011a). The quoted example shows quite impressively how the design of sectorial programmes exercises an influence on concrete research agendas. Apart from the stimulation of economic discourses and the attempt to align scientific research more strongly with economic goals there are also other objectives conveyed by the mentioned master discourses. With that, I come to policy measures which can be enhanced in efficacy if initiated in association with sectorial programmes. Associated measures and support activities Funded scientists of the GEN-AU programme are explicitly encouraged to participate in public engagement processes. The programme management has organised a series of events in which scientists were invited to interact with the public (cf. Felt, Fochler et al. 2003b and Bogner 2004, Meili, Hellemann-Grobe et al. 2004). The fact that these public engagement events were organised by the funding provider exercised a soft pressure on the receivers of these funds to participate in these events. Although participation was not mandatory, it can still be argued that it was sufficient that the funding agency asked for participation in order to achieve the desired participation of scientists. The strategic position of the funding provider emphasises the efficacy of such associated measures. Additional evidence for the efficacy of the strategy to implement science policy goals via the distribution of resources is provided by the fact that a number of bioscientific projects joined collaboration with ELSA researchers. This form of co-operation was especially encouraged in the call for grant applications (cf. BMWF 2008a). Bioscientists recognised the strategic advantage to accommodate the request of the funding provider to include dealing with ethical, legal, and social aspects into their proposals. My point is that with their engagement in ELSA collaborations bioscientists did not only endeavour to maximise their own benefit, but with their participation they also took on the objectives of the funding provider and made them effective

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in their research practice. Along these lines, it can be argued that subjectivisation processes are at work, because, through their participation, bioscientists are constitute as subjects of a particular type. Most importantly, they become subjects accountable to the public. Yet, the stimulation to contribute in the desired way comes from the funding provider, who uses its strategic position in order to endow science policy goals with significance and initiate its implementation. The goal to promote the forthcoming generation of scientists was achieved with quite similar means. The Austrian genome research programme has initiated a special scheme for this purpose called “SummerSchool” (GEN-AU).16 This initiative gives high school pupils the opportunity for internships in bioscientific laboratories. The goal of this measure is to get young people excited about starting a career as a researcher of the life sciences. It is not difficult to see that this measure draws on goals prioritised by OECD, EU, and national science policy actors (cf. OECD 2011:68, 70; European Commission 2011b:41; BMWF 2008b). With their participation, grant holders have made it possible that targets of the funding provider can be achieved. Evidently the SummerSchool owes its success to the fact that this scheme was initiated and carried out by the agency that also provides the resources for projects in the area of genome research. Once more I would like to emphasise that the specific organisational form of this measure subjectified bioscientists, namely as agents of a particular educational policy. Bioscientists are turned into subjects who get pupils excited for the life sciences. The initiators of the SummerSchool are well aware of the fact that they ask bioscientists to invest a lot of extra time, as the following statement shows: “Only because scientists are willing to open the doors of their laboratories for the youth, the GEN-AU SummerSchool” can provide access into the daily routine of research every year. The Austrian genome research programme is grateful to the research groups who invest their time into the promotion of the forthcoming generation of scientists.” (GEN-AU, translation BW)

17

This statement demonstrates that the promotion of the biosciences amongst high school pupils is not interpreted as a core task of bioscientists. On the contrary, it is presented as a new and additional task which needs targeted interventions into the scientific system such as the initiation of an internship programme.

16 Source: http://www.gen-au.at/content_index.jsp?id=68&base=vermitteln&lang=de; last access 6.10.2011. 17 Source: http://www.gen-au.at/artikel.jsp?id=896&base=vermitteln&lang=de; last access 6.10.2011.

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The integration of ELSA The introduction of ELSA programmes can be interpreted as a purposeful measure to achieve specific science policy goals. The main objective pursued with ELSA is to stimulate the research area in which it is integrated to perform accountability. It is crucially important to note that the request for accountability is a fundamental intervention into scientific practices (Maasen & Lieven 2006, Nowotny, Scott et al. 2001). This intervention has fundamental implications for the subject engaged in this social field. For that reason, the changes of the scientific system can also be interpreted as subjectivisation practices, since they re-define what it means to be a scientist. ELSA researchers fulfil an important task in this regard, because it is them who ask bioscientists relevant questions and encourage the latter directly to give an account of their professional practices. This is the decisive function exercised with the initiation of an integral ELSA programme. Seen from this point of view, ELSA researchers obtain a key function in the subjectivisation of bioscientists to which they are assigned through the association of bioscientific research with the reflexion of ethical, legal, and social aspects. This measure owes its efficacy to the fact that it is quite difficult for bioscientists to reject the request for accountability. This is even more the case when ELSA research is made an integral part of the research programme that also funds the research of bioscientists. Scientists are no longer merely subjects who possess a particular expertise, but, in addition, they have become receivers of research finding. For that reason, scientists are expected to give an account about their research practice which is sponsored with public funds. In this regard, subjectivisation takes place through a specific form of self-presentation. Scientists answer questions about the economic utility of their work, about its societal consequences, ethical aspects as well as social and ecological risks. However, such accounting does not happen just like that, but it is stimulated by the practice of ELSA research. Consequently it can be argued that ELSA researchers subjectify bioscientists by acting upon them. The programme of ELSA research defines the thematic focus of these subjectivisation processes. In such a way, a definition is brought about what responsibility concretely means in the context of bioscientific research. Not only are bioscientists held responsible for the immediate consequences of their actions (e.g. laboratory safety), but responsibility is also defined as an obligation to a) use the provided public resources in such a way that scientific research develops societal benefits and produces an economic return of investment. Furthermore scientists are b) increasingly held responsible for the social (and ecological) consequences of the research they are engaged with. Against this background, it can be argued that scientists are constituted as subjects who demonstrate their responsibility through performing accountability about their research area. It is exactly this point where ELSA research is allocated and why it was made an integral part of bioscientific research programmes.

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Self-technologies The efficacy of the analysed measures requires the active contribution of bioscientists. Only if they are prepared to comply with the requests of science policy actors the programmatic discourses of the latter will be put into practice. In his late works, Foucault repeatedly pointed out that the governing technologies will only then fully function if the subject upon which they are applied contributes actively (cf. Foucault 1997[1983]). Foucault has called this share contributed by the individual “self-technologies” (Foucault 1992[1984]:28-32; Foucault 1990[1984]-a:43). Only if the subject tries to transform itself, the outer interventions develop their full efficacy. Seen from this perspective it becomes apparent that successful research in a scientific system of the described character requires a significant amount of self-transformation. With his analysis Foucault, however, does not aim to enquire whether or not the stimulated self-transformation is “really” voluntary. Rather he is interested in demonstrating the necessity of the active contribution which is required by the subject. Power, this is central for his thinking, is not repressive, but productive (cf. Foucault 1991[1975]:250, Foucault 1998[1976]; Foucault 1982). This conforms with the outlined argument that the role of policy making is not to restrict bioscientific research, but to make it happen (Jasanoff 1995:328). At the same time, the way in which the production of scientific knowledge is carried out should be given a new form. The motivation for self-transformation is created through the initiation of competition (over research funding). Those will prove to be most successful scientists under these circumstances who are the best in inscribing their work into economic discourses and presenting it as beneficial for society. Those will prevail who demonstrate accountability, responsibility and the ability to communicate with the public. The initiation of competition stimulates the self to constitute itself as a subject that is up to the challenge (cf. Bröckling 2000; McNay 2009). Against this background, it can be argued that the presented governing technologies promise advantages for the subject upon they operate (cf. Rose 1999; Miller & Rose 2008). This is precisely how these technologies develop the efficacy of the described programmatic discourses. Those who comply with the stimulated demands will be rewarded and will prevail over those who do not do so. The organisation of the scientific system, that offers less and less resources in the form of basic funding but instead allocates them via competitive calls produces an incentive-system that permanently demands the ability to act upon oneself. This is precisely how subects become activated and encouraged to transform themselves. The most successful competitors are those who are able to prove competences in addition to their qualities as researchers. Scientists will increasingly struggle to obtain resources without demonstrating entrepreneurship, compliance with ethical standards, participation in public engagement and promotion of the forthcoming generation of scientists as well as performing accountability. Presenting oneself in a way beyond the expertise as a researcher and also demonstrating the ability to respond to

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contemporary scientific master discourses (growth, competitiveness, international collaboration, societal beneficence, etc.), is nothing but the effect of a self-constitution as scientist which can be analysed as Foucauldian self-technology. Being a successful scientist under these circumstances requires every single scientist to align his or her professional practice to science policy master discourses. Doing precisely that is the active contribution of the subject.

10.3 C ONCLUSION In light of the presented analysis of subjectivisation processes as outlined in the chapters 7 and 8 the accountability practices and boundary work performances can be interpreted as visible traces of a contemporary change in science and research. When they interview bioscientists about the ethical, legal, and social aspects of their work, ELSA researchers operate in the middle of a field on which struggles over science governance are fought. Science policy makers promote changes which encourage researchers to demonstrate not only scientific excellence but also entrepreneurship, compliance with ethical standards, participation in public engagement and the promotion of forthcoming generations of scientists. Most of all, scientists are urged to give an account of their professional practice. Precisely this is the point where ELSA research is allocated. Because of the specific arrangement which brings bioscientists together with social scientists and their colleagues from the humanities in very specific ways, their encounter during the research interview prompts accountability from the latter. The measure develops its full efficacy because a) it is tied to central science policy discourses, b) it was made a requirement of funding programmes and c) bioscientists constitute themselves as subjects in a way so that they need to stand up for their case in public. The analysis of accountability practices during the research interview with ELSA researchers demonstrates that also resistance can be observed. The various forms of resistance against ELSA researchers can be interpreted as reactions to recent science governance interventions. Thomas Gieryn (1999) has argued with his analysis that boundary work is often performed in order to maintain authority over one’s own field of action. Scientists and especially physicians traditionally plead for self-determination (cf. Weltärztebund 2000, Gottweis 1998, Seifert 2002). Against this background, I interpret the struggles during the research interview as reactions to the current changes in the scientific system. The present analysis offers an interpretation of ELSA research as a science policy intervention aiming to make bioscientists more accountable. I demonstrated how specific measures are deployed in order to intervene into scientific practices. This is especially pursued with the initiation of “sectorial research programmes”, the strategic association of public engagement and the promotion of the forthcoming generation

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of scientists. Not least the integration of ELSA research into bioscientific programmes serves as such an instrument. These measures draw on dominant science policy discourses and at the same time act upon bioscientific actors. Against this background it can be argued in Foucauldian terms that the mentioned practices of acting upon others transform the subject of bioscientific research and constitute it in new ways. They bring about scientists as subjects in new ways, which are not merely constituted through their expertise, but moreover they became subjects who accept responsibility, comply with ethical standards, contribute to the promotion of the young and hold entrepreneurial competences. Not least, the mentioned measures stimulate subjectivisation processes which turn bioscientists into subjects who demonstrate accountability. Those who succeed the most with acting upon themselves in the required form will prevail in the field. For that reason, it can be argued that scientists who constitute themselves in the outlined way and meet the required qualities will eventually also benefit from this subjectivisation. This is exactly what secures the efficacy of the outlined science policy measures. In the next part of this study, I will focus on the analysis of ELSA researchers and scrutinise subjectivisation practices through which they become who they are in the given research context (of the integral coupling with bioscientists). For this purpose, it is necessary to introduce a theoretical perspective. This allows me to situate ELSA research into the interplay of science, policy, and the public.

Part 3: Being a part of it

11 Science, politics, and the public

So far, I have demonstrated how ELSA research is used as an instrument in order to pursue specific science policy goals. ELSA research quite effectively stimulates accountability and ethical subjectivisation in the field of genetic medicine when organised within project-based funding schemes (sectorial programmes) and made an integral part of research projects of the “hard” sciences. Having analysed different accountability practices, I was able to study their embedding within national political cultures. Furthermore, I showed how professionals of genetic medicine respond to ELSA researchers when asked to explain ethical, legal, and social aspects of their work. Reference to the law was used to bring the interview with social scientists to a closure. This was interpreted as resistant behaviour as was the ethical boundary work performed during the research interview. Continuing my analysis of ELSA research as a science governance measure, I proceed from the scrutiny of situated perspectives of bioscientists and physicians of genetic medicine to a more general problematisation. Drawing on STS analysis of science policy processes allows me to address aspects I have not yet discussed. In so doing, I aim to complement the conception of ELSA as an instrument of neoliberal science policy-making with additional analysis of the interplay between science, politics and the public. At first, it is important to bear in mind that bioscientific research and its application in medical practice are not left to themselves in the sense of “laissez faire”. Policy makers do a lot more than merely allow the free flow of the bioscientific forces. Without the state as a provider of funding, there would be no genetic medicine or bioscientific research; at least not in the present form. It is therefore decisive to consider the state as an important actor (Lemke 2007:58), who provides resources and shapes the conditions of the bioscientific field of action. Moreover, it has to be added that different policy makers do not pursue the same goals with their actions. On the contrary, it is essential for their profession to develop competing positions, which they promote in order to prevail over fellow contenders. Political contest has a significant addressee: the public. Ultimately it is the public who politicians

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seek to win over for their propositions. For this reason, I will now discuss the interplay between science, politics, and the public in more detail. Thereby, I regard genetic medicine (both in research and clinical practice) as a political project that needs to be asserted and requires justification in order to become effective. As the controversies over genetic research have demonstrated over the course of the past 40 years, the realisation of this project is by no means automatic. Up until this point I have not addressed the role of ELSA expertise, but merely pointed to the fact that the existence of ELSA and its implementation in bioscientific research programmes would cause specific effects. For this reason, I will discuss the function of knowledge as produced by ELSA research.

11.1 T HE INTERPLAY BETWEEN SCIENCE , POLITICS , AND THE PUBLIC To explain the interplay of science, politics, and the public, I discuss how scientific knowledge is used in order to justify policy propositions before the public eye. This issue is a key question for STS (cf. Irwin 2008:583; Irwin 2006; Jasanoff 2003a; 2005; Hagendijk 2004 and others). The first dimension of this triad is simply the fact that science is the object of political decision making. Decisions are required to determine which research topics should be funded and which ones should not be primarily supported. Policy makers are expected to decide whether it is necessary to prohibit certain types of genetic research and medical applications. They must identify areas that require regulation, and they are urged to declare the criteria of their propositions. These issues capture the first pole of the interplay between science, politics and the public: policy making as shaping and decision making processes of science and technology. From this point of view, science can no longer be conceived as autonomous. Not least because of its dependency on public funding, science is substantially shaped by political decisions. Science is especially exposed to the demand to deliver commercially marketable products, to contribute to the public good or to develop utility of another type (Weingart 1997; earlier this development was discussed as “finalisation of science” cf. Böhme, Van den Daele et al. 1973 and Schäffer 1983; and more recently as “Valorisation” cf. Zwart & Nelis 2009; de Jonge & Louwaars 2009). The definition of such demands can be interpreted as political influence on science and hence as politicisation of science (Weingart 1999a:155); which is first and foremost an economisation. The second pole of the interplay concerns the public sphere. Policy makers must assert their propositions and decisions. This process of assertion is carried out in opposition to political contenders (and certainly begins already amongst political companions). It is necessary to take into consideration that this is a public process. In

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other words, the assertion of political propositions and decisions is grounded in publicly declared arguments. In the end, it is this publicly performed argumentation that allows people to make up their minds about the proposed, and eventually made decisions. Politics can therefore be conceptualised as a process, by which political contenders seek to prevail over others before the public eye (cf. Jasanoff 2005). It is a decisive element (and a continuous challenge) of representative democracy to develop relationships between the public and the processes through which decisions are made and asserted. Another aspect is important. Political decision makers increasingly draw on scientific expertise when they make decisions and also when they explain and assert these decisions in public. Scientific expertise is therefore the third pole of the discussed interplay. The notion scientification of politics is used to refer to the increasing importance of scientific expertise in political decision making (cf. Habermas 1966; Weingart 1999a). However, it is not just that policy makers increasingly consult scientific studies, but the process of scientification of politics comprises also the arrangement of more complex interactions between science and the political sphere. Scientific expertise plays a pivotal role in contemporary democracies, since it is expected to substantiate collective decision making processes. However, scientists cannot provide all the requested knowledge alone. Therefore, social scientists and their colleagues from the humanities are invited to contribute with complementary expertise in order to allow for the deliberation and assessment of ethical, legal and social aspects. Yet, the exact task of science, social science and the humanities is contested. The way in which genetic medicine should be deliberated is in itself part of continuous (re-)negotiations of the relationship between science, politics and the public. There are also different opinions about the time when the deliberation of ethical, legal, and social aspects should best be introduced and how precisely it should be integrated into scientific practice. The importance of knowledge for the practices of governing was already demonstrated by Michel Foucault (Foucault 1998[1976]). His point was, however, not just the simple claim that those who possess knowledge also possess power. If this was so, the function of science would merely consist in the task of “speaking truth to power” as Sheila Jasanoff put it (Jasanoff 2003b:226; see also Irwin 2008:583). It is decisive that the three mentioned spheres: science, politics, and the public are not seen to be independent of one another (such as Luhmann’s analysis of “autopoetic systems” might suggest, cf. Luhmann 1992[1998]). By contrast, it is crucial to scrutinise how these three spheres are mutually intertwined and constitute each another. Relating the above stated to the field of genetic medicine allows me to construct the following argument: The task of policy actors is to make decisions in order to regulate genetic medicine in research and clinical practice. These decisions need to be justified in public and defended against alternative propositions of political oppo-

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nents. Precisely because political decisions require assertion and justification politicians increasingly fall back on scientific expertise (including ELSA research) in order to present their positions in such a way that their explanations mobilise public support and hence maximise political gains. It is clear that policy makers are not merely disengaged guardians of the self-regulating field of science, but they are engaged actors pursuing their own interests. The interplay between science, politics and the public is by no means merely a scholarly perspective. Also politicians observe it, and in fact, they actively tie these connections between the three. Alan Irwin provides us with an instructive example. In his paper, published in 2006, he quotes a speech of the then British prime minister Tony Blair (cf. Blair 2002), which I quote here: “Meanwhile, one of the most evocative statements of social progress through science – with public engagement the route to rebuilding trust and confidence – came with the UK Prime Minister’s April 2002 speech suggestively entitled ‘Science Matters’ (Blair, 2002). Largely a paean to science (‘we stand on the verge of further leaps forward in scientific endeavour and discovery’), the speech stressed three main points. First, that science is ‘vital to our country’s continued future prosperity’. Second, that science is posing ‘hard questions of moral judgement and of practical concern, which, if addressed in the wrong way, can lead to prejudice against science’. Third, ‘the benefits of science will only be exploited through a renewed contract between science and society, based on a proper understanding of what science is trying to achieve.’ The clear implication is that society must understand science better rather than vice versa.” (Irwin 2006:308)

Irwin demonstrates with his analysis a classical interpretation of the interplay between science and politics. The tone is unmistakably instrumental, and the main purpose of such rhetoric is to utilise science for political purposes. Tony Blair declares his position as follows: “We need strong funding and strong public support“ (Blair cited after Irwin 2006:308). This statement by the then British Prime Minister is interesting because it shows quite clearly how Blair aims to mobilise public support for his position. Yet, at the same time, he also tries to assert his propositions by explaining and promoting them in public. In the end, Blair attempts to be a man of action; hence, somebody who “makes” policies. For Blair, it is clear that one has to strengthen public support for science in order to obtain support for science policy measures. In order to shed more light on this strategy, Alan Irwin draws on Sheila Jasanoff’s (2004) notion of the mutual co-production of science and politics. He notes: “As Jasanoff puts this, the concept of co-production highlights ‚the often invisible role of knowledge, expertise, technical practices and material objects in shaping, sustaining, subvert-

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ing or transforming relations of authority’ (2004b:4) One implication is that (in a manner inspired loosely by Foucault—e.g., 1998) power does not reside in particular institutions and social actors but may be co-produced within particular governance practices, sociotechnical interactions, and cognitive assumptions.” (Irwin 2008:589)

What Irwin concludes about Great Britain, he also claims to be true regarding EU policies and refers to a White paper of the European Commission from 2001 to substantiate his point (op. cit.). Irwin and Jasanoff’s contributions are quite instructive for the analysis of ELSA research, since they allow me to theorise the interplay between science, politics, and the public in the field of genetic medicine and the integration of ELSA research as a strategic element. Since the 1990s, a special need to give an account about the social implications of bioscientific research can be observes (Jasanoff 2003b:230). I argue that ELSA research became the prime instrument to satisfy this need. The declared goal of ELSA research is to systematically reflect on ethical, legal, and social aspects and thereby produce knowledge that provides a solid basis for political decisions. In doing so, the introduction of ELSA was intended to allow for a reflexive way of dealing with genetic medicine in research and clinical practice. However, defining what ELSA research is, which agenda it is expected to follow, and what precisely it is supposed to accomplish is not an easy task. In fact, what ELSA is, is not a given but already part of strategic negotiations. This is precisely the reason why it is necessary to analyse the processes through which ELSA research receives its agenda and to investigate who has the power to define it. The first point is that, due to its embedding into the interplay of science, politics and the public, ELSA research is framed in a very specific way. I argue that ELSA research receives its agenda from its specific organisational form as a policy measure. To substantiate my argument, it is necessary to recall that governments of industrialised countries (especially in the USA, Great Britain and the Netherlands, but also, relative to the size of the country, in Austria) have provided huge amounts of public resources for genome research. The magnitude of this investment calls for a political justification and require the mobilisation of political support of the public to be successfully asserted over opposing positions (cf. Cook-Deegan 1994). ELSA researchers became a significant element of this enterprise and was given the assignment to inform legal regulation of genome research (cf. Yesley 2008). The enrolment of social scientists and their colleagues from the humanities implies specific framing. The contribution of ELSA expertise was expected to deliver a sound basis for informed policy decisions and particularly help policy makers to prevent discrimination, enhance social justice and secure compliance with culturally shared ethical norms. This was precisely the assigned task of ELSI research in the USA and ELSA research in Europe. Political decision-making processes were supposed to improve in two ways. Through the consultation of scientific experts, policy

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decisions were expected a) to be made on a better informed basis, and b) to gain authority. With this assignment, ELSA (ELSI) research becomes an essential element for the assertion of (science) policy projects such as the promotion of genome research. ELSA provides the possibility to justify, in a very specific way, investment in bioscientific research and to politically capitalise on this political project. In the following section, I discuss, in more detail, each of the three poles, science, politics, and the public, in order to explain how they are mutually intertwined.

11.2 M AKING

POLICY

Today, the regulation of science is commonly perceived as a genuine political task. The claim that science is the object of political decisions is, therefore, not surprising. Looking back, however, this seemingly simple observation can be seen in a different light. For a long time, science has claimed autonomy for itself. Neither state nor church must determine what is to be taught or studied in the scientific domain. This postulation has a historical background which was very significant during the time of enlightenment. Immanuel Kant had already explained that even the king has to bow his head before reason (cf. Kant 1994[1785]). In his famous essay “What Is Enlightenment” Kant addresses Friedrich the Great to let him know that his government has no authority to intervene into the affairs of pure reasoning, because what is true does not depend on the power of the king. Bruno Latour has observed the exact same argumentation in Socrates’ dispute with Callicles (cf. Latour 1999b:221). This historical note is noteworthy because it raises a question which is still of utmost significance today: how should science be governed? Of course, I do not claim that science was completely autonomous in the past, and that only today it has lost this status. On the contrary, my point is that the problems of autonomy and intervention have always been a highly strategic matter for the relationship between the practices of governing and generating knowledge. Michel Foucault has demonstrated that precisely during periods of enlightenment the determination of the appropriate relationship between knowledge and power has provoked intensive debates (Foucault 1992; see also Foucault 2012[2008]). Today, there are numerous examples of the politisation of science. The collaboration between the state and the life sciences, as it has become prominent since the mid-1970s, is certainly not the only, but nevertheless a particularly compelling case to demonstrate this development (cf. Jasanoff 2005:247). There are three main reasons why science in general and the life sciences in particular have become the object of governance. The first reason is simply the resource intensity of scientific research. Of course, not all research is equally expensive, but the life sciences are certainly amongst the most costly branches of the scientific domain. In short: science is the object of political decisions because it requires funding

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provided by the tax payers. The Human Genome Project (HGP) is an especially instructive example for the necessity of long and intensive negotiations with policy makers in order to eventually succeed with the acquisition of $3 billion USD projected for the realisation of this endeavour (cf. Cook-Deegan 1994). So, what precisely justifies the allocation of financial resources of the mentioned magnitude? The argument typically used to justify respective science policy decisions aims to emphasise the economic benefit of investment in research and development (R&D). Economic growth is very often the argumentative frame of reference for science policy decisions, not only in the context of the life sciences (see chapters 6 and 10). Such argumentation is very often applied, to justify to the public, political decisions to invest in biotechnological and bioscientific research. One day, so the promise goes, these investments in research will result in economic prosperity and will prove the effort made worth it. Sheila Jasanoff explains: “These vignettes dramatize the central role of science and technology in contemporary economic and social development and support sociologists’ claims that we are in transition from the old industrial societies of the nineteenth and twentieth century to a new form of global social organization called ‚knowledge societies’ in this emerging formation, knowledge has become the primary wealth of nations, displacing natural resources, and knowledgeable individuals constitute possibly the most important form of capital.” (Jasanoff 2005:4)

In addition to economic reasons, there are, however, two more issues relevant for developments which contribute to the “politicisation of science”. This leads me to the second reason why science has become the object of political decision making, it is the area commonly referred to by the term “risk”. Science and technology are not just perceived as the engine of growth and welfare. Accidents, catastrophes and pollution have, however, contributed that science and technology are also seen as the cause of problems which can impair the quality of life dramatically, increase inequality, promote violence, threaten cultures, and harm the environment (Bauer 1997[1995], Nelkin 1992; 1995; Jasanoff 2003b:225). The modern biosciences are quite a pronounced example of a technology that is perceived as highly risky. Both, the economic hopes and its possible risks have made the life sciences to the hotspot of political decision making, already since the 1970s. The third set of issues that should be mentioned in this context is the field referred to as “ethics” (often implying social and political aspects as well). Biomedical technologies do not only raise questions concerning their own safety, but also the more fundamental question as to whether they are desirable at all, and if desired, under which pre-conditions they should be applied. Objections against the applications of new biomedical technologies are often framed in terms of their ethical and social effects. Specifically issues of discrimination of particular social groups are raised

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(Cook-Deegan 1994), as well as the right to privacy and the problematisation of new behavioural imperatives promoted by predictive medicine (cf. Lemke 2000; 2004). Against this background, it becomes clear that the problematisation of ethical, legal and social aspects can be seen as an important part of political decision making processes and their (public) justification. The integration of the scrutiny of ethical, legal, and social implications was used to argue why it is justifiable to provide research funds for the life sciences. At least this was exactly the logic behind the USAmerican ELSI programme initiated in the context of the Human Genome Project (Cook-Deegan 1994; McCain 2002; 2003). However, not only does the promotion of the life sciences provide ample evidence to demonstrate that science has become the object of political action, it can also be shown that the mode of science governance has also changed in recent times. The term “governance” has become rather popular during recent years. It is used to express and support the hypothesis that the practices of governing has taken new forms (cf. Kurath 2009). In particular, “governance” stands for the claim that the relationship between science, politics and the public has changed. Accordingly, politicians do not simply govern through law making, but rather, they use a whole set of particular modes of governing. Rhodes for instance observes a trend from “government to governance” (cf. Rhodes 1997) and Gibbons et al. talk about the “new governance of science” (cf. Gibbons, Limoges et al. 1994). Others have suggested the term “soft law” (Kirton & Trebilcock 2004) or “social robustness” (Nowotny, Scott et al. 2001). Last but not least the area of “public engagement” indicates new forms of governing (Irwin 2006). These new forms of governing are broadly discussed in STS literature (cf. Barben 2005; Felt, Fochler et al. 2008; Lengwiler & Simon 2009; Weingart 2001). The basic thesis of the governance discussion can be summarized as follows: The state no longer acts rigorously, but rather moderates and arranges science in such a way that the actors of a field effectively “govern” themselves. It is, however, pertinent to note that the seeming reluctance to intervene does not indicate the absence of political goals. Furthermore, governance does not only refer to a new form of governing, but also to the enrolment of new actors. Regulation is not necessarily designed and enforced in traditional institutions of government, but it is formulated in “… the interfaces between science, politics, industry and civil society“ (Miller & Rose 2008). A number of scholars see this development as an opportunity for democratisation (Kearnes & Wynne 2007; Irwin 2008:595; Edge 1995; Nelkin 1992). Others are, on the contrary, more critical about it, and note that the goal of newly presented developments is often to maintain existing forms of governance. Alan Irwin for instance interprets the “public talk” as a tendency to prolong familiar concepts of “sound science” and scientific expertise (Irwin 2006:316).

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Taking the governance discussion to the analysis of genetic medicine provides a theoretical framework to interpret the introduction of ELSA in tandem with bioscientific research as a governance intervention. Against this background, I have argued that the political measure to equip a research enterprise for the study of the human genome with a programme assigned to study ethical, legal, and social aspects of genome research is not a rigorous government intervention into the biosciences, but rather a form of soft-governing that mainly operates through the production of particular knowledge. The knowledge relevant for this purpose is one that deals with the ethical, legal, and social implications of genome research. In chapter 9, I, however, showed that this form of governance provokes resistance, especially in the form of ethical boundary work. This demonstrates that individuals who are governed in the aforementioned form act reflexively and strategically in relation to such attempts to govern them.

11.3 G ETTING

THE PUBLIC INVOLVED

The most evident role of the public is that of the electorate as an important addressee of policy makers. Yaron Ezrahi frames the public as a “watchful audience” which endows it with considerable political power (cf. Ezrahi 1990). However, the public is not just a mute mass of spectators that occasionally participates in elections. The challenge is to understand the public as an active element in the interplay with science and politics. Sheila Jasanoff criticises that, too often, the active role of citizens is not adequately acknowledged in the analysis of the production and application of scientific knowledge (Jasanoff 2005:247). For this reason, she strives to reintroduce the neglected public to the analysis of science and democracy (Jasanoff 2005:248). Jasanoff’s main criticism is that citizens are not acknowledged to possess any agency. She notes that the public is largely excluded from American science policy literature. Therefore, Jasanoff tries to write the public into this relationship between science and politics. Aiming to conceptualise the public as an active element (i.e. citizens as actors), she notes: “And above all, how can we accommodate a proactive, dynamic, epistemically active conception of the ‘public’: a collective that neither passively takes up nor fearfully rejects all scientific advances, but instead (as real publics are doing all over the world) shaped, crafts, reflects on, writes about, experiments and plays with, tests, and resists science and technology — so as to produce multiple forms of life around the same techno-scientific developments?” (Jasanoff 2005:254-255)

According to Jasanoff it is not only necessary to prove the credibility of science, but also the utility of efforts by the state to initiate and organise processes of knowledge

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production. In her words: “Not only the credibility of science but the utility of the state’s knowledge producing endeavors must repeatedly be brought home to citizens” (Jasanoff 2005:248). Continuing her argument, she states, with regard to the Human Genome Project, “big-ticket, big-science enterprises such as the space station or the Human Genome Project, could not exist without popular support, and steady public funding for basic research demands the kind of political buy-in that the biomedical sciences have enjoyed for the better part of a century in the United States” (Jasanoff 2005:248). Politicians do not make decisions about science and technology without taking into account how they can present their own role as decision-maker to the public in as positive a light as possible. Bill Clinton and Tony Blair gave an instructive example of how politicians try to capitalise on their decisions to fund genome research when they stepped in front of the TV cameras in 2000 to announce to the world the successful sequencing of the human genome. There are not many better opportunities to demonstrate the scientific success as the result of one’s own science policy decision. For the two statesmen, it was exactly such an opportunity on this day. For similar reasons politicians also seek to award prices, because they do not only honour the recipients, but they also exhibit who has provided the resources required to make such accomplishments possible in the first place. A decisive reason for awarding scientific prizes is certainly to require demonstration of science policy successfully implemented by policy makers. There are, however, also other ways in which the public plays an important role, for instance when it rejects technological applications in certain areas. In this regard, Franz Seifert talks about the public as “disturbing factor” (Seifert 2002). Once more acceptance problems regarding modern biotechnology are an example for the significant role of the public. Biotech controversy reached its first peak in the USA as it was sparked by the conference of Asilomar in 1975 (cf. Berg 2008:290; Bud 1995[1993]:234; Seifert 2002:52; Everson 2007:99). In the Austrian context, controversy peaked after the destruction of a field trial of genetically modified starch potatoes near Tulln (see chapter 7 for details). Negative environmental effects and pollution are crucial reasons for acceptance problems in the fields of science and technology. Resistance to science and technology are, however, also an expression of particular economic and political countermodels. The anti-nuclear movement of the 1970s by no means resulted merely from a concern about the risks of this technology, but it can also be interpreted as a criticism of the political establishment during the cold war. Furthermore, the spirit was anti-capitalist, as well. The power of techno-scientific controversies can hardly be underestimated as an important reason for the development of a new policy approach towards the public. Alan Irwin explains how governments have reacted to technoscientific controversies:

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“Transparency and openness are intended to win back members of the public who have grown sceptical of governmental risk-handling. Stung by criticisms of institutional failings and official aloofness, recent initiatives have attempted to draw the public into decision-making and establish a more responsive culture for innovation.” (Irwin 2006:300)

Especially environmental topics were significant incitements for citizen movements and the search for alternatives to and further development of representative democracy and parliamentarism towards “deliberative democracy” (Seifert 2006)). They promoted the demand for deliberative democracy in decision making processes regarding science and technology. Yet, the challenge is to put this demand for participation into practice in order to develop a more constructive engagement of the public. How must science policy be framed in order to prevent the public from becoming a “disturbing factor”, and give them a more positive role than they currently have? There are essentially two answers: 1) public participation and 2) accountability. The point I wish to make, is that precisely because biotechnology and genome research are controversially received, science policy makers pursued a strategy of stronger involvement by the public in order to achieve greater acceptance for science policy decisions and initiatives. Against this backdrop, it can be stated that ELSA research is confronted with an additional assignment: to investigate how the public can be best integrated, which models and methods of engagement lead to the desired outcomes, and how the inclusion of the public becomes (politically) effective (cf. Felt 2003; Felt, Fochler et al. 2003a). A significant part of such efforts are necessary for the organisation of such opportunities on the occasion of which the public can engage and interact with scientists (and sometimes even with policy makers). Public participation During recent years, considerable efforts were made in Europe to enhance engagement of the public with science policy matters (Irwin 2006:299; see also Rip, Misa et al. 1995, Irwin 2008, Edge 1995, Hagendijk & Irwin 2006). Observing this trend, Jasanoff makes note of a “participatory turn” (Jasanoff 2003b:235). Certainly these efforts are not limited to genome research alone. Examples for such attempts to develop a more constructive way of dealing with the public can be found in many countries. In Great Britain, for instance, such efforts were made especially after the BSE crises. In summer 2003, GM-nation was organised as a flagship initiative to explore opportunities for participation in decision making processes (cf. Irwin 2006:308). Denmark already had more experiences with consensus conferences (CC) and the Netherlands with constructive technology assessment (CTA), as similar method applied to the same end. Also in Austria, attempts were made to follow international examples and to integrate the public into policy making regarding the life sciences. As I have already argued, preceding controversies were a decisive stimulus for such

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initiatives (cf. Wieser 2010c; see also chapter 7). Despite the obvious effort to integrate dialogue with the public into mainstream politics, there are also critical aspects about this development (cf. Wynne 2002:472; Kerr 2003:220; Hagendijk 2004:46; Irwin 2006:301-302). Even though the intent to more strongly involve the public has clearly entered political discourse, it is still necessary to note that it is precisely the relationship between science, politics and the public that is the object of strategic negotiations. Such strategic negotiations can be traced in the rhetoric that distinguishes between expert and lay knowledge; for instance that the challenge was how lay people can be informed with scientific expertise (cf. Irwin 2006:315). The main point I wish to make concerns the re-organisation that this new form of governing of the relationship between science, politics, and the public has become the object of strategic struggles. Hence it can be said: The public sphere is enrolled in the interplay between science and politics. Irwin’s analysis helps to understand how the public opinion and political talk are socially constructed to this end (cf. Irwin 2006:304). The bottom line of Irwin’s criticism is that the “participation talk” is specific political rhetoric. He argues: “The point is that sound science has not been replaced or outmoded by the new style of governance. Instead, transparency and openness are presented as a means of convincing sceptical members of the public to trust decision-making processes: ‘Openness and transparency will help satisfy the public about the expertise, objectivity and impartiality of the bodies involved in dealing with environmental problems’ (Royal Commission on Environmental Pollution, 1998: 126).” (Irwin 2006:306)

For Irwin, the hypothesis that more openness would eventually lead to more public trust (into science and politics) is naïve (Irwin 2006:315). He argues that there is no direct link between open deliberation and acceptance. Sheila Jasanoff also contradicts the assumption that the dissemination of factual knowledge can enhance higher acceptance (Jasanoff 2005:253). She criticises this hypothesis as an instrumental goal to engineer acceptance. Similarly, Monika Kurath concludes on the basis of her analysis: “As the social robustness analysis of regulatory and deliberation-oriented governance approach shows, the governance turn might not contribute to the intended increase in responsible and democratic science and technology policies” (Kurath 2009:102). It is important to note that politicians frame the problem in a particular way. It is presented as a crisis of trust between science and the public. What is neglected in this schema is the role of politics. Quite obviously it is a problem for policy makers, when the public protests against biotechnologies, since it was they who decided to invest public resources into respective research programmes (and economic models). Success and failure are two decisive elements of the co-production between science and

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politics. The reasons why policy makers try to claim scientific achievements, such as the sequencing of the human genome, as a result of their own successful science policy efforts, are precisely the same reasons that they consider techno-scientific failures as threatening for their political standing. Alan Irwin observes a lot of talk about public engagement and public dialogue. Yet, he emphasises, this does not prove that public opinions are appreciated or taken seriously. On the contrary, Irwin concludes that the “talk about talk” needs to be interpreted as strategic, largely affirmative communication which has, however, little to do with what happens in practice. This is the reason he uses the phrase “the politics of talk”. It is certainly not a good idea to take for granted what is often declared and promised. Rather, the debate about public dialogue needs to be seen as a strategic debate with particular rhetorical functions and goals (cf. Irwin 2006:316). There is another important aspect observed by Alan Irwin. He criticises the consensus orientation of the “public talk”. The problem with this framing is that it harmonises and overshadows controversies. In such a way, a peculiar image of the public is constructed, as if public opinion were homogenous and consensus were a given. In a publication Alan Irwin wrote together with Mike Michael, they state: “It can also be questioned whether consensus is either achievable or desirable within the complex and shifting conditions of contemporary social life” (Irwin & Michael 2003). Of course, there is no such a thing as THE public opinion. What counts as such are necessarily social construction. Hence, public engagement exercises are just another way in which this actually happens. For this reason, “public opinion” as a product of specific institutional frameworks and a form of social construction (Irwin 2006:317). Public participation is a specific form to organise and govern the relationship between science, politics, and the public. A significant part of ELSA researcher attempts to engage in this interface. They organise deliberative discussions and use these occasions as an opportunity for research (cf. Schicktanz & Naumann 2003; Felt, Fochler et al. 2008). Participatory events are, however, not the only possibility to shape the relationship between science, politics, and the public. Accountability Accountability measures are complementary methods to organise the relationship between science, politics, and the public. Rather than merely targeting specific participatory events (or reacting to eruptive public protests), they operate continuously on a long-term basis. It is again Jasanoff who offers instructive insight into the way in which accountability is used to shape and manage the relationship between science, politics, and the public. “The wider public responsibilities of science, as well as changes in modes of knowledge-making, demand new forms of public justification. Accountability can be defined in different ways,

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There are two main motives why policy makers have an interest to integrate the public more strongly into science and technology policy making. Firstly, politics aims to present itself positively to the public and seeks to obtain public support. The second reason is to be found in techno-scientific controversies as they have occurred in the past. The integration of the public is, however, not just an emergency measure provoked by public protest. It is also a prophylactic measure applied to prevent acceptance problems. To put it more optimistically, the integration of the public is the expression of an effort to seek a more constructive way of dealing with the public. Against this backdrop, I argue that the introduction of ELSA programmes is a way to integrate the public in science policy making and scientific knowledge production. It can also be argued that ELSA research involves taking the concerns of the public seriously. ELSA demonstrates that one is prepared to take on these concerns. Seen from this point of view, ELSA has a demonstrative function; it allows policy makers to show that they take public concerns seriously. This is precisely why the dissemination of ELSA research is crucial. The priority on dissemination also shows the function ELSA is expected to fulfil: it should enhance acceptance achieved through a more open style of communication as it is often suggested by promoters of the public understanding of science (PUS) model (cf. Irwin & Wynne 1996). The claimed need for a public discourse and information can frequently be found since Walter Bodmers Royal Society Report (Bodmer 1985) and was also included into the mission statement of the Human Genome Organisation (HUGO) (McKusick 1989). Of course, the PUS logic can also be traced in the ELSI programme of the HGP. Accountability operates in two ways: 1) on the level of political decision making and 2) on the level of scientific practices. The first dimension means to explain political decisions and to be as transparent as possible why and on the basis of which data decisions were made (see chapter 8; Wieser 2010d). The second context, in which accountability plays an important role, is the research practice itself. What is made an object of research, how is the decision made, and furthermore, how do bioscientists and physicians of genetic medicine deal with ethical, legal, and social aspects of their work? It is ELSA researchers who (are assigned the task of answering and who) answer these questions. The point is that, while doing exactly this, ELSA researchers contribute to holding the field of bioscientific research accountable. My argument is that, it is exactly this feature of ELSA research that is its main functions. It is ELSA researchers who make bioscientific research more transparent and accountable. When bioscientists and physicians of genetic medicine answer questions of social scientists during a research interview they simultaneously perform accountability with this act.

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The ELSA arrangement changes how justifications for science policy decisions are articulated, and by whom they are expressed. It is not the government who explains why bioscientific research is awarded large governmental grants, but rather, the arrangement prompts the receivers of these funds to explain why funding of their work is justified and will eventually benefit society. When explaining exactly this, they simultaneously justify science policy decisions initiating and providing the funding in the first place. ELSA researchers become enrolled in this arrangement as those who ask the respective questions. However, in some cases they are ironically also invited by bioscientists and physicians of genetic medicine to help answer these questions convincingly (for instance why genetic medicine is beneficial for society and can hence be valorised).

11.4 G ROUNDING

DECISIONS IN SCIENTIFIC KNOWLEDGE

Scientific expertise plays an important role in policy making. Jürgen Habermas called this process as the “scientification of politics” (Habermas 1966; see also Weingart 1999a). Scientific expertise is expected to help find the most effective solution for a given policy problem. In addition to this function, the integration of scientific knowledge also serves a legitimatory function. Science is used to justify why particular decisions were made. The presentation of scientific expertise is expected to provide convincing arguments that are suitable for winning public support for a given decision. This is precisely the context in which ELSA research operates. Looking back to what the British Wellcome Trust recommended for the introduction of a programme to deal with ethical, legal, and social aspects of the life sciences, leaves no room for doubt that social scientists are assigned the task of providing policy recommendations as part of work. The Wellcome Trust’s main criticism about the USAmerican ELSI programme as integrated in the HGP was that the latter would not have succeeded in producing policy relevant outcomes (Wellcome Trust 1998). Social sciences would be in a much better position than bioethicists to fulfil this desired task – so the argument was. It is quite obvious that the position of the Welcome Trust implies very specific framing of ELSI research and hence what social scientists are expected to achieve in this context. It is furthermore evident that such criticism of the US-American ELSI programme is in itself based on a normative claim: namely that the scrutiny of ethical, legal, and social aspects must eventually result in policy impact. Through this specific framing, a benchmark becomes established, demanding that ELSI research produce outcomes which are effective beyond the academic sphere. Once this framing is accepted it is also possible to assess the US-American ELSI programme as a failure (Yesley 2008).

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Despite the growing tendency to ground political decisions in scientific expertise, it is nevertheless important to consider the fact that scientific knowledge is not unproblematic, and is no longer taken for granted (cf. Jasanoff 2005:249). This is precisely why Sheila Jasanoff emphasises that knowledge suitable as a basis for political decision making requires a set of culturally defined actions in order become accepted as robust and credible. The point is that the public has a decisive function in this assessment of knowledge claims, which brings Jasanoff to her definition of “civic epistemology”. I quote: “There are in any functioning society shared understandings about what credible claims should look like and how they ought to be articulated, represented, and defended – and these understandings vary across well-defined cultural domains such as nation-states. Public reasoning, then, achieves its standing by meeting entrenched cultural expectations about how knowledge should be made authoritative. Science, no less than politics, must conform to these established ways of public knowing in order to gain broad-based support – especially when science helps underwrite significant collective choices. I use the term civic epistemology to refer to these culturally specific, historically and politically grounded, public knowledge-ways.” (Jasanoff 2005:249)

In such a way, Jasanoff highlights that scientific knowledge is being called into question as a basis of political decision making processes. Continuing her argument she goes on to state: “… the task of managing technologies has to go far beyond the model of “speaking truth to power” that once was thought to link knowledge to political action. According to this template, technical input to policy problems has to be developed independently of political influence; the ‘truth’ so generated acts as a constraint, perhaps the most important one, on subsequent exercises of political power“ (Jasanoff 2003b:255). Accidents and catastrophes have significantly contributed to the decay of this model. Especially public protests have called the authority of science into question. For this reason it is inadequate to conceive of scientific knowledge as something that simply exists and needs only be consulted (Irwin & Wynne 1996). On the contrary, science itself is a social process and hence a lot more than the mere selfsufficient production of knowledge. It is therefore necessary to explain what is required in order to constitute knowledge as a basis suitable for socially robust policy making. Once it is accepted that scientific knowledge cannot be taken as something entirely unproblematic, as universal and invariant, it is clear that the processes through which knowledge gains credibility play an important role for collective decision making. From this point of view the public is decisive. It is not merely framed as essentially ignorant, and therefore, necessary to learn the knowledge scientists can offer. Brian Wynne has called this reductionist framing the “deficit model” (cf. Wynne 1991; 1993; see also Ziman 1991). The public is, however, much more than that, it is

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a crucial authority that assesses knowledge claims and awards credibility or withdraws it. This is not just a recent development. Already during enlightenment times, Immanuel Kant has pointed out the inherently public character of scientific knowledge (cf. Kant 1994[1785]). Historically the public experiment was the key instrument to constitute a shared basis of knowledge and experience (cf. Jasanoff 2005:250-251; Shapin & Shaffer 1985). The decisive role of the public is precisely the reason why it is important to inquire how knowledge can become culturally constituted as a basis for collective decision making (cf. Jasanoff 2005:255). Jasanoff elaborates on her concept of “civic epistemology” and goes on to explain: “Civic epistemology refers to the institionalized practices by which members of a given society test and deploy knowledge claims used as a basis for making collective choices. […] I suggest that modern technoscientific cultures have developed tacit knowledge-ways through which they assess the rationality and robustness of claims that seek to order their lives; demonstrations or arguments that fail to meet these tests may be dismissed as illegitimate or irrational. These collective knowledge-ways constitute a culture’s civic epistemology; they are distinctive, systematic, often institutionalized, and articulated through practice rather than in formal rules.” (Jasanoff 2005:255)

Jasanoff’s argument is highly instructive for the analysis of genetic medicine and the promotion of bioscientific research. The policy decision relevant for this matter is the resolution to invest large amounts of public funding into bioscientific research. Policy makers who advance such an endeavour need to justify their position at least in three ways: a) that the investment into bioscientific research is economically rewarding, b) that it will produce valid results, and c) that it will be acceptable to the public. To address the first issue policy makers draw on scientific expertise as provided by economists and international organisations such as the OECD. Even though there is no reason why economic expertise should enjoy more credibility than other forms of scientific knowledge, it is worth noting that, at the time when the large bioscientific research programmes were initiated in North America and Europe, there was little contestation of the economic promises of the life sciences. Only in retrospect, a number of social scientists have analysed the economy of promises and raised some doubts about it (cf. Brown & Kraft 2006; Brown, Kraft et al. 2006). There were, however, a number of disputes about the scientific quality of the expected results. Robert Cook-Deegan gave a detailed account of the contestation of James Watson’s proposal for the HGP. Watson’s scientific expertise was challenged by his scientific peers who sought to win funding for their rival research strategies to map and sequence the human genome (cf. Cook-Deegan 1994). The point is that this contestation was performed in public (in the form of a U.S.-Congress committee). According to Jasanoff this procedure is deeply embedded in the U.S.-American political culture as a means to obtain credibility for the knowledge basis used for policy decisions,

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such as the decision on the funding of the HGP. Watson‘s proposal gained credibility, because he succeeded over his rivals who promoted alternative claims. The remaining challenge for policy makers is to justify to the public the acceptability of (investment in) bioscientific research. This is where ELSA research – or ELSI research as it is called in the United States – comes into the picture. The introduction of ELSI research as an integral part of the HGP is remarkable because it suggests that relevant knowledge would not yet exist, but has to be produced in the first place. Nevertheless, the proposal to do so was a convincing justification and apparently strong enough to allow policy makers to justify the decision to fund bioscientific research (not only in the USA but also in many other countries). Now that ELSI and ELSA research has been integrated, the question remains, how the produced knowledge relates to policy making. Is ELSA (henceforth I also include ELSI if not otherwise specified) research capable to produce knowledge suitable to inform policy making processes in order to regulate genetic medicine and bioscientific research? There is a danger to reproduce the “deficit model” when suggesting that ELSA expertise is sacrosanct once approved by the scientific community of fellow ELSA researchers. Accepting Jasanoff’s arguments, however, seriously requires the scrutiny of the processes by which a knowledge basis suitable to deal with ethical, legal, and social aspects of genetic medicine and bioscientific research is generated. The credibility of ELSA research is established and challenged in many ways. There is of course contestation amongst peers in the form of review processes. In addition, there are countless attempts to engage the public in the production of ELSA knowledge via public deliberation and empirical social-scientific research. Integrating the public in the processes of knowledge production promises to constitute credibility or social robustness. The most controversial aspect is, however, the question how the scrutiny of ethical, legal, and social aspects of genetic medicine and bioscientific research should be best organised. This debate challenges the ways in which ELSA expertise is produced and integrated into both the bioscientific and political domain. The protagonists of this debate are ELSA researchers, bioscientists, physicians of genetic medicine and, of course, policy makers. Against this background, it is clear that what ELSA research is and what it is expected to achieve is not a given, but it is a result of how the actors of the bioscientific network shape it. Consequently, ELSA research is co-produced by those who shape the framework in which it is carried out, those who perform it and those whose work is being studied.

11.5 C ONCLUSION ELSA research operates in the interplay between science, politics and the public and in this context it fulfils an important science governance function. The argument presented in this chapter can be summarised as follows. At first, science is the object of

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political, shaping processes. Genetic medicine in research and clinical practice needs to be regulated. Furthermore, it is important to consider that political decision makers play an important role regarding the funding of bioscientific research. Decisions over regulation and funding of scientific research and clinical practice require political decisions, which need to be justified and asserted before the public eye. It is precisely here where politicians increasingly draw on scientific expertise, when they need to publicly justify these decisions and thereby try to maximise their own political gain. This is where science is used for giving advice in order to assess risks, economic potentials, etc. However, not only knowledge from the “hard” sciences is requested, but also social scientists and their colleagues from the humanities are invited to contribute with their expertise. The latter is especially sought after when ethical, legal, and social aspects are at stake, as well as societal benefits. The term science governance can be used for the analysis of the ways in which ELSA expertise becomes integrated into the political, shaping process of genome research and biomedicine (cf. Maasen & Lieven 2006). Policy makers create arrangements with which they stimulate the social field of genome research in such a way that it governs itself. This should be made possible through the production of a particular type of knowledge, which is made available to the actors in the field (bioscientists and physicians). In this way, politicians can avoid the need to explain their decisions to provide funding for bioscientific research (and how ethical, legal, and social challenges of this field are being dealt with) by delegating this task to those who receive funds. Social scientists and their colleagues from the humanities who work in this context take on the role of those who ask questions, and those who should clarify to the public what these ethical, legal, and social aspects of bioscientific research and their medical applications are all about. Of course, it can be argued that the state still governs. Forms of classical representative democracy can still be found, as well as governing practices, which the state does not simply leave up to self-regulation. Also, in this regard, ELSA research plays a role. ELSA expertise is used as policy advice. It is precisely this function that is often used to assess the efficacy (the impact) of ELSA research. Bioscientists, physicians, geneticists, social scientists and their colleagues form the humanities are integrated into the law making processes and the design of research programmes. Political decisions need to be asserted over rival propositions. Scientists in general, and ELSA researchers in particular, become enrolled in such processes. They are expected to provide a solid knowledge basis on which such decision can be made and justified before the public. Despite the growing importance of scientific knowledge in policy making contexts, it is nevertheless crucial to consider that scientific knowledge is not universally accepted. On the contrary, as Sheila Jasanoff (2005) demonstrated, scientific expertise is often challenged, criticised, doubted, and even rejected by the public. Therefore, it is crucial to understand the processes which allow

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scientific knowledge to achieve credibility and hence to become a suitable basis for collective decision making. In the following chapter, I take the previously discussed interplay between science, politics and the public back to a micro-sociological perspective. I investigate more thoroughly, how social scientists constitute themselves when they carry out ELSA research. ELSA researchers are not just victims of circumstances (i.e. of neoliberal science policy). They pursue their own goals and interests. In other words, ELSA researchers are actors in the field in which they work. I specifically scrutinise how ELSA researchers see their own role in the field of genetic medicine, and how they negotiate it with those they encounter during the research interview. I interpret the processes of self-constitution and negotiation as a way in which the governance of the biosciences shape subjectivisation practices in the field of ELSA research.

12 Constituting oneself as a researcher

Taking a closer look at the framework conditions reveal the complexity of the circumstances under which ELSA research is carried out. ELSA research is by no means merely defined through the object of study, as its programmatic acronym may suggest (cf. Zwart & Nelis 2009). What ELSA research actually is, which agenda it is expected to pursue, and the potential conflict it entails can only be fully understood when taking the history of its emergence into account, as well as the interplay between science, politics and the public. As I have outlined in the previous chapters, ELSA research operates in a contentious field of contrarian processes, which Peter Weingart (1999) has analysed as the “scientification of politics” and the “politicisation of science” (see also Habermas 1966). At the same time, scientific and political actors are urged to be accountable to the public (cf. Jasanoff 2003b). Against the backdrop of these developments, it is important to analyse how ELSA research can be carried out under framework conditions of the organisational integration of the study of ethical, legal, and social aspects in large scale research programmes of the life sciences. I discuss this question in empirical terms and show how practitioners of this field answer it for themselves. How do ELSA researchers develop a self-understanding through which they can integrate their own professional practice into a positive self-conception? In other words, I scrutinise the ways in which ELSA researchers constitute themselves as subjects of research. The solutions ELSA researchers have found for themselves when working under the described circumstances can be systematically described in the form of a typology, which allows me to outline the spectrum of the different roles sought after in ELSA research (cf. Kluge 1999:46). The outlined typology was developed on the basis of an empirical study I carried out between 2009 and 2011 (cf. Wieser 2011e). In the framework of this project, I had the opportunity to visit key institutions of ELSA research in the Netherlands, Great Britain and Denmark which I compared with the ELSA landscape in Austria. Altogether I conducted 47 research interviews

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with ELSA researchers from these four countries. In such a way, I introduce an international perspective and investigate how the study of ethical, legal, and social aspects of genetic medicine is organised and carried out in the chosen countries. It is important to consider that the analysed interview data are essentially verbalised presentations of one’s own person during the research interview, i.e. narrations of experiences, descriptions of one’s own actions in the mentioned research area and characterisations of the relationships to other people with whom one interacts over the course of the research process. I used an interview guideline which I adjusted to the individual ELSA researcher interviewed. For a more detailed description of the sample and the chosen methodology, see chapter 3 of this volume. In a first step, I present my typology in order to map the spectrum of the identified self-presentations of ELSA researchers. I continue to explain which particular targeted group of addressees goes along with a specific process of self-constituting as an ELSA researcher. The developed typology allows me, furthermore, to identify specific models of policy making, which conceptualise how the results of ELSA research are intended to develop societal and political efficacy. I continue my analysis by addressing some important challenges specific to each of the different forms of the process of self-constituting of oneself as a researching subject. In a subsequent step, I make the developed typology more dynamic. I do so by discussing the possibilities of changing one’s own role during the research process. Thereby I focus on the experiences my interviewees made and the difficulties they encountered with such attempts. A significant part of this in-depth analysis was inspired by the discussion of preliminary research findings with peer ELSA researchers. I presented my analysis in all four chosen countries and was able to obtain valuable feedback on this occasion. The feedback particularly benefitted the refinement of the analysis. With my analysis of the process of self-constituting as an ELSA researcher I aim to address not only the individual dimension of ELSA research. In fact, I argue that the analysis of the process of self-constituting as a researcher provides insight into much wider aspects of the governance of the life sciences. Along these lines, I elaborate on the argument that the governing of science brings about different forms of subjectivisation. This does not only concern bioscientists and physicians of genetic medicine, as I have argued in chapter 11, but it equally concerns ELSA researchers who also work under the described science policy structures. Thus, self-constituted roles are never entirely freely chosen, but they are always related to the processes by which human beings act upon ELSA researchers and thereby make them who they are. However, the concrete forms of subjectivisation are neither the exclusive results of pre-given templates leaving no space for individual action; on the contrary (cf. Butler 2004; Roberts 2006). It is therefore important to bring to light what the acting subject contributes in order to make him- or herself to the researcher he or she is in a given context (cf. Foucault 1982; Foucault 1997[1983]; Foucault 1985).

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12.1 T YPOLOGY Based on my interview data, I distinguish four core themes which characterise the ways in which researchers describe their own role in the research process. These themes are: proximity, autonomy, moderation, and standpoint. I found each of these themes to be core elements of narratives about the practice of studying ethical, legal and social aspects of the life sciences. The analytical typology developed on the basis of my empirical data shows some overlap with the categories suggested by Jane Calvert and Paul Martin (Calvert & Martin 2009) who reflected on the engagement of social scientists in research networks on synthetic biology. They distinguish a series of different roles, but mainly focus on “contributors” and “collaborators”. Researchers who construct their role by emphasising proximity to the bioscientists and physicians of genetic medicine whose work they study or sometimes even work with, I also call “collaborators” as suggested by Calvert and Martin. Those who constitute their role in terms of autonomy, I call “scholars”. In addition to Calvert & Martin’s observations, my data also suggest stratification in the way that ELSA researchers deal with normative aspects of their work, and consequently, I identified two more approaches. Researchers who describe their work as a form of moderation, I call “facilitators” and those who make clear that they take a standpoint in what they research, I call “advocates”. Typologies were also suggested by other researchers. Paul Rabinow and Gaymon Bennett have developed their own in relation to ELSI research of synthetic biology (Rabinow & Bennett 2007). As I see it, their proposal is rather programmatic than empirically grounded. Their goal is to propose ways of conducting ELSI research in the future rather than studying what happens in the field here and now. Thomas Bogner and Wofgang Menz (2005[2002]), on the other hand, have also developed a typology based on their own experiences carrying out empirical research. However, they focus more on how social scientists and their expertise are being perceived by those they encounter rather than scrutinising how ELSA researchers constitute themselves as subjects of scientific inquiry. By developing my own typology, I have tried to describe all four identified roles in a positive way, which allows those who work in the ELSA field to identify with their presented self-conception as a researcher. In doing so, I try to understand each of the described roles from the perspective of those who relate to it. This is to avoid negative interpretations or to favour one role over the others. Qualitative inquiry aims to make the viewpoints of the interviewee understood and provide a more comprehensive understanding of their social world (cf. Kezar 2003:398). With that I follow the methodological principle of qualitative social inquiry to understand the investigated issue from the perspective of those being researched (cf. Flick, Kardorff et al. 2000b:14). It is furthermore important to consider that all four research roles meet

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positive responses in their own way and from different groups of actors in the field. I propose to call this “resonance”. Collaboration between ELSA researchers and genome researchers is supported by providers of funding. A scholarly role, on the other hand, is sought after by peers of social and philosophical research communities. Scientists and medics appreciate the facilitators’ role, and finally, advocates can count on resonance amongst those who they share their values with (e. g. sustainable development, global social justice, etc.). Within this framework, it becomes clear that all four different roles address different target groups amongst which they cause resonance. Taking my analysis one step further, I relate my typology to specific modes of policy making. Each of the described roles corresponds with a specific way in which policy processes are being conceptualised. Sometimes ideas became explicit in my interviews; sometimes these ideas were more implicitly expressed. In the latter case, it was my task to offer an interpretation by which the aforementioned roles can be related to a respective conception of policy processes. Figure 4: Roles of ELSA researchers

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Collaborators Framing one’s own role as an ELSA researcher in terms of collaboration means to seek proximity to the field of investigation. Typically in these cases, researchers go to sites where bioscientific research takes place in practice. From this point of view, it is important to establish some form of collaboration in order to develop a working relationship with those who carry out bioscientific research. For collaborators, it is crucial to seek close engagement with the actors that are being studied within the field. Those whose collaboration is sought are also the prime audience for communicating one’s own research findings. The basic assumption of collaborators is that contributions of social scientists and philosophers are most effective, if presented to the actors in the field being studied. Consequently, direct communication is crucial. Scientists as collaborators are not only seen as informants, but also as addressees of ELSA research. One interviewee explains: “These ideas are developed in dialogue with the genomic centres ... So it’s a continuous dialogue with the people, because you want to have an impact on research agendas. And you want to make what you do as relevant and as consequential as possible. And you can only do that – I think – by involving the scientists.”

Collaborators develop research questions in direct relation to the field under investigation. Rather than drawing on disciplinary discourses they generate their research questions based on the practices of genome research. From this perspective, it is essential to follow up on the practices in the field under investigation. Research questions should be relevant to those bioscientists and physicians of genetic medicine whose work is being studied, as the above quoted interviewee emphasises also in the following statement: “Our only commitment to the genomic network is that we want our research to be relevant, so rather than sitting behind your desk and thinking what would be an interesting topic from a philosophical point of view ...”

It is essential for collaborators to present their findings, not just at the end of their research processes, but already during these processes. Die goal is to use preliminary results in order to engage in discussion with those under investigation. This element is understood to be very important, because it is not only a corrective for the research process, but at the same time it is a strategy by which collaborators try to be relevant for those whose professional practices they scrutinise. With this strategy, collaborators try to avoid friction caused by critical findings. Early communication is seen to be the best way to counter this difficulty and to provide opportunities to respond to the presented conclusions, which should ultimately benefit the final analysis. The

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combination of one’s own research and the way in which one deals with the chosen issues needs to be organised in a process that should begin as early as possible. Collaborators often find it necessary to apply an up-stream approach, meaning that social scientists and their colleagues from the humanities need to be integrated into bioscientific research processes as early as possible (cf. Wilsdon & Willis 2004). Otherwise, it is conceived to be very difficult to develop relevant outcomes. Upstream strategies imply ideas related to the way ELSA research becomes effective and to whom it is supposed to deliver relevant results. In short, if I want to be relevant for those whose practices are under investigation, I need to go upstream. However, collaborative research is very labour intensive. The seemingly insightful statement: you have to invest in a relationship proves to be an enormous practical challenge and very difficult (or even overburdening) to achieve under limited resources. The collaborator’s approach can be best understood against the backdrop of the fact that large amounts of public funding were invested in genome research. This creates expectations that these investments will eventually be rewarding (especially economically, but the taken investments should also become beneficial for the solution of societal problems such as health, nutrition, limited resources etc.). However, not only bioscientists and physicians of genetic medicine are confronted with such expectations of giving something back to society, social scientists and their colleagues from the humanities are equally faced with these expectations. The following interviewee makes this clear: Interviewee: “Yeah, well, two points to the two answers. The first answer is that certainly society expects something in return.” Interviewer: “Yeah.” Interviewee: “Return of investments. They think, they hope, they expect that after let’s say nine, ten years of genomics research that there will be societal benefits, erm, economic benefits whatever. That’s of course [coughs] a difficult issue.”

Seen from this point of view, collaboration is already an answer. It is an answer to the question how ELSA research should be designed in order to create maximal societal utility. The postulated assumption is framed economically strongly and oriented towards return-on-investment logic. It is precisely at this point that collaborators choose their point of departure. They start with the efficacy of their own research and aim to maximise it. Collaborators typically claim that one can only achieve efficacy when trying to co-operate with those who work in the life sciences. Hence, collaboration and societal utility belong together. The goal to enfold societal utility is to a large extent initiated (or at least stimulated) through national funding agencies. However, it is also related to the criticism

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of the US-American ELSI-model, claiming that the latter was not policy relevant. For this reason, collaborators emphasise societal utility in the sense of a counter-model to ELSI. What exactly policy relevance is, and how it might look is, however, not always clear. In any case, the bottom line is that policy relevance is an objective that is by no means easy to achieve. The second decisive factor that explains the reason collaboration is perceived to be the most promising role for ELSA researchers can be found in the history of the life sciences. Recalling the collective experience of GMO controversies as they have occurred in many European countries, collaborators refer to the incidents during the 1990s which are presented as negative forms of dealing with science and technology. The GMO controversy is conceived as an antagonistic debate that led to a dead end and did not contribute to a constructive, problem-oriented dialogue. Collaboration is a counter-model to antagonistic controversies and to some extent a response to it. Collaborators strongly disapprove of antagonistic debates. In my interviews, I could observe a strong desire amongst collaborators to overcome the polarised GMO debate of the 1990s and to develop other, more constructive forms of deliberation. Quite often dialog is chosen as a key term used to express the concept of collaboration. Yet, those who talk about dialogue do not want their intentions to be mistaken for promotion of harmonisation, but rather seek to allow conflicts to be dealt with. The way in which ELSA researchers frame their own role does not only concern their self-presentation during the research interview, it also corresponds with a specific policy model. The fact that ELSA research is framed by science policy making is evident to most researchers in the field. However, the way in which this embedding is framed differs a great deal. Presenting oneself as a collaborator who mainly addresses the actors in the field corresponds with a policy model that emphasises selfregulation. It is by making this knowledge available to those who carry out genome research that changes in the actors in the field result. The state does not need to be involved when ethical and social aspects are deliberated, and respective solutions are to be implemented. Scholars Researchers who seek autonomy when studying the wider social and ethical aspects of genomics can be best described as scholars. It is important for them to maintain some form of disengagement from the field. Here, disengagement is understood as not being involved in the interests, stakes and agendas of those who are to be studied. Direct communication can take place, but is rather punctual and not sought after once the data have been collected. Autonomy also means that research questions are usually not negotiated (or jointly developed) with the actors of the field. Instead, research questions are developed against the background of disciplinary discourses (of course they can be relevant for other groups, too). Other than collaborators, scholars perceive

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their own academic peers as their prime audience. They see their work as a contribution to a more general endeavour of knowledge production. The referred knowledge about the social and ethical aspects of genomics is often not framed in utilitarian terms (but sometimes even opposed to that). Their aim is to make a contribution to a more abstract sphere of production of knowledge, rather than to a specific social group who could immediately utilise it. Typically, the social study of genomics is understood as an end in itself and does not need further utilitarian justification. Here is an example of this account: “Again, I treat science as a social world, just as anyone else might treat a gypsy [site] as a social world, or a crime scene, you know? And so I’m interested: how do scientists overcome the ambiguities and uncertainties of everyday practice? And [...] there are these ambiguities [...]. I'm actually fascinated in the arena itself and how they make sense of it, and how we as a society make sense of health, which is through science, and so that’s why I look at science as a social world.”

Scholars develop their research question against the backdrop of academic discourses. Typically they are interested in the life sciences as a specific form of scientific knowledge and consequently in a specific form of knowledge production. The following statement shows this in a very characteristic form: “... but the things that really interest me are about, if you like, forms of knowledge production, and the types of knowledge that’s being produced.”

Many scholars present themselves as STSers. This defines both their role and the way in which they pursue their research. The previously quoted interviewee continues to explain: “... STS gives you a core set of interests and questions (1) that are independent of the science in some senses, and are (1) really (2) the primary intellectual interest of those people, [...], you know, I'm interested in (1) the STS questions.”

Identifying with STS means first and foremost to see science as a sphere that cannot be separated from society. Rather science is conceptualised as a social process, as an inherent and even constitutive element of modern society. This approach was outlined in a programmatic fashion by the Edinburgh School; an approach that aims to empirically demonstrate the socially constructed character of all scientific knowledge (cf. Bloor 1991 [1976], see also Bammé 2009:34). This is why the self-understanding as a scholar goes along with a specific conception of ELSA research which frames this type of inquiry as STS research or respectively as sociology of scientific

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knowledge. The practice of carrying out ELSA research is related to a particular theoretical background. Especially in the UK, this theoretical background is quite often articulated in terms of the already mentioned Edinburgh School. The following interviewee expresses such interest in research questions, in this tradition: Interviewee: “I'm more interested in (1) thinking about the nature of the knowledge translation, [...] I suppose intellectually I'm interested in, are we seeing a change in the regime of knowledge production? Which is [...]” Interviewer: “Changing, er, the regime of knowledge production ...” Interviewee: “So, that's what we flag up at the end of that [... chain], (1) it's very much my thing, you know, is this a broader secular change in the organisation of science.”

Asking about the organisation of science and consequently how the practice of knowledge production has changed, very evidently shows an interest in scholarly discourse grounded in Science and Technology Studies (STS). The fact that this approach is quite prominent in the UK is supported by a programmatic report by the Wellcome Trust. In this report, the social sciences were given a crucial role in the scrutiny of ethical, legal, and social aspects of genome research in the UK (Wellcome Trust 1998). ELSA researchers I characterise as scholars primarily try to contribute with their own research to the discussion in their own scientific community. This framing also implies who is understood to be a relevant addressee. First of all scholars address their own scientific community, i. e. they address other STSers and other social scientists, philosophers, historians, etc. Again this is made very clear in the following interview extract. “... to some extent we have to look back to our disciplinary roots, (2) we have to decide what we are, (1) well, I'm a sociologist, (1) erm, (1) and we have to be able to talk to our disciplinary (1) colleagues.”

The quoted interviewee continues his explanations and takes up the cudgels for fellow STSers. In his statement, he expresses the view that the key challenge for STSers is to make clear why their work and the approach taken are relevant. In the following extract, the interviewee refers to a broader community of social scientists. “If there's one [sort of] way in which we have to forge ahead, it's to, to turn [...] to ... keep an eye on, on talking to ourselves, and talking to our own community: medical anthropologists, STS or whatever. But also (2) to quite clearly stand up and say, well, look at [...], our work is also relevant (2) to these, to a broader sociological or anthropological community, (1) we have something interesting to say to these people.”

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Even though one’s own scientific peers are perceived as prime addressees, scholars identify relevant addressees outside their own scientific community as well. In this regard, scholars mention especially (political) decision makers. The challenge is to accordingly demonstrate the relevance of one’s own work to these other addressees. It is not so much the community of life scientists, which scholars have in mind, but rather (political) decision makers. Civil servants working in ministries, members of parliament, board members, etc. are counted to the group of relevant addressees. This basically reflects the view of scholars, how ELSA research is supposed to become policy relevant. Defining one’s own role as an ELSA researcher in terms of a scholar implies the idea of a certain kind of autonomy and disengagement. Scholars present themselves as autonomous in relation to the ways in which they raise research questions and how they come to answer these questions. Autonomy means to be autonomous in relation to partial interests of the life sciences. This means that scholars do not perceive it as their task to improve the life sciences (e. g. in the sense of the promotion of innovation, etc.) or to help justifying it to the public. Scholars see a danger in becoming handmaiden of the life sciences and therefore distance themselves from contributing to the legitimatisation of the life sciences. Autonomy means first and foremost, not to be enrolled in the interests and agendas of those who one strives to study. “The dangers, I think sometimes social scientists have got sucked into doing, (1) you know, handmaiden [to] science or they've ... done (1) bits of work which are about legitimating sort of established things, it's not been critical enough.”

What is framed as being uncritical in this extract, does not only concern the practices of bioscientists and physicians. The point is that the demanded critical approach is also called for one’s own role as a social scientist. This critical attitude, as it is urged in this interview, calls for the scrutiny of the ways in which one contributes to the realisation of the co-construction of the life sciences. For scholars, the possibility of being instrumentalised is a serious concern. Instrumentalisation is a negative point of reference for defining one’s own role as an ELSA researcher. The construction of one’s own role as a scholar can be seen as a reaction to the attempt to enrol social scientists and their colleagues from the humanities in the interests and agendas of other actors. This is where the notion of autonomy gains its significance, namely as it is used to put forward the claim not to be instrumentalised. This point of view also explains the attempts to distance one’s own work from the US-American ELSI-model. The role of the scholar is from this perspective an answer of STSers with SSK-background to the ELSI-model. Most of all it is the ELSI-model from which scholars seek to demarcate, because they criticise that social scientists and their colleagues from the humanities have been instrumentalised to legitimise the human genome project (HGP).

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In Europe, this danger of instrumentalisation is, however, not only identified with developments in the USA (and the HGP), but also the GMO-controversy is crucial in this regard. Many National ELSA programmes can be seen as a reaction to the GMO controversies in these countries. This is certainly true for Austria. As the analysed interviews demonstrate, GMO controversies also played an important role in the Netherlands and the UK. These debates are crucial to understand why these countries have decided to invest in the scrutiny of ethical, legal, and social aspects of the life sciences. Against this backdrop, it is possible to interpret the self-conceptualisation of the scholars as the attempt to overcome a particular framing of the social studies of the life sciences. Scholars in particular perceive the expectation that social research should promote acceptance of bioscientific research as instrumentalisation which they seek to reject. They do so by constructing an autonomy claim regarding their own role in the research process. The following extract highlights the demarcation against instrumental agendas and the constituting of a certain kind of autonomy in the sense of self-determination of one’s own research activities. “No, I don't think so. (1) I think it would be something that is explicitly taking a much more critical and above all reflexive view on what our role is. So, having a much more self-conscious idea, I think the critique I would make of a lot of ELSI work is that (2), and this is I guess where the future-making stuff comes in, so [...] expectations are very important [for me], I would argue that a lot of both bioethical work and social science work (1) is, has been historically until recently (1) very uncritical of its role in making those fields, (1) so it's been absolutely fundamental [the co-production argument ... ELSI-works] help construct these fields, [...], you know, one of the things I guess I'm known for is making the sceptic’s argument about, you know, [...] doesn't have [an...], we have to look to ourselves ... so the way in which we are producing these futures, (1) and once you take that turn, which is essentially a reflexive turn, then you can say, okay, (1) What, [...] say what we want to get out of it, (1) what should our role be, you know, (1) what historically has our role been, erm, what compromises do we [make in there, you know], so, (1) I know those questions have not historically been asked, (1) so I think post-ELSI (1) is (2) an engagement with the same subject matter, but with those questions at the heart (1) at the forefront of the analysis.”

It was already argued that bio-ethicists and social scientists do not relate to the field they strive to study as disengaged outsider, but they became actors themselves (cf. Berger 2010). Exactly this fact is addressed in the following extract. “You're seeing the subjects as separate from your [...], you know, the science society [...] reproduced (1) within disciplinary norms in sociology, in some sense that's not your domain, this is purely the object of study, and, you know, so (2) STS [queers] all that, it exchanges the [...], brings all that into question.”

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Making oneself part of the analysis is a very specific way of reacting to the problem of funding of social inquiry being bound to the expectation to deliver a certain kind of utility. Another reaction to such demands is the strict demarcation against any kind of involvement in contexts of application (of one’s own research). This explains the withdrawal to purely academic research. The following interviewee interprets this as a norm that he identifies with approaches that exclusively focus on criticism. Interviewer: “I must admit, I don't (1) really understand where this (1) getting your hands dirty comes from, what ... er.” Interviewee: “I think there's a tradition of very critical (1) Marxist or feminist or, you know, [and I'm], I've no (1) problems with these labels [...], you know, at all, but (1) I think some people in [these] very (2) erm, [the], particularly [branches of] those traditions (1) would see anything that's engaging with the established social orders help reproduce it.”

The self-constituting expressed in this extract can be seen as an extreme form. It aims to completely extract the role of ELSA researchers from the field under investigation. In contrast to that there are researchers which perceive such autonomy claim to be unrealistic and therefore promote the integration of the analysis of one’s own role as a researcher and consequently make it the object of reflection. Scholars who try to establish some form of autonomy for their work typically conceptualise the state as the most relevant policy actor. Policy processes are perceived in more classical terms of representative democracy and parliamentary. The state is the relevant regulatory actor. Depending on the specific national tradition, committees and boards take on an important intermediary role in the policy making process. It is these intermediaries who are then objectified as the prime addressee of policy relevant outcomes of ELSA research. Scholarly Elsa researchers who seek independence and autonomy do not explicitly make normative statements themselves. Rather they aim to offer expertise that needs to be operationalized in a second step. Policy makers need to draw the conclusions how the expertise of ELSA researchers can be translated into concrete policy decisions. Scholarly Elsa researchers feel much more comfortable with a non-normative language. The ideal is to contribute to academic knowledge production that does not take place in the political domain. Accordingly, knowledge production claims autonomy from the policy world and does not want to be drawn into it. And if scientific expertise is required, scholars make an effort not to take sides. Politicians should make policy decisions. If academic expertise is needed it should speak with an epistemological language and not in a normative one.

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Facilitators In contrast to the scholar and collaborator, a third group of ELSA researchers aims to facilitate deliberation. Neutrality is an important feature of this role. The main task is to organise deliberative spaces in which social actors of all type can come together and express their views on genomics. Facilitators see their role as giving other people voice and encouraging them to interact with other social groups. The exchange of viewpoints and arguments in an environment that allows mutual acceptance and learning is important. The role of the facilitator comprises organisational tasks. Facilitators make sure, that no group dominates and each of the participants has an equal opportunity to speak. Secondly the process should be made available to wider audiences both in the public and political domain. Thirdly, the provision of accurate information is also an important aspect of how facilitators understand their own work. Therefore the prime audience consists of those who directly engage in the process. Typically, lay people – who are conceptualised to represent the public – are involved in such discursive processes and they are brought together with scientists, clinicians or other stakeholders. Beyond the immediate parties involved, there are also other relevant audiences for facilitators of deliberation. Firstly, discursive arrangements organised by facilitators are in some cases explicitly designed to inform policy makers (e.g. consensus conferences). The point here is that views of the public are not only intended to be conveyed to actors of genome research, but also to political decision makers. Secondly, deliberative settings are limited in the number of actual participants. To overcome this limitation, facilitators seek to publicise the results of deliberative events so that a wider public audience can access them. Lay participants are conceptualised as members of “the public at large” and the actual deliberation should therefore be presented to those who are thought to be represented in these discursive settings. The motive of giving voice to stakeholders, interest groups, patients, decision makers etc. and bring them together with people with other perspectives in order to allow for mutual exchange is the central motive for facilitators. Here is one example: “I think, what is possible, is to make people talk to each other and maybe to connect them. Well, there is a kind of linking that takes place and it happens in a different way as it would happen anyway within this field. And – from my point of view – when politics has got anything to do with shaping, then it also has something to do with interaction and dialogue processes in the best sense; beyond power and domination that prevails in politics.”

The same interviewee was asked about the policy relevance of her work. According to her, it is rather modest what can be realistically achieved in this regard. It is characteristic to emphasise the communicative practice as what can actually be achieved. This is where she sees her task as facilitator, to organise and provide opportunities for dialogue. The definition of one’s job as the creation of such communicative

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spaces requires, however, a decision. The decision is to prioritise direct communication in small to medium size groups over other versions of non-interactive forms of public engagement or public relations. One interviewee expresses this approach as follows: “Try and, erm, (1) really bring together, (1) er, senior scientists and policy makers and social scientists, erm, so I guess [...], you can focus on different types, you know, you can focus on public engagement or you could focus on [...], that was very much (1) the aim of that (1) workstream (1) was to try and bring together.”

Public engagement activities are a very important for facilitators. The amount of resources that are invested in this area provide profound evidence of this. Public engagement is seen as a form of dissemination, as an activity by which the public can be informed about certain research areas. Especially bioscientists and physicians of genetic medicine understand the task of ELSA to carry out this form of public engagement. Nevertheless, most interviewees made clear that it was important to them not to fully meet these expectations of what bioscientists and physicians of genetic medicine think that facilitators should do. For their self-understanding and the identification with one’s own role as a facilitator, it was important for the interviewees not to become the handmaiden of bioscientists and physicians of genetic medicine. The task of facilitators is framed in a specific way. It is part of a larger science paradigm in which the life sciences are funded and ELSA research is integrated in order to make sure that these activities are conveyed to the public. This arrangement leads to a specific assignment for facilitators: to make sure that there is “impact”, i. e. the public attention needs to be drawn to scientific research activities. One interviewee explains: “From what I remember, it's only really in the last (1) couple of years since the impact agenda has become (1) something named, that people have really started (1) thinking earlier on in their research or (1) about, (1) well, you know, we've got to show impact, and [all the] people aren't a hundred percent agreed on what that means, we've got to be able to tell a story which shows (1) this (1) is not a waste of money [laughs].”

The quoted facilitator explains how difficult it is to demonstrate effectiveness. According to her, it is most meaningful to exchange views in face-to-face communication and thereby focus on what can be achieved with people who are actually taking part in these interactive processes. In this case, the participating persons are defined as addressees. In the following interview, I asked my interviewee if and how the task of the facilitator should be effective in terms of policy aspects. The interviewee answered:

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“Well, I don't know to what extent it does, but, you know, from what I've (1) experienced of how (1) these things go and (1) how policy works, and that's not massive [laughs], you know, and how I've heard people talking about how it works, (2) erm, I think it's very difficult to (1) directly influence that, erm, [I think], [we're] much more likely to have influence by, (1) you know, influencing (1) how people think about something, and then they may get involved in something that allows them to (1) have some influence [such as], erm, (1) because, I don't know, my feeling is that (1) often in, in policy, you know, (1) someone somewhere has decided how it's going to be, [laughs] and it doesn't really matter what (2) other people say, you know, something, (1) that's not always the case, but, you know, I think that's often the way, (1) and I think there's much more chance of having some influence (1) in (1) practice, first of all, and how people work together and (2) and talk together than, and then that may become something that's taken up, (1) at policy level, rather than, you know, direct (1) to policy, erm, and I think it, you know, it's quite, it's a little bit like, you know, communicating with the media, really, (1) media want news, policy people want, (1) you know, simple actions that they can take and (1) I think a lot of the res..., you know, (institute) research, (1) a lot of it doesn't translate into any kind of a simple action, so it's very (1) difficult to, erm, (1) to have that sort of influence (1) I think.”

The main point of this extract is the expression of the conviction that it is the most promising to influence the practices of people who work together. It is possible to organise such practices. They can be organised by facilitators and is in the scope of what can be shaped by the latter. The media are understood to follow their own laws, i.e. they love controversies or stories about people. What does not fit into this format, does not receive a lot of attention by journalists. This is another reason that explains why direct interaction is understood to be more meaningful that public relation efforts. It is also worth taking a closer look at what is truly meant by impact of ELSA activities. Collaborators typically take the view that it is most important to address those whose professional practices are being studied as part of ELSA research. In other words, ELSA researchers need to address the same bioscientists and clinicians of genetic medicine whose work they study. For collaborators, this is the most effective way how the reflexive knowledge provided by social scientists and their colleagues from the humanities can develop impact. My interviewees repeatedly mentioned that, especially in the scope facilitators’ actions, they observed instrumental expectations. They were referring to the expectation that facilitators (and ELSA researchers in general) should take over the task of carrying out public relations work for bioscientific research. Interviewee: “I've done this year, (1) a public engagement project, and we got the university staff and students involved as (1) facilitators in this project, (1) and before (1) we, (1) before they got involved, we got them to fill in a little questionnaire about what they (1) think public

212 | H OW GENES MATTER engagement is, and it was, you know, a lot of, a lot of their answers to that were really (1) that's really about (1) communicating about, well, science or your research, (1) erm, there was hardly any, there was one ... answer that really said anything about that being (2) at least a two-way process or a chance for whoever it was you're engaging with to (1) influence the thinking of the people doing the public engagement [...], which surprised me, really, I thought, (1) erm, yeah, so that, and I think that is the case generally as well, you know, a lot of people see it as (2) as, you know, communicating research.” Interviewer: “Mhm.” Interviewee: “Yeah. One ... of the comments was, (1) er, public engagement is about communicating about how important your research is [laughs], you know, [and] stuff like that, (1) which isn't what I think it (1) should be about at all [...].”

It is this expectation with which facilitators see themselves confronted. They feel challenged to develop ways in which they want to meet such expectations in their work. This is precisely where my interviewees felt they needed to draw a boundary to demarcate from instrumentalisation. It is characteristic for facilitators to distance themselves from what they perceive as instrumental expectations. In order to do so, facilitators develop a position, which is grounded in neutrality, and frame their job within the provision of communicative and reflexive spaces. “I think within that you're making concessions all the time to other people's agendas, (1) and, I mean, I can't, (1) I ... don't think I go in with any agenda other than, (1) well, it is an agenda, to try and, erm, (1) bring different points of view to something, but that's my thing, but there will be (1) other people there with (2) their different agendas, but [...], you know, there's, there’s usually some negotiation of (1) what that turns into.”

Interpreting these interview extracts, I argue that neutrality is a construction. With a position defined in such a way, facilitators cannot only define their own role, but they can also negotiate the relationship to those they interact with during their work. As the quoted interview extract highlights, it is characteristic for facilitators to insist on neutrality when they feel the danger of instrumentalisation. This is precisely how neutrality is actually created in specific social situations. In the following extract, neutrality is used as a construction in order to fend off instrumentalisation. The quoted interviewee explains how she makes sure not to be used as a handmaiden. She resists against this attempt by insisting on her neutral position. “That means you approach people who you already are in contact with and who you think they can open doors. And then later it turns out over the course of the project they may be more controversial than you have thought they are and this leads – well, we have had this problem

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indeed, that we needed to persuade them [geneticists] and often when they [colleagues of the interviewee] did that, they realised that they had to insist on their neutral position very much, had to make clear that they would not let any group to instrumentalise them within this entire network.”

The way in which neutrality is constructed, is similar to the way scholars construct autonomy. Once again, neutrality is presented as a requirement for specific dialogue procedures. “Yes, and I mean, with this [...] conversations, it is part of the training. You need to take on a kind of disengaged, but yet emphatic approach. But you don’t take sides against someone and this is part of the whole setting.”

As framed in this extract, the neutral position is also methodologically justified as a conceptual form of how social scientists and their colleagues from the humanities enter discussions and reflexive deliberation. Facilitators have a lot of administrative tasks. Often facilitators obtain their assignment top-down. This is usually the case in the context of research consortia or through funding bodies. What facilitators do in such work arrangements is organised as part of their job. This situation implies a number of difficulties. These difficulties especially arise when facilitators try to act as researchers as well and strive to use their job as an opportunity to carry out ELSA research in the context of their work as facilitators. The most striking aspect of such attempts is the enormous time effort necessary in order to being able to carry out empirical research under the described circumstances. Facilitation is often seen as a door opener to obtain access to the field under investigation. However, the entrance ticket is sometimes rather costly. The following interviewee explains: Interviewee: “I am now in the position where I am (1) writing articles, erm, (1) based on my empirical research activities that do tie in, some of the publications anyway tie in with (1) the work that I've been doing at (institution), but it's tricky to find the time to do that, you know, it's a sort of, it's a fashionable [...], in a sense here we are sort of administrators, erm, you know, obviously you, you know, you have an interest in the content and, erm, (1) er, but really a lot of your time is spent doing (1) logistical (1) work or thinking about how you can ... frame an event to bring in certain people or what kinds of, you know, activities you might do that will help to ... kind of create interdisciplinary bridges and things like that, so yeah, I think it is an issue, erm, a lot of the ... research fellows in (institution) have very quick turnovers, (1) you know, they've been here, they were here for a year or 18 months or two years and then they're gone again.” Interviewer: “And is that related to that, or ...?”

214 | H OW GENES MATTER Interviewee: “In part, because it's not clear what the research ..., what the career trajectory is from a position like this.”

The quoted extract shows very clearly that the role of facilitators can become quite precarious when aiming at an academic career. Having a job as a facilitator implies a certain competitive disadvantage in comparison to those who do not need to deal with as many organisational matters. The fact that there is very little time left for publications highlights the aforementioned problem adequately. “But if you're here and want to be doing research and getting publications out swiftly, erm, (1) it's maybe not clear exactly, I mean, you gain certain things out of it, you can help to build up networks and things like that that might be useful to your research later on, erm, but it's not (1) particularly beneficial for an academic career in (country) on the long run I don't think, it hasn't harmed, you know, I don't think it's harmed (1) any of the people who've come through, but nobody has stayed for very long.”

It is described as a very demanding double existence, trying to be productive as a researcher in the social sciences or the humanities, in addition to one’s job as a facilitator. Later in this chapter, I will analyse in greater detail the implications of the attempts to change one’s own role. For the time being, I merely note that for facilitators it is necessary to live a hybrid existence if they want to be an academic, especially when carrying out empirical ELSA research. Facilitators have a different mode of policy making in mind than ELSA researchers who constitute themselves as scholars or collaborators. The concern of facilitators is to broaden the policy process itself. The way in which this should be done is by the involvement of a broader set of actors most prominently the public. In other words, facilitators aspire to a deliberative policy model. New forms of governance are sought, and participation should be a core element of these forms. Aiming at societal deliberation of genomics, facilitators believe that more voices need to be heard. The deliberative ideal conceptualises the public as a relevant political actor. However, the public is not an organised actor, and it should not consist of interest groups with specific stakes. Rather, political decisions are still to be made in parliament. The broader deliberation is mainly meant to inform governmental policy processes and feedback deliberative processes back to society. There are also nuances of this approach in which facilitators seek to disseminate (scientific) knowledge, most often to the public, but also to specific groups and stakeholders. Advocates A fourth role can be distinguished from the former three. Some ELSA researchers take a stand. Their standpoints are typically related to a certain set of normative positions. For this reason, I call them advocates. Advocates presuppose power relations

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and typically aim to represent the needs of those who are seen to be less powerful in the context of scrutiny. For example, advocates try to carry out their work in the interests of women when studying reproductive medicine or they aim to represent the standpoint of patients in clinical settings. Another set of normative claims is typically related to environmental concerns and aims to promote sustainability. It is furthermore characteristic for advocates to promote social change. Advocates see their work as a contribution to that. The desired change is related to the normative positions they hold. For advocates, the relevant audience is comprised of “change agents”. These could be, for example, advocacy groups or civil society in a broader sense. It is important that knowledge produced serve those who want to bring about social change (and share similar normative claims). Practice and practical outcomes of research are desired by this group; scholarly insight and academic analysis alone are not enough from this point of view. Advocates develop their research questions in relation to societal problems. It is important to note that these issues arise outside of academic contexts. For advocates, it is characteristic to identify with the needs and interests of certain groups of society. The most common feature of the groups typically chosen by advocates is that they are constituted by people who are in some way or another affected by bioscientific or medical developments (e. g. pregnant women, disabled people, immigrants, etc.). These groups are perceived in their embedding into power relations. Against the backdrop of this perspective, advocates try to empower these groups and aim to balance the observed power relations. The research topic choice is characteristically related to a specific concern and, therefore, not interchangeable with other issues. This distinguishes advocates form scholars, who do not foreground the particular field under investigation quite as much as the former. Scholars can study many different cases in order to be able to analyse modes of scientific knowledge production. Advocates, by contrast, develop their research interest based on concrete issues. It is therefore important for them that their work eventually benefits the persons who are conceived to be affected by the bioscientific and medical developments. Here is one example: “Well, somehow yes. If information is needed for some changes of the law or so, that is also taken into consideration of course. Because it shows the reality of life of those professional groups and of the patients, but also information for women, for those who would like to have a baby later on that they are being made aware that it might not always go according to the plan like they think it would. Well, even with IVF not everything is possible after a certain age, so that somehow, I would wish for, that it isn’t just passed on to the scientists or that not only scientists read it, who deal with that issue anyway, but also people for who it could also be useful.”

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Statements like this demonstrate the differences of advocates to ELSA researchers I have called scholars. According to advocates, ELSA research needs to develop some benefit outside of academic sphere. As the interviewee explains in the quoted extract, it is her objective to make the experiences of women also available to others in similar circumstances. In the quoted case, the interviewee aims at a development that allows the shaping of achievements of biomedicine as user appropriate as possible. The previously quoted extract also shows that advocates are absolutely against modern biomedicine, but their concern can, for instance, focus on user appropriate shaping of medical services. The already quoted interviewee studies in-vitro fertilisation (IVF) and pre-implantation genetic diagnosis (PGD). She explains that, from her point of view, there is a great need to inform women about these technologies. She does not reject the mentioned technologies, but rather identifies a need to offer these services in better quality and in a more egalitarian way. Interviewee: “I think, the whole thing with the [PGD tourism] would be obsolete somehow if you could do that here, too. It would improve the situation of the patients who are burdened anyway. And because a lot of them pay it from their private pocket. Because it is simply to the best of the patients. And I think this should be the priority that they don’t need to travel so far.” Interviewer: “O.k., yes.” Interviewee: “And if something is medically possible and it is something good, well, why then it should not be allowed for us?”

The patients’ benefit is crucially important to this interviewee. In the example mentioned in the quoted extract, the interviewee refers to women who have not yet successfully conceived and who are supposed to benefit from treatments. “I always find it more meaningful when it is somehow useful. If you simply can make use of it and certain, such kind of catalogue of interventions or if you can draw some recommendations, I always find that positive, that it is also useful for somebody, as far as this issue is concerned. Maybe it is different for other issues, but as far as this issue is concerned, I think, that this issue – it is anyway relatively neglected – so I think, if then something is done for this issue, then there should also be some benefit for the women, for patients, for health policy, for information of women if you like, for the work of gynaecologists.”

Advocates see their own work grounded in a particular value basis which for them constitutes both a point of departure and goal perspective of their work. In the following extract, The interviewee feels an obligation to the needs of patients and also

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expresses her values. With her work she tries to point out these needs. The following extract is a characteristic example: “I mean, I already mentioned that. As I said earlier, that also many of my interviewees have addressed the fact that a lot of the money very much goes to one direction and little to other areas. From this point of view it is indeed judgemental when I say after my interviews in a lecture – what I have already done a number of times, and I am committed to that – that I say for instance: it would be recommendable to consider indeed, allocating at least a fraction of the money to other areas. In light of the fact that after so many years still no break-through has been achieved – which doesn’t mean that there couldn’t be one some time and they find something o.k.: now we actually found the genes and now we found the gene-environment-interaction and now we know exactly the cause of [the] disease. But until then, to put their head on the block so to speak, and let them perish more or less in agony in horrible nursing homes, I consider that to be wrong indeed, against the backdrop of my experiences in this field. And then I would, or I recommend indeed, I have done so already more than once.”

The extract shows very clearly how this interviewee feels obliged to the needs of dementia patients. It is her concern that the resources used benefit those affected by dementia and not just those who carry out research this disease. This concern constitutes her advocacy. Another example for a different value orientation is one that focusses on sustainable development. The following interviewee is a researcher who explains that her concern is to contribute with her research to the promotion of sustainability. In her project she studies whether bioscientists do actually comply with this goal or if they simply utilise sustainability strategically for their own benefit (to option funding). “Ecogenomics is a new kind of technology, which claims to be based on a nature-friendly approach. And, er, the idea is that, erm, it tries to copy processes in nature and by doing so, it will be able to contribute to the development of sustainable technologies. That is basically the idea, but there is a huge gap about what is claimed about ecogenomics and what is actually performed under the label. So if you for example ask experts in the field what ecogenomics is, they all give different kinds of answers. And because their answers are so different, it is also very ... the sustainability claim has become very problematic. So I am trying to find out what ecogenomics actually is, how the different definitions relate to each other, and if ecogenomics can really contribute to a more nature-friendly, yeah, world, maybe.”

The interviewee explains that her motivation is to make a contribution to sustainable development. She constitutes herself as an advocate and makes her value orientation repeatedly transparent during the interview. She wants to promote sustainability. She criticises that bioscientists often use sustainability just for the sake of strategic goals.

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Against the background of her value orientation, it becomes apparent why this interviewee interprets the identified strategic behaviours (of her clientele) to be problematic. Her problem is a result of her perspective on sustainable development as an advocate. She explains this fact in the following way: “Yeah, yeah. For me the morality has to do again with the claims versus practice. But also another moral question has to do with the fact that, erm, erm the claim is made that, erm, as ecogenomics tries to imitate natural processes, that it will lead to sustainable technologies and practices. So there ... many experts make the link between imitating nature and nature-friendly technologies. And then I would ... for me as a philosopher, it’s then interesting to ask, does imitating nature automatically mean that the practices you develop, that they are naturefriendly? So, that’s a moral question, that’s the context of this research that would be a moral question: the link between, erm, imitating nature and nature-friendliness; and to ask about that.”

The interviewee questions if imitation of nature will lead automatically to positive environmental effects. She also criticises the reductionism of the analogy. Over the course of the conversation her position takes shape. She continues to explain: Interviewer: “Is it - I need to ask - is it that you feel that sometimes they are cheating? Or that they’re dishonest?” Interviewee: “Oh yeah! [laughs] Yeah, yeah.” Interviewer: “And they are aware of it?” Interviewee: “Yeah, and that’s also why I sometimes prefer to approach them without such a recorder, because then they are much more open to me. And they also are very honest about the fact that they are cheating. [laughs] Yeah, that is something I have to say: they are very honest about it. They tell me, that, er, that it’s a common thing for scientists. [laughs] Yeah.”

The interviewee points out that the situation she has observed results from the way in which research funding programmes are being designed and launched. Therefore she interprets her observations as the result of a specific science policy. This is exactly where her criticism starts. Furthermore, it leads to a self-critical statement. She notes that colleagues of hers hold the view that the entire discourse is just talk and does not change anything. The interviewee does not frame this position as her own view, but rather as the opinion of somebody else, who doubts the efficacy of such research. The externalisation allows her to mention critical aspects of her own work. The articulated criticism concerns a specific science policy agenda. She carefully voices doubts that it is all simply “nice words”, and will not produce any substantial contribution to more sustainable development.

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Interviewee: “Mmh, it’s difficult. But it’s something, erm, that I talk sometimes about with fellow PhD students, because this is something which many of them sense, and ...” Interviewer: “They sense what?” Interviewee: “Yeah, the fact that all kinds of beautiful words are used but that what is actually done is sometimes different. Erm, yeah, the only thing, I could think of is that maybe we can write something together or approach people together, the (funding institution) perhaps. So that we really have to bundle our forces, join forces and then we can do something. But ... yeah I wouldn’t know something in a very ... I can’t think of something in a very practical way.”

Just telling nice stories is not enough for the quoted interviewee. Such concern of one’s own work is characteristic for those ELSA researchers I call advocates. The negative reference point for researchers who constitute themselves in such a way is research that does not develop any relevance beyond the academic sphere and is neither useful nor effective (which means that the status quo remains unchanged). Advocates understand the role of non-governmental actors to make crucial inputs into policy making. Rather than organising deliberative settings social movements and already existing groups in society are seen to be important. They try not so much to bring the public at large to the table, but see NGO’s, patient groups and social movements as central political actors. Therefore they need to be addressed, they need to be consulted and integrated in processes that aim to bring about social change. The ideal that advocates aspire to is a civil-society. The civil society in mind consists of individuals and groups who actively contribute to social life and its organisation. Negotiations are carried out amongst people in non-governmental organisations. In such a way an active civil society also influences governmental policies. But advocates see the dynamics initiated by social movements to be the most important driving force of society and social change.

12.2 C HALLENGES To further discuss the results of my analysis, I address some of the challenges related to the respective self-conceptions. Thereby I loosely draw on Paul Rabinow and Gaymon Bennett (2007) who have proposed this structure in their work on “post ELSI” approaches (but constructed their typology in a different way). I argue that each of the presented roles holds a set of starting assumptions. Some mobilise a) common spirits and mutual benefits, others seek b) to maintain a space for oneself as researcher. Some presume c) that the key task is the provision of opportunities to participate and others take d) social change as a starting point. Related to this starting assumptions there are specific challenges to each of the four identified approaches.

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In outlining these specific challenges, I emphasise that there is no one best way, but each of them has its own specific strengths and weaknesses. Collaborators A collaborative approach in researching the wider social and ethical aspects of genome research draws on a “common ground” as an ideal. In doing so, the assumption is made that all relevant actors in the field are in fact members of the same community and enjoy the same opportunities to participate. In other words, the possibility that one can establish a common ground, on the basis of which collaborative research can be carried out, is presupposed. The obvious challenge for this approach is a situation where a common ground cannot be established or utilised as a starting point. Especially, it is not clear what will happen to those who do not belong to the imagined community? Exclusion is therefore the prime challenge for this approach. The second assumption is that all members of the community have the same ability to participate. The possibility to participate is sufficient so that everybody can join the collaborative endeavour. What is often not addressed in such framings is the question whether the resources to participate are actually equally distributed. In other words, the challenge is to consider and address power relations in the analysis when a collaborative approach is chosen. Scholars The starting assumption for scholarly ELSA researchers draws on autonomy for one’s own academic practice. Obviously the concept of autonomy is problematic in itself and needs further explanation. For ELSA researchers who present themselves as scholars, autonomy means most of all, not to be enrolled in anybody else’s agenda. These agendas are, however, perceived as an important dimension of empirical ELSA research, since they characterise the actors in the field under investigation. Studying the wider social and ethical aspects of genomics therefore needs to be aware of these agendas and means in fact making them explicit through scholarly analysis. In order to do so ELSA researchers are required to maintain equidistance to all interests and agendas identified. The main challenge for an approach that seeks autonomy for one’s own position as a researcher is consequently the relationship to the actors in the field. The circumstances in which social scientists and their colleagues from the humanities carry out ELSA research today can no longer claim a disengaged position (even though this may be a desired conception of their own role). It is clear that ELSA researchers have become actors in the field they strive to study. For this reason, they can no longer claim the position of a disengaged observer, but they need to negotiate their own place in the research process. This necessity is clearly a challenge for an approach that seeks for autonomy, because it aspires to an ideal that is no longer possible. The challenges related to this approach are not only conceptual, but they materialise in

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the research process when researchers are asked to declare their own role in the field. It is an obligatory part of all empirical research processes to explain to those who are studied who one is, what the purpose of one’s own study is and who provided the money for it. Anybody who needs to declare oneself in such a way is already in the middle of complex negotiations of one’s own status of an actor in the field under investigation. Facilitators Also facilitators work on the basis of an assumption. In their case, the assumption is made that the main problem is to provide the opportunity for public participation or to provide information ready to be collected by those who are seen to be in need of it. If the opportunity is provided, meaningful participation will follow almost automatically. Or, in a slightly different version the assumption is that if information is provided, public understanding and acceptance will be the consequential outcome. The assumption is a specific problem framing of what is needed and how a solution to this problem should look like. Whether the attempt to engage the public is grounded in what Brian Wynne has called the “deficit model” or facilitators aim to overcome precisely that, the main challenge of public engagement is to make its outcomes relevant. Participation in deliberative processes alone does not necessarily lead to policy relevant action. Often public participation fulfils a rather symbolic function and its outcomes are simply ignored. Of course there are examples where public participation has played a very constructive contribution, but not all efforts do succeeded in this way (Austria provides a number of examples where it has not). The second challenge is uninvited and unwanted forms of participation such as protest, boycott, and sabotage. The ways in which the public participates can be quite destructive and is not always organised as consensus conferences, round tables, citizen juries, etc. Providing the opportunity to engage is certainly not enough. It is a practical, yet challenging task to make participatory processes relevant. Advocates Advocates hold a set of normative assumptions which they use as a starting point for their work as a researcher. In addition, advocates claim that social change is necessary. Consequently their work aims at practical outcomes. Research findings should help to bring about social change. Advocates do not necessarily assume that everybody shares their normative assumptions (clearly there are too many people who do not share them, otherwise social change would not be necessary), but the assumption is that it is legitimate to promote one’s own normative standing and to take it as a starting point for one’s own work. With social change in mind, advocates view themselves as working against mainstream trends. This challenge is arguably the most existential for advocates. Going against the status quo, and often against existing

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power relations, implies that support from mainstream institutions is not easy to obtain. The challenge is simply to find an economic basis for this kind of work. How can one afford to promote social change if this implies change of the institutions that are responsible for the mainstream? It is therefore not coincidence that advocates were in fact the smallest group amongst my interviewees. It is, hence, a misrepresentation that the ELSA field is predominantly populated by researchers following this approach. Quite the contrary is the case.

12.3 D YNAMICS Typologies create a rather static picture and may even suggest that there is no possibility to change or manoeuvre between different types. First of all, it is to say that a typology is an analytical tool (cf. Kluge 1999). It does not “represent” reality in the sense that it describes “real” people. The abstraction from real people allows to contrast certain characteristics from one another and to group them together in different types which can be used to analyse a particular social field (cf. Bohnsack 2002). For instance it can provide further insight into factors that limit or enhance the scope of action for individuals in the investigated field. In my analysis I have not only investigated the spectrum of roles used by ELSA researchers to conceptualise their own work, but also I asked to what extent it is possible to change one’s own role as an ELSA researcher. In doing so, I dynamise the presented typology and link it to a more general discussion, which addresses the question whether a given role as an ELSA researcher is actually subject to individual choice? Even though my empirical data demonstrate that there is indeed room to manoeuvre between ideal-typical self-conceptions, it is important to note that such a possibility to change from one role to another is not evenly distributed. Certain movements are more welcome than others which face more obstacles and difficulties. It is therefore interesting to understand the reasons and circumstances which make role-changing difficult or favourable. In keeping with the theoretical perspective taken in this study, it is important to understand the practice of ELSA research as an element of the bioscientific network. Accordingly, roles of ELSA researchers are not understood as individual choices, in a sense that they are decided by isolated individuals (cf. Roberts 2006). Understanding the possibilities of action of human beings in their socio-cultural context means to appreciate that they constitute themselves in relation to others (cf. Butler 2004). ELSA research is performed in a social context with specific cultural norms. Therefore it is important to apply an analytical approach which frames the role of social scientists and philosophers in the context of ELSA research not just as an individual matter of personal preference. Contrary to that, the different roles of ELSA researchers can be seen as products of dynamic relationships, which are situated in cultural interrelations in time and space (cf. Roberts 2006:99). Promoting some forms and

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discouraging others, the bioscientific network effectively shapes different repertoires of ELSA research. Who we are as researchers in a given social field is, from this point of view, first and foremost the result of actions that are performed rather than pre-given models that are simply chosen and applied. The question whether it is possible to change one’s own role as an ELSA researcher in a given social context exhibit these theoretical considerations in the form of a concrete research practical problem. Based on the developed typology two axes can be drawn in order to describe the relationship between the four different roles of carrying out ELSA research. Scholars and collaborators locate themselves on opposite ends of the axes between proximity and disengagement. Whereas scholars strive to achieve autonomy for their research practices, collaborators seek close engagement with those whose practices they study. The second axes can be drawn between advocates and facilitators. These two roles represent opposite ends of a normative axes. For advocates it is important to relate their work to a specific value orientation. For facilitators on the other hand neutrality and impartiality is a central element of their professional action. I use this systematisation to discuss movements along these two axes. Moving between proximity and disengagement To begin with, I scrutinise movements between roles that seek proximity and direct communication with the actors in the field under investigation on hand and roles which seek a certain amount of disengagement to maintain the actors’ autonomy as researchers as well. During my research, I asked my interviewees whether they give feedback regarding the results of their research, or if they seek other forms of contact after the completion of their projects. According to their accounts, ELSA researchers do so in varying degrees which can be described as movement between the idealtypical poles of the scholar and the collaborator. The concrete form and degree to which they engage with the actors of their research area, depends considerably on the intentions to maintain field access for future research. Aiming at a future-oriented relationship is an important incentive for ELSA researchers to move from the position of a scholarly role towards a collaborative. Such movements can be found in the context of the publication of the research findings. ELSA researchers using ethnographic methods seek trust of those which whom they interact with during their empirical research. Consequently they obtain deeper insight into the daily routines of those they study. Later on, the publication of the analysis of these observations in a given social field can provoke profound irritations of those whose professional practices are being studied. Bioscientists and clinicians of genetic medicine perceive the results of social inquiry in relation to how they might affect their own work. They try to understand if the results of ELSA research will rather benefit or harm them. As it is explained in the following interview extract, there is a considerable potential for resentment. The interviewee mentions a colleague whose publication has caused vehement indignation.

224 | H OW GENES MATTER “She (1) studied the development of cancer genetic research at (institution), and, erm, published her results without (1) informing (1) the medical doctors about (1) the results, (1) and they were very angry because they wanted to (1) co-edit, I don't know what, but, (1) I'm ... not sure if she didn't write about it, (1) but that was also a real ..., that was evaluated by an, an ethical board, that conflict.”

Moving away from a close relationship is certainly possible, even if this movement results in conflicts. The researcher mentioned in the extract can pursue the publication of her research. The problem becomes, however, apparent when this researcher wants to “move back” to the field. The quoted interviewee explains how social scientists are received if their publications have caused irritation. She reports about the difficulties occurring during subsequent research projects which can even face refusal to co-operate. Interviewee: “She, er, studied the development of the, er, scientific-ethical, (1) er, evaluation system in Europe, and, er, was very focused on informed consent and studied the way that informed consent was practised in an oncological clinic in (country).” Interviewer: “Mhm.” Interviewee: “And then she, er, made a really harsh criticism of the oncologists and the way that they (1) minimised risks and maximised benefits and, I mean, er, sold, (1) er, participation, er, in a research project to (1) the, erm, to the (1) really, really, sick people, (1) and she was ... the first hate object in the (national) medical world (1) for several years, and I was often met with the (1) greeting, oh, are you in (institution)?” Interviewer: “Aha. So that is ...” Interviewee: “So they were very vulnerable, (1) because she had really, she did have a point, (1) she was also ridiculed (1) by many sensible people who were simply frightened of being associated with her, (1) so she was a loner, a single (1) figure with a really tragic (1) outcome in a way.”

The quote interviewee explains that the criticism of medical practices has been received as too harsh. Furthermore, the published criticism was not discussed with those being criticised. This led to a situation in which it became nearly impossible for the mentioned researcher to carry on studying medical practices. The way back to the field and the possibility of future co-operation depends on whether or not the actors of this field feel appropriately represented and if the effects of ELSA research are perceived to be beneficial or harmful. Of course, the power of the actors involved

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is also an important factor. In any case it is clear that future encounters will be informed by previous experiences and the anticipation of possible effects. The interviewee mentioned that when meeting bioscientists she was associated with the entirety of all social scientists who are perceived to act in a certain (undesirable) way. Despite the described difficulties in claiming autonomy once one is closely engaged, a movement towards the opposite direction is possible under certain circumstances. For ELSA researchers taking a more distanced approach it is possible to enter the field under investigation. Scholars using empirical methods, of inquiry do this during data collection. It is, however, interesting to note how scholars constitute themselves when doing precisely that. It is characteristic for them to claim a neutral position that is rather oriented towards disciplinary research questions than towards political issues. The central problem for the scholar is to obtain field access. This is the strategic point (i.e. an “obligatory passage point”; cf. Callon 1986) for all those ELSA researchers using empirical methods. In the following extract, the interviewee explains how she solves this problem. She carefully explains her work without foregrounding the political implications of her research project. She explains: “Of course I try to explain first of all: what is the issue for us in a particular project? What are the research questions? Why I would like to interview precisely this person or, why would I like to conduct ethnographic observations? But to say explicitly: ‘And I want to do this, because it is politically relevant.’ I don’t [do that].”

In order to explain the intention of her project and to make it plausible why she is interested in the work of the approached person she draws on a construction which I call “legitimation through the client”. The interviewee explains: “What I actually do is actually that I strongly draw on this [research] programme, yeah. Because, I have indeed thought about this when you have asked the question. Because this is obviously related with it that then I – at least I think – that then I can better position myself, because the research question originates from a natural science context; more or less research funding context. And because then I think, it is perhaps easier to accept for my vis-à-vis, also to accept me as a social scientist. So that’s how it begins. This I quickly establish as a context, as it were.”

Rather than making the sociological relevance of her work explicit this interviewee falls back on a position that allows her to justify her work through the programme framework of the funding provider. The respective institution funds bioscientific research and determines by means of calls for proposals that ELSA research should be a part of the respective programme. The strategy applied by this interviewee in order to obtain access to the desired research field consist in a specific self-constituting as a “social scientist appointed by the government”. It is evident, that the chosen form

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to obtain field access influences how ELSA researchers are being perceived by those they encounter. The goal of the scholar to maintain a certain kind of autonomy is confronted with considerable difficulties where the benefits of ELSA research are not immediately apparent to the actors of the field under investigation. In such a situation scholars can move closer to the actors of the field of their studies to explore shared benefits. If such common ground can be found, ELSA researchers gain space to manoeuvre, and can change their role from a scholarly role to a more collaborative one. Such movements are, however, tied to an implicit loyalty obligation. Once mutual benefit was identified, it is no longer possible to quit a relationship based on such expectations just like that. It is the awareness of the described implications which explain why scholars are often reluctant to seek proximity when negotiation field access. Against this backdrop, the process of self-constituting as an “autonomous” researcher can be interpreted as a strategy which tries to maintain the possibility to publish also critical aspects of the area under investigation. It should be mentioned that it is certainly possible for collaborators to raise critical aspects of the investigated research field. The strategy of collaborators aims, however, at direct feedback addressed to the actors in the field. Interviewed ELSA researchers explain how fruitful such form of engagement can be. There is, however, a potential for conflicts where collaborators communicate to third party, e.g. in the form of academic publications. Movements along the normativity axis Movements along the normativity axes are difficult to realise. Researchers who take a stand and make it visible to others put their possibility at risk to work as a facilitator. Whoever is perceived as an actor with vested interests has no standing and credibility as a neutral mediator. For this reason, facilitators emphasise their impartiality and usually ground their self-constituting in it. This is typically expressed in the following extract. “Yes, and I mean, with these [dialogues], it is part of the training. It is a kind of distant, but still emphatic position you need to take up – but not taking sides. And that’s part of the entire setting.”

There is, however, room to manoeuvre and facilitators can make their values transparent to a certain degree. This is for instance possible, if the respective values are broadly shared in society. Examples for accepted values are solidarity with discriminated social groups and to a certain degree sustainability can also count on broad societal consensus. Movements are welcome, if advocates obtain a more neutral role. In the academic context movement towards neutrality is not only possible, but it is

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positively received and explicitly encouraged. In contrast, drawing on personal values is a lot more problematic. Those who abandon their value orientation or decide not to show it are not sanctioned in the academic environment. As my data demonstrate, it is, however, possible to observe a certain kind of “self-sanctioning”. Advocates struggle with themselves and their personal stance in relation to their own principles when they neglect their own values making them inconceivable to others. Advocates feel obliged to draw a personal boundary. The following extract highlights this aspect. “I can’t remember when it was. But it was 2006, I think, or so must have been. That was in October 2006 or so. In any case, then I gave a lecture about it and [I] spoke about these critical issues of the (national) researchers; carefully anyway [laughs]. At that time, it was those, who I had interviewed. And I got immediately attacked from people from the ministry who had been there. Who had told me this? I said: ‘I don’t say that, because it is anonymised.’ Who had told me this and it wouldn’t be true at all. And then there is the question: whose duty is it when there aren’t any funds, isn’t it, yeah. And you are immediately drawn into a machinery and caught up between two sides. Not, that I don’t, I mean of course, when we as ELSA researchers gather information it is somehow also our task to get involved, but the question is, how do I get myself involved? And I don’t like to be instrumentalised, at least.

The quoted extract is an account of a researcher for who a personal value orientation is an important aspect of her work. She feels committed to the wellbeing of patients. In the extract, however, she first presents her own position as neutral (regarding contentious medical approaches). She goes on to explain how she experienced that critical positions are immediately attributed to one side, which she phrases as being “caught up between two sides”. This is precisely the point where she takes a step back from advocacy and constitutes herself as “neutral” academic. Yet, “getting involved”, i.e. taking a standpoint, remains an important aspect for her. This interviewee takes the role of an advocate when she defines the task of ELSA to get involved. The problem is, however, the precise form of how such involvement takes place. In other words, the problem of this interviewee is to meet her own standards. She feels compelled to define a boundary how far she wants to conform to the demand for impartiality. Her personal boundary is exactly there where she feels she cannot set the agenda of the standpoint herself, but is instead instrumentalised in precisely this regard. The quoted interviewee rejects the enrolment by a party that wants to recruit her as their mouthpiece. With this statement, she claims a neutral position for herself that refuses the enrolment by any group of interest. In order to avoid a situation in which she fears being instrumentalised, the interviewee abandons the position of an advocate and withdraws to a neutral position much closer to what was described as a scholar.

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It is remarkable that it is precisely through this self-constituting as impartial academic (scholar) which allows the rejection of instrumentalisation. Seen from this point of view, the construction of neutrality is essentially a vehicle for the rejection of attempts of interest groups to enrol ELSA researchers. The following extract from the previous interview illustrates this point. “... because in this entire debate – which is so uncertain on a medical level – as a social scientist, I want to keep myself out of that. I see my role much more on the one hand to describe of course, but to go beyond this descriptive level, and of course to analyse, but without taking sides too much.”

The remarkable aspect about this extract is that the interviewee presents herself as a scholar and abandons her self-constituting as an advocate. This is interesting because she constructs her role in terms of neutrality and autonomy. Nevertheless, a complete crossover from the role as an advocate to one of a facilitator could not be identified in the analysed interview data. In fact, persons who can be characterised as advocates conceive such movement as problematic in a sense that they do not want to offer their services to anybody – certainly not to somebody whose values they do not share. It is, however, rather common for advocates to move towards a scholarly, collaborative role as I will explain in the following section. Taming the advocate Advocates often seek to obtain roles similar to scholars or collaborators. Both routes are equally viable. Almost all interviewees who I have conceptualised as advocates presented themselves as “tamed” advocates. This is a reference to a certain academic habitus that materialises in a style of argumentation that is grounded in empirical evidence rather than in values. Advocates who work in academic environments are constantly encouraged to restrain from their value orientation. If advocates start to practice a collaborative role, this can indeed cause conflicts with their own value orientation. One ELSA researcher recalls her experiences with a presentation she has given before a bioscientific audience. Interviewee: “And there, I’ve neatly presented, also in front of medics – it wasn’t necessarily those who I’ve interviewed – but in front of medics, of people who work in the area of biotechnology and so on, presented in front of them or also of people who work in the care area. You always get beaten up there by the respective group [laughs], which feels badly represented in the presentation [laughs]. But that was very interesting, to see also, how they dealt with the presentations. Especially when they also ... At the conferences, with 30, 40 people in the audience who have never thought about the socio-political and political effects of what they do. Well, from this point of view, I have given a lot back to them, but not necessarily to the people who I interviewed; because there was no opportunity. They couldn’t be bothered.

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Interviewer: “O.k., yes.” Interviewee: “And, and ... I also wanted to say that. This is purely private, as it were. For me this is tremendously important, it confirms ... well, what’s the word? Confirm is the wrong word. But when I survive a presentation in such an environment, as it were, for me this is a lot more relevant than speaking at some political science conference, where I could maybe say: it was a good policy analysis that I have conducted, but where the question never comes: how do you want to put that into practice? Well, for me this is ..., well, but that is a personal matter with me.”

Quite evidently this interviewee presents herself as a researcher with a concern. She wants to contribute with her work by providing relevant results, which can be applied in practice. With that, she articulates a changed agenda which she integrates into her lectures. As she explains, she repeatedly encounters conflictual situation because of that. However, she is ready to pay this price if this allows her to stimulate physicians to reflect upon the “socio-political and political effects” their work. Using such a strategy to present her findings to the actors of the field that she researches, she applies a method that is characteristic for researchers, I call collaborators. Yet, at the same time, the quoted extract is a paradigmatic example for the ways in which advocates “tame” themselves. This becomes most evident through the statement by which the interviewee virtually privatises her advocacy. The value orientation, which is the source of her motivation, is – as she puts it – a “personal matter”. In such a way, she verbalises a form of self-disciplining of the advocate that moves her towards the role of a scholar or collaborator. It is certainly possible that advocacy and collaboration coincide with one another. In this regard, the choice of one’s own co-operation partners in the field is decisive. The fact that one shares a similar value orientation (e.g. with NGOs etc.), favours such a movement. Alliances are, however, problematic in relation to third parties to the extent to which they endanger one’s standing as an academic. In the opposite case, if the relationship to the actors in the field is antagonistic, the communication to outsiders entails a significant conflict potential. This is most evident when the results of ELSA research are published in academic journals, by the media, or when they are presented to decision makers in the form of policy advice. There is much less potential for conflict, if advocates obtain a scholarly role. Falling back on neutrality and autonomy is a possibility that enables advocates to work as academics. Advocacy is then “reduced” to the choice of one’s own research topic and the framing of the research questions. The position of neutrality is, from this point of view, generated in situ. A neutral position is created for a specific purpose, and it is expected to open up more possibilities of action for ELSA research in the context of the life sciences.

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Becoming a researcher There is another movement I would like to address. It is the attempt of facilitators to become a researcher; either as a scholar or as a collaborator. The first problem they encounter in such attempts is simply one of lack of time resources. Facilitators are quite occupied with organisational tasks and, therefore, have little time left for scientific activities. Time is especially scarce for publications. The following interviewee explains the aforementioned: Interviewee: “I am now in the position where I am (1) writing articles, erm, (1) based on my empirical research activities that do tie in, some of the publications, anyway tie in with (1) the work that I've been doing (at institution), but it's tricky to find the time to do that, you know, it's a sort of, it's a fashionable [...], in a sense here we are sort of administrators, erm, you know, obviously you, you know, you have an interest in the content and, erm, (1) er, but (1) really a lot of your time is spent doing (1) logistical (1) work or thinking about how you can ... frame an event to bring in certain people or what kinds of, you know, activities you might do that will help to ... kind of create interdisciplinary bridges and things like that, so yeah, I think it is an issue, erm, a lot of the ... research fellows (in institution) have very quick turnovers, (1) you know, they've been here, they were here for a year or 18 months or two years and then they're gone (1) again.” Interviewer: “And is that related to that, or ...?” Interviewee: “In part, because it's not clear what the research ..., what the career trajectory is from a position like this.”

In another interview the interviewee explains that employment as a facilitator does not assume the expectation to produce academic publications. “Yeah, so, erm ..., with my (1) job (at the institution), erm, (1) you know, I did, (1) erm, I published, er, you know, I edited a book with someone, and, you know, I used to do a lot of, (1) you know, conference papers and things, but I didn't do any (1) written publications for journals or anything, (1) and it wasn't, (1) you know, probably wasn't that expected of me, because the direction.”

A second problem concerns the given hierarchies and power relations. Facilitators who attempt to abandon their role experience their relationship to bioscientists and physicians of genetic medicine often as one of unequal parties. The role as facilitators defines their position in the network. It is rather difficult to change such assignments. One interviewee explains:

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“No, but I have had, (1) or, (1) I have had, erm, (2) some uncomfortable experiences with a certain person [laughs] who, (1) erm, you know, I, I was trying to get into, (1) you know, doing some research in ..., er, [in ...] of psychiatric genetics, or at least genetics and mental health, so I went to talk to someone to try and find out about, er, more about what they did and say, I'm interested in this, I'd like to do some research, you know, and see if there's any, (2) if, er, they were willing to, to let me in, and he ... just, his immediate reaction was, erm, what's your agenda, (1) you know, he was very suspicious of what I wanted to do, and that was, I think that was partly because, erm, (1) this was when I was working with (institution), (1) I think that, that's partly to do with (1) politics within (1) (the institution), (1) but I think it was also, (1) you know, (1) him not being very, erm, aware of what a social, not that I would normally call myself a social scientist particularly, but of what someone like me would be doing there, why would I be interested, (1) and that [...], and ... that was really uncomfortable, because I just thought, oh, he, you know, he just, (1) he's not very willing to, to talk to me at all, he thinks that I'm, (1) you know, so that was, that was the worst, (1) erm, (1) experience I've had, but (1) it may have just been because he was a professor, and he thought I should be (1) [laughs] more, I don't know, (2) [...], what's the word, more, (1) perhaps, perhaps he thought it was a bit, (1) you know, some, some people [...] in ... a sort of high position can be a bit offended by (1) a lowly researcher coming to talk to them, you know, maybe he thought I was, (1) I don't know, (1) maybe it was just [bad time].“

This interviewee continues to say: “I think, I think it depends on the person, but I've definitely had, (1) you know, a lot of (1) experience of people, erm, (1) being very dismissive of social science and ethics and, (1) erm, things like that, erm, (1) but it's not necessarily (1) done in a sort of, erm, aggressive way, [25 lines omitted] I've had conversations with scientists who say, “well, you know: social science just, you know, just, it relies on science, just follows it around, (1) you know?” And, er: if there wasn't any science, there wouldn't be any social science [laughs] or something like that, you know, it's, (1) erm, (1) or, it's just soft, you know, there's no, where's the, where is the [rigour], it's all just (1) talk ...”

The extracts above demonstrate that it is rather difficult for facilitators to change their role in the bioscientific context and instead try to act as a social scientist or philosopher. This is particularly difficult because in environments populated with people who disregard ELSA and frame it as a “soft” science. Facilitators may even be discouraged from pursuing the social studies of genetic medicine. It is characteristic for facilitators who carry out research alongside their administrative tasks conceptualise their own role as a hybrid. On the one hand, this hybrid role grants them access to a

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field of research, but, on the other hand, it can become rather problematic as the following extract shows. Interviewee: “Well, (1) I mean, that's interesting, ’cause I think it ... does link to the question that ... you raised at the very beginning about what your work is about, you know, is it, there are clear opportunities for engagement with the scientists, right? Lots of meetings, you know, especially if you're based in the same university you can go to seminars, you can have a lot of exchange, but I think there is a bigger question around what's the role, (1) right? Erm.” Interviewer: “And is that ambiguous to you, or you're ...? (2)” Interviewee: “Yes, I think it is, er, yeah, I think it is, I mean, that's why in part I said earlier on that, erm, (2) I can justify my role, say, with this [...] network in a very simple way by taking on some administrative (1) [...], right, so that (1) my role doesn't need to be questioned beyond that (1) [line] is that I have a legitimate reason (1) to be there, (1) right? So ... that's ... sort of an interesting way to, to become involved (1) that does, that leaves my, leaves whatever my own, erm, research interests and questions are (1) open, but they don't have to be (1) justified, erm, in the same way, right, erm, (1) so, so I think it is, I think it is a very ambiguous question, erm, it's one that I have managed to sidestep a little bit, (1) erm, in terms of having to give an answer to it, erm, (2) because of taking on a slightly different role, (1) erm.” Interviewer: “Exactly, yes.” Interviewee: “But you do then have to be careful, right, [...] even within that role, as, you know, well, am I (1) shaping or directing too much what they are doing?”

The role of ELSA researchers can become problematic in situations where one is encouraged to give an account about one’s own research interest. The answer to this question is by no means a simple matter since it is clear that any answer will influence what is being said during the research process. Bioscientists and physicians of genetic medicine act strategically in the research process. This fact is stimulated when the research agenda of ELSA research becomes the object of deliberation during the research process. It is much more favourable for facilitators to make their own practice to the object of reflexion. One interviewee found an opportunity to do so. He explains: “So there was more a public understanding of science kind of event, I would say. We tried to really organize a public debate, but it was, somehow it was difficult to organize it. So that was actually the starting point for (institution) but also for me to start thinking about what do you actually do in these kind of engagement sort of activities?”

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The interviewee continues to note: “But still we were struggling about how do you actually do this, this public debate organizing kind of thing. And that is actually where in all these conversations I had with (colleagues), all these conversations we had about how do you actually do that was the beginning of this research project. Where, in which I am involved in. So they asked me in 2007 if I was interested in trying to make a combination of my work as a programme-maker at (institution) and starting this research project. So to reflect on and try to do some research on these public debates in (institution).”

At first glance, the movement from the role as a scholar or collaborator towards the role of a facilitator is straight forward. There are many examples where academics begin to act as facilitators. Those interviewees with experiences in such areas confirm that the difficulty is rather in returning to academic activities. The issues raised during the interview were for instance: Can I maintain my standing in the social sciences or the humanities? Is it still possible for me to pursue an academic career? Do I obtain more credibility and trust? Can I capitalise on the investment made in the relationship for future collaboration? These problems are less of an issue for established academics. The case is, however, significantly different for researchers working in precarious or short term employments. It is portrayed as an enormous challenge to find the time for academic publications when working as a facilitator. This raises an important issue that concerns the future perspectives of the employment of facilitators. This aspect is not merely an individual problem, but it signifies a much broader systematic problem. What contracts do facilitators actually get offered? How much job security do they enjoy and what career opportunities are available for them? The previously quoted interviewee explains that the job as a facilitator may lead to a dead end for those who seek academic careers. For this reason, it is a science policy issue to shape facilitator jobs since the circumstances under which they work are the result of political decisions. The following extract emphasises this issue: “I mean, I think (1) from, maybe something revealing is that I think that my own (1) work at (institution) has gone more into becoming what a researcher is (1) in a way, erm, [because] it's very difficult, it's very difficult to have some kind of hybrid role, erm, I do do more organising at meetings and workshops than most people do, erm, (1) but over time now the workshops that I'm organising are ones that are (1) linked to my own research interests, where I've got colleagues across the network who are also interested, and we say, okay, you know, we know that there's a growing interest among (1) all three centres (1) in this, you know, but it's also the thing that interests me, erm, rather than building something from the ground up every time, and, you know, so, I think it's very difficult to maintain ... that, you know.”

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Precarious forms of employment highlight problems that go beyond the tasks and career perspectives of individual facilitators. This becomes apparent when asking who can afford to raise critical issues. It is an entirely different situation if criticism can be articulated from an economically secure position. A well-established researcher describes her own standing as follows: “I mean, I have money, I have a position, I can't be fired unless I take money out of the (1) box and, erm, I have a position in society, and (1) I'm economically independent, nobody, I mean, what's the worst that could happen? That I can't get my stuff published or, but (1) I can say what I want and I can normally also (1) be, (1) I mean, I'll become, (1) people will phone me from newspapers and media.”

With this statement, the quoted interviewee addresses the fact that the generation currently trained as academics are not in the described position. This fact is very relevant when considering that a significant share of ELSA research is actually carried out by young researchers who often work on their PhD or post-Doc projects. Research programmes are often conceptualised as the promotion of young scientists, which means that ELSA research is carried out by individuals with very little job security and uncertain future perspectives.

12.4 C ONCLUSIONS Analysing subjectivisation processes, I aim to provide a better understanding of how ELSA researchers become who they are in the context of their professional practice. Inspired by Foucault’s analysis of self-technologies (cf. Foucault 1997[1983]; Foucault 1985), I focus on the ways in which social scientists and their colleagues from the humanities constitute themselves as subjects of ELSA research. Scrutinising the ways in which ELSA researchers define their own role in the context of their work allows me to map the ELSA landscape regarding the different ways in which social scientists and their colleagues from the humanities conceptualise their own research practice when studying social, legal, and ethical aspects of genomics. Having carried out 47 interviews with ELSA researchers in the Netherlands, Great Britain, Denmark and Austria, I identified four main narrative themes by which ELSA researchers explain their work. These narrative themes are: proximity, autonomy, moderation and standpoint. Based on the analysis of these interviews, I developed a typology that distinguishes four different roles: collaborator, scholar, facilitator and advocate. Each of these four ways to constitute oneself as an ELSA researcher corresponds with a specific understanding of how ELSA research should be carried out. Furthermore,

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the ways in which ELSA researchers constitute their own role, go along with a specific understanding of who is intended to be the addressee of one’s own research findings. The latter are expected to contribute to policy processes. Scholars first and foremost try to contribute with their research to their own scientific community and aim to be recognised amongst colleagues. Regarding policy relevance they address policy makers of representative democracy in the sense of parliamentarism (cf. Delpos, Haller et al. 1998). Collaborators mainly address the group of persons whose professional practice they research. In other words, they address bioscientists and medical practitioners. The policy model they follow focusses on self-regulation in the given social field of the life sciences (in research and application). This model is often framed as a neo-liberal model, because the state does not intervene directly, but tries to stimulate the given field to self-regulation (cf. Maasen & Lieven 2006; Rose 1999). The approach favoured by facilitators corresponds on a policy model that concentrates on forms of deliberative democracy (cf. Delpos, Haller et al. 1998). The prime target group of facilitators consists of individuals who participate in deliberative processes. In addition, it is important for ELSA researchers, who define their role as facilitators, to disseminate the results of deliberation to a wider public, and thereby to stimulate policy processes. They try to achieve policy relevance of participatory initiatives by feeding the public discourse with the results of deliberation as an indirect influence on policy processes and their actors (cf. Rip, Misa et al. 1995; Edge 1995; Hagendijk & Irwin 2006; Seifert 2006; Irwin 2006, 2008). The policy model of advocates focusses on civil society actors (cf. cf. Delpos, Haller et al. 1998). From the advocate’s point of view, it is this group who is most crucial for social change. Accordingly, they see civil society actors as their main target group and try to support them with scientific expertise as well as to contribute to their political agenda. In relation to how policy processes are framed as according to the chosen role as an ELSA researcher, there are specific expectations of what ELSA research should do and who it should serve. At first glance, the presentation of a typology may suggest that the analysed roles are unchangeable and neglect movements between the different poles of the spectrum. This impression is sometimes the result of a particular way of understanding typologies as a representation of real people. Typologies are, however, abstractions and do not represent real persons. Typologies are analytical instruments suitable to explain social processes and circumstances (cf. Bohnsack 2001; Kluge 1999). They are constructed from aggregated elements extracted from empirical data that are contrasted from one another. Foucault hat pointed to the fact that subjectivisation practices only become fully effective through the interplay of three axes (cf. Foucault 1997[1983], Foucault 1990[1984]-b). In the previous chapters, I have explained how scientific discourse, and the processes through which human beings act upon each other, only develop

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their full efficacy when the individuals actively contribute to the aforementioned discourse and processes and virtually subjectify themselves. In this chapter, I have reversed this argument. The process of self-constituting oneself as an actor can only be successfully realised when it resonates with the social field in which it is embedded (cf. Butler 2004). If this is not the case friction and conflicts are inevitable. It is therefore decisive to conceptualise the process of self-constituting of the researcher not merely as the expression of an inner desire of self-realisation, but as a co-produced constituting of actors which is always connected to the field in which it is performed. In other words, the particular self-definition is dependent on the social context in which it is made and on the anticipation of how such self-constituting may become beneficial in this context. Against this background, the governance strategy of the integral ELSA arrangement becomes apparent. It tries to make clear to the participating individuals how they can benefit when constituting themselves as subjects in a certain way. I have translated this issue into an empirical question and investigated the extent to which it is possible to change one’s own role during the research process, and discouraging and stimulating factors of such mobility. To summarise the results of my analysis, I focus on two main attempts of changing one’s own role as a researcher. The first attempt can be described as a movement along the axes between the process of selfconstituting as a collaborator, who seeks proximity to the actors in the field, and as a scholar who pursues autonomy. The second attempt is the movement along an axis that runs between the process of self-constituting as an advocate who takes a stand and as a facilitator who seek to provide moderation. I call this the normativity axis. Moving along the normativity axes towards neutrality is not only possible, but, in the bioscientific network, this movement is received positively and explicitly encouraged. Particularly advocates feel compelled to frame their concerns in the language of scientific impartiality, which can be interpreted as a specific form of academic self-disciplining. Anyone who works in academia needs to demonstrate the ability to connect with the scientific community and to present one’s own work in an appropriate form. Research approaches are subject to cultural norms of what counts as scientific and are therefore recognised by a peer community. It is nearly impossible to ignore the basic social norm of impartiality. This is especially true for facilitators who cannot afford to favour a certain standpoint over other claims. Taking sides would undermine their position as a neutral facilitator of processes where all voices should get the possibility to be heard. A movement towards the opposite direction is, however, hardly possible without causing conflicts. This is especially true for all those who facilitate deliberative processes and try to allow different perspectives equal opportunity to being heard. By comparison, movements along the axes between proximity and autonomy are easier to perform. It can be argued that this oscillation between proximity to the field of investigation on the one hand, and the publication of research findings amongst

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one’s own scientific community on the other hand, is, to a certain extent, a general characteristic of all ELSA research. However, also in this regard, there are factors of friction which restrict ELSA researchers from moving between a scholarly and a collaborative role. One of the most critical issues is the communication of criticism to third parties outside the immediate research environment. This is precisely the reason why publishing the results of social scientific research can lead to serious conflicts between ELSA researchers and bio scientists and may even result in the end of their collaboration. Neither for scholars, nor for collaborators, is it possible to enact the respective role in its extreme form. The reasons are obvious. As long as ELSA researchers use empirical methods, they need to strive for a certain proximity to the field of investigation. Hence, negotiating field access can be called the obligatory passage point (OPP) using a term from Actor-Network theory (Callon 1986; see also Galison 1999[1997]; Galison 1999). On the other hand, it is insufficient for collaborators just to present their own findings to the actors of the field of investigation. As long as they work in the context of academic research, they need to present their work to their peer community and write respective publications. Consequently also publishing in journals of one’s own scientific community is a necessity of scientific knowledge production that cannot be neglected. However, precisely the process of publishing is a strategic endeavour which can lead to conflicts. There is another important reason that can significantly restrict the room to manoeuvre between different roles as ELSA researcher, which is the consideration of future intentions to carry out research in the given social field. Already Erwing Goffman noted that the behaviour of a person in the presence of others can only be understood when taking future perspectives into account (cf. Goffman 2010[1959]:67). Hence, whenever a continuing relationship with the actors of the field under investigation is desired, this relationship becomes disciplined. For this reason, scholars also need to move towards collaboration, especially when they want to obtain field access in the future. Equally, collaborators will bear in mind their relationship with those whose work they study, when publishing results of their collaboration with their colleagues from the biosciences. Considering that ELSA research is a scientific practice that was deliberately initiated and organised in very specific ways, it is only consequential to address the systematic difficulties of such arrangements in which the study of ethical, legal, and social aspects is made an integral part of bioscientific research. The most apparent difficulty is to publish critical analysis of the professional practices of those with whom collaboration is initiated and encouraged. For this reason, I argue that the particular way in which ELSA researchers frame their own role when studying ethical, legal and social aspects of genomics is an effect of the bioscientific network in which

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they are enrolled. ELSA researcher certainly contribute to the shaping of their particular role as a researcher, but at the same time it is true that they can only do so in the given social context in which they are integrated. Despite their power to define the organisational conditions such as the design of research programmes, science policy makers do not fully determine the way in which social scientists and their colleagues from the humanities constitute their role as ELSA researchers. It is part of my arrangement, that ELSA researchers are encouraged to find creative ways to study ethical, legal, and social aspects of genetic medicine in ways that are meaningful to them. Because of this possibility and because there is some freedom in that, social scientists and their colleagues from the humanities have an interest in engaging in ELSA research (and develop it to the best of their professional standards). Against this backdrop, it is clear that the ways in which ELSA researchers constitute their own role is not a repressive and enforced matter. Rather it is carried out to the advantage of the researching individual. The performance of specific roles of research becomes beneficial, for instance, when negotiating field access with the actors of the field. The presentation as impartial scholars who mainly address fellow academics is functional in order to allay fears of public controversies (or provoking it through ELSA research). Offering beneficial collaborations is another way of utilising one’s own role for approaching bioscientists and experts of genetic medicine. The analysed interview data suggest that especially the framing of one’s own role in terms of neutrality and impartiality is expected to become functional for the research process. The agreement on joint benefits, common interests and shared cultural norms is particularly important when made the point of departure of ELSA research. If such common ground can be developed, it is possible to create stable relationships to other actors of the research context. However, where this cannot be achieved the given research endeavour is likely to face resistance or even fail. Scrutinising how the processes by which human beings act upon others correspond with specific forms of self-constituting allowed me to study the interplay between different subjectivisation processes. In the next chapter, I continue my analysis by studying the processes through which ELSA researchers try to negotiate their own process of self-constituting with those they encounter during the research process. In such a way, I relate the processes by which human beings act upon themselves to those by which they act upon others. Using an actor-network-theory perspective, I argue that individual spaces to constitute oneself as ELSA researcher are specifically pre-structured and created by the networks in which they are enrolled as actors. Hence, I argue that the allocation of oneself as a subject in the field of study is an affair that needs to be negotiated with the other actors of that area. What particular role as an ELSA researcher can actually be realised, depends strongly on the acceptance of the research agenda pursued. This raises the question how ELSA re-

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searchers are perceived by professionals of genetic medicine when the former approach the latter with the request to give an account of their work. How do ELSA researchers deal with such perceptions of their own person and their research intentions? In the following chapter, I therefore discuss the strategies by which ELSA researchers and professional of genetic medicine negotiate what precisely can be done during their encounter and possible collaboration. It is during these negotiation processes where it is determined who ELSA researchers are for those they encounter.

13 Negotiating who ELSA researchers are

It is crucially important to understand that ELSA researchers are neither fully independent to constitute themselves as researchers, nor are they completely unrestricted in defining their own research agenda. In this chapter, I demonstrate that ELSA researchers need to negotiate their self-constituting and research agenda with the other actors in the field in which they carry out their research. For this reason, I focus on the encounter between ELSA researchers and professionals of genetic medicine during empirical ELSA research. However, I do not frame the negotiation of relationships as a merely individual matter, but instead I analyse this negotiation as an element of the social context in which they are performed. It is, therefore, important to understand the shaping of relationships between ELSA researchers and professionals of genetic medicine in relation to the social context in which they are embedded. It is the goal of my analysis to bring to light how the negotiations of actual research relationships are carried out considering both individual room to manoeuvre and contextually pre-structured conditions. In order to fully appreciate the significance of ELSA research as a unique arrangement to organise research, it is crucial to recall the fact that such programmes bring social scientists together and professionals of genetic medicine in quite specific ways. Funding providers explicitly encourage social scientists and their colleagues from the humanities to discuss the scrutiny of ethical, legal and social aspects not just amongst their own peers, but the entire research process should be more closely integrated into bioscientific research and thereby produce outcomes which are relevant beyond a merely scholarly audience. In many respects, the ELSA research can be seen as a show case of STS research that allows discussing current developments of the field. Many, which have become so apparent in the social study of genomics, are not specific to this research area, but are relevant to STS in general. This is particularly true for the framing used to convince funding bodies why STS research should be supported, and also for the urge to collaborate with the “hard” sciences.

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In order to inform my analysis with further STS literature, I draw on actor-network theory (Callon 1986; Latour 1999b). Against this backdrop, I argue that networks create action programmes and thereby shape whether or not action is perceived to be meaningful in this network. In a second step, I discuss concrete action programmes of the networks in which ELSA researchers become enrolled while carrying out their work. This allows me to explain how tensions arise when ELSA researchers become enrolled in competing networks. In a third step, I focus on how ELSA researchers describe how they perceive their relationships to the bioscientists and physicians of genetic medicine they encounter over the course of their research. In a fourth step, I analyse the narratives used by ELSA researchers do explain how they negotiate their relationships with bioscientists and physicians of genetic medicine. This allows me to discuss a key issue of ELSA research. It is the tension between autonomy claims and utility demands. To conclude, I explore how ELSA researchers seek to develop a common ground with bioscientists and physicians of genetic medicine in order to develop a fruitful basis for their work.

13.1 T HEORETICAL

BACKGROUND

In order to analyse ELSA research as a social practice and thereby scrutinise the way in which ELSA researchers negotiate their intended research agenda with those they engage with during the research process, it is important to understand how ELSA researchers are perceived by those they interact with during the research process. This becomes most evident during empirical research. Social scientists, especially when working empirically, need to establish a working relationship with the actors whose work they aim to study. Field access is crucial and for this reason it is necessary to explain the purpose of social inquiry and why that is a meaningful undertaking to carry out. When social scientists explain their work, they need to state what they aim to do during their research and how they intend to use the acquired data. In essence, they need to give an account of their research practice. It is important for bioscientists and physicians of genetic medicine to get an idea of what ELSA researchers aim to do and how that affects their own agenda. If ELSA researchers fail to give a convincing explanation of their work and how that is relevant for the bioscientists and physicians of genetic medicine they approach, this may prevent the establishment of a working relationship, the breakdown of an agreed collaboration, or it might at least compromise the continuation of the research process. In order to avoid negative development, social scientists therefore strive to establish a positive relationship with the actors in their field of study, that implies a need to negotiate what they do and who they are in relation to the research process. It is crucial to appreciate that who a researcher is in the research process is a product of social practices. This implies that who ELSA researchers are does not simply depend on

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how they constitute themselves, but rather, it is negotiated between (or co-produced by) those who they interact with in a given context (cf. Mishler 1986:7; Lee & Roth 2004; Kezar 2003). Analysing the concrete practices through which relationships are being negotiated, I draw on actor-network theory (cf. Callon 1986; 1992, Latour 1999b). The strength of this approach is explaining the action repertoire of actors in relation to the network in which they are integrated. Bruno Latour suggests symmetry between human and non-human elements of the network. It was especially controversial received that with that Latour attributed the ability to act also to artefacts (cf. Collins & Yearly 1992:312,321; Callon & Latour 1992; Bloor 1999a; Latour 1999a; Bloor 1999b; see also Schulz-Schaeffer 2006). Acknowledging this criticism, the actor-network theory, nevertheless, offers a fruitful perspective on the issues addressed in the present study. The main point of interest is what allows ELSA researchers to act and what prevents them from doing so. Instead of focussing on the intentionality of actors I will analyse the effects of networks which stimulate or limit the repertoire of actions. Already Michel Foucault emphasised in his work that power is not restrictive in the sense that it restricts the possibilities to act. On the contrary, Foucault aimed to analyse the mechanisms through which particular forms of action are stimulated and created. His point was that power is productive (Foucault 1991[1975]). With the present analysis, I aim to demonstrate that ELSA researchers are enrolled in various networks and how this embedding constitutes the ways in which they are able to act. I draw on actor-network theory in order to present empirically grounded findings. However, I do not discuss the ability of technical artefacts to act, since that was not the purpose of the study at hand. The relevant aspect of actornetwork theory is that it suggests that the identity of an actor is constituted through action, i.e. it depends on the effects an actor has on other actors of a given network. Bruno Latour argues that “… there is no other way to define an actor but through its actions, and there is no other way to define action but by asking what other actors are modified, transformed, perturbed, or created by the character that is the focus of attention” (Latour 1999b:122). Thus, it is generated by other elements of the network (Berger 2010:60). Actor-network theory offers a fruitful theoretical perspective to conceptualise the ways in which ELSA researchers become enrolled in networks that frame and shape their action programme. These networks define (an ideal of) what a meaningful action is in a given context. Against this backdrop, it is possible to explain, the processes through which ELSA researcher become who they are as a co-production of all actors in the field. According to actor-network theory, networks need to be stabilised in order to continue to exist. Stability is a result of processes causing convergence and irreversibility. The philosopher Wilhelm Berger explains that convergence

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develops to the extent to which an actor accepts mutual action programmes. Irreversibility is interpreted as an effect of the “persistence” of an action and is rather attributed to non-human, i.e. technical actors within the network (cf. Berger 2008:94). Convergence means the alignment towards shared goals. This also implies that an actor can act meaningfully in a given network if he or she operates in accordance to such an alignment. Berger reminds us that according to actor-network theory human beings are not pre-existent entities who act in a way according to actions as an external feature. Actors would not be themself without executing precisely these actions (Berger 2008:95). Researchers of the social study of genomics do not exist in themselves, but rather they only come into being through the problematisation of genomics (to which they contribute). Michel Callon points out: “The interessement, if successful, confirms (more or less completely) the validity of the problematization and the alliance it implies” (Callon 1986:209-210). From this perspective, ELSA researchers are “hybrids”, in a sense that they only exist as a result of issues which they problematize. Scrutinising genomics is not external, but it is constitutive to their existence. In other words, the problems to be studied are effects of a specific association, namely that existence of the social study of genomics as a requirement for the funding of genome research. Michel Callon is once again instructive on this issue. He notes: „B is a ‘result’ of the association, which links it to A. This dissociates B from all the C, D and E’s (if they exist) that attempt to give is another definition“ (Callon 1986:208). Thus, a network requires actors which act in a specific way, i. e. it needs convergence towards a shared problem perspective (goal). Callon goes on: “For all the groups involved, the interessement helps corner the entities to be enrolled. In addition, it attempts to interrupt all potential competing associations and to construct a system of alliances. Social structures comprising both social and natural entities are shaped and consolidated.” (Callon 1986:211)

But, for Callon, one can only speak of “enrolment” if an “interessement” actually leads to an alliance. If the actors act differently (as according to the action programme of the network), they disrupt the network. They become other actors and, therefore, they are not perceived as meaningful elements of the network, because they threaten the stability of the network. They are orientated towards other competing perspectives and in such a way they enrol in other networks. I shall elaborate on how that plays out in practice. For that purpose, I draw on an empirical study I carried out interviewing fellow social scientists studying genomics using qualitative methods of social inquiry (cf. Bogner, Littig et al. 2005[2002]; Flick, Kardorff et al. 2000a; Schmidt 2000; for more details on methodology see chapter 3).

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AND THEIR ACTION PROGRAMMES

At the start of a new co-operative relationship, it is primarily important for ELSA researchers to develop an understanding of how they can become actors of the networks in which they operate. The interviewee quoted below explains his difficulties to act as a social scientist in a medical department which recruited him to carry out public engagement activities. He contrasts his experiences with the medical environment to those experiences within his disciplinary home as a social scientist. In the environment of his own discipline, he can act as a researcher. In the network of his scientific community, these practices are received positively and resonate well. The same attempt to act as a researcher is met with aversion and rejection in the medical department, the other network of which he is a part. This interviewee describes his experiences as follows: “If it’s still happening to you, (1) and you lose your identity, (2) erm, you almost feel you’re getting captured, (1) and there’s nothing you can do, because (1) you’re (1) small fish in a very large pond, (1) and, erm, and that’s what I said, you know, ‘Thank God for (my institution)’, because I have my support, you know, because if there was just me on my own [and] (2) doing that job, (1) I ... I would - well, if I’d still be in the job - I wouldn’t be (1) doing what I wanted to do [...].”

The extract shows very clearly how this interviewee experiences his situation of being integrated in two networks with different demands as a severe conflict. Both networks have their own “action programmes” (cf. Latour 1999b). Using this actor-network-theory term, I refer to expectations of what the quoted interviewee is supposed to do in the respective networks. Whereas one action programme encourages him to perform research, the other one restricts his activities as a social scientist. The conflict plays out as contradicting expectations in his job, which he cannot meet in equal ways simultaneously. I have presented this example for more general discussion as to how ELSA researchers are embedded in different networks. To analyse these processes, I use the notion “enrolment” as suggested by Michel Callon (1986). Using an actor-networktheory perspective allows me to bring to light the ways in which ELSA researchers become actors of a network. In order to illustrate my point, I quote another passage of the previous interview. It is through his job that the interviewee is integrated into a medical network that confronts him with particular expectations. This means that he is perceived as an actor in a very specific way, namely as administrative employee. The interviewee continues to explain his situation:

246 | H OW GENES MATTER “And so, when you’re (1) doing public engagement, you know, a lot of people (1) pigeonhole you, as I said, and under this kind of publicity (1) [to more] community engagement, you know, and all those people who work in more kind of administrative roles.”

Enrolment in a medical network leads to the quoted interviewee being confronted with the expectation to organise public engagement activities. Apart from the apparent conflict resulting from the divergent expectations of two different networks, the extract demonstrates that ELSA researchers can only act within a given network. Who they are is not only a matter of how they constitute themselves, but it is also a result of how the members of the network in which they operate act upon them and thereby constitutes them as actors. However, enrolment is not only carried out through employment. It can also happen on a short term basis, e.g. during a conversation. Another characteristic example of how bioscientists and physicians of genetic medicine frequently try to enrol ELSA researchers into their networks is the attempt to assign ELSA researchers with a task. In the following extract, the quoted interviewee explains how he was given the task to report a specific message back to his funding agency. “No, earlier I didn’t mean like a journalist, but I meant, that somehow you are used as a messenger in a sense that: ‘Now I have a request and I want you to tell this request to your client. I want you to say, how little money we got, that this is such a problem.’ Or: ‘I want you to report that this is such an awkward legal regulation.’ Or that this is over-regulated, or ... well, something like that.”

Attempts to commission ELSA researchers as a messenger can also be interpreted as enrolment. In the quoted case, it is the attempt to integrate social scientists into a network and to align them to the goals of this network. The extract shows that the objective of integration in a network is to stimulate specific actions. In this sense, networks are productive rather than restrictive. It is a characteristic of ELSA research that those who carry it out are typically enrolled in more than one network. Obviously, funding agencies also enrol researchers in their own ways and expect them to follow specific agendas. ELSA researchers are often enrolled as policy advisors. Providing expertise suitable for (political) decision making is an important aspect of ELSA research. Expecting social scientists and their colleagues from the humanities to provide such type of expertise can be interpreted as the enrolment as specific actors of a science governance network. The main mechanism to enrol ELSA researchers into such networks operates through awarding research grants. In the following section, I will discuss four crucial dimensions of enrolment.

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Loyalty The ways in which ELSA researchers become actors depends very strongly on the relationship they develop to their colleagues from the life sciences. There is a broad range of different arrangements that shape these relationships. Sometimes the interactions between ELSA researchers and professionals of genetic medicine are rather punctual, often they only consist in the interaction during a research interview. There are, however, also long-term co-operations, which allow for a regular exchange. Long-term relationships result in loyalty obligations towards the other partner. The term loyalty expresses a moral bond which consists of a mutual commitment. It is characteristic for the context of ELSA research that such loyalty relationships are of a rather pragmatic nature. Co-operative relationships are established for a particular reason, and they are geared towards a joint benefit. Against this backdrop, loyalty is functional for the expected benefit. Especially when relationships are intended to continue in future, loyalty is a form of purposeful pragmatism. In the following interview, loyalty issues are addressed in a paradoxical way: “I mean this is more general (1) for the whole of the (institution), you don’t want to say, you shouldn’t come to genomics research, because then you wouldn’t get any funding yourself you know, and er, this is where Paul Rabinow is quite interesting because in his book he [...] has a section (1) called: ‘Bite the hand that feeds you’, (1) you know that [...] So basically saying: ‘Criticise (2) the people for funding the research that funds you’, you know.

Referring to a specific publication, this interviewee addresses loyalty relationships of interdisciplinary research teams. Once enrolled into co-operative relationships it is difficult for the actors of the respective network to criticise other members or their work. Whoever crosses this boundary puts the entire relationship at risk and might even provoke the breakdown of the co-operation. The quoted interviewee does not perceive fundamental criticism as a road that is suitable for her to pursue. It is decisive to note that co-operative relationships between ELSA researchers and their colleagues from the life sciences are not merely academic; these relationships are also economic. The reason why co-operative relationships are established is to a large degree because they are made a necessity by the funding agencies. If such co-operative relationships are organised in the form of employment, they can develop particularly strong dynamics to shape these co-operative relationships. Working relationships create loyalty, which encourages (or discourages) ELSA researchers to act in specific ways and thereby shapes them as actors. The following extract shows how the quoted interviewee aims to please his boss. In such a way he demonstrates his loyalty to his employer. He finds himself enrolled into an arrangement that allocates him on the side of his employer. He explains how he experienced his situation:

248 | H OW GENES MATTER “... with my job it’s the first time into running these events that someone’s asked an awkward question, (1) it’s the first time I’ve had my shoulders go a little bit: Oh, I’m facilitating this, (1) you know. (1) And it’s because of the dynamics of your job and (1) who your (1) line managers are, and you don’t want to run an event that is (1)... made them feel extremely uncomfortable. (3) That’s how I (1) felt.”

This interviewee perceives his job to be the decisive factor that determines the way in which he can become an actor. The network, in which he is enrolled, expects a very specific repertoire of action of him. The interviewee realises this expectation of him as he continues to explain: “Well, it ... in the (event) I am the facilitator, (1) okay. So, (1) people speak (2) public aware ... Okay, so, (1) I’ve got to recognise what my position is in that (1) event, as well.”

Loyalty conflicts are made quite obvious in this extract. The interviewee explains how his job pre-structures his action programme. His repertoire of action is at the same time stimulated and restricted. He continues to note: “It’s being a (1) chair (1) or a facilitator in an event. (2) However, what I have noticed in my job, just personal reflection of me, (1) is that in running these (events), in running (1) these (event), I felt much more nervous about (1) interesting, yet controversial questions from the public (2) because I’m thinking: oh, I’ve run this event, I don’t want to put anyone into, (1) you know, (1) feeling ridiculously awkward and thinking: ‘What, yeah, you just employ this guy?’, me. Basically we’re getting attacked from everywhere because of that. Okay, so there is that, (1) which is, I think, (1) totally understandable, (2) as a sociologist. Put a sociologist hat on [that], then (1) it’s then I’m thinking, well: (1) surely that’s what you want [laughs] you know. Erm, (1) it’s because you are facilitating and chairing an event as well, you know, you have got to, (1) you know. So it’s, you have these multiple hats, (1) and in that time you are someone that’s (1) not, you know, that (1) is there to prevent anything (1) escalating and also (1) keeping to time and pushing on and making sure that everyone has a contribution, you know.”

The described network consists of many different actors with various tasks, functions and expectations. Together they constitute and pre-structure the repertoire of actions possible in the network. In other words, the actors of a network act upon each other’s actions and thereby constitute who they are in this context. Loyalty to co-operation partners can result in compromises regarding one’s own disciplinary standards. In the following extract, another interviewee explains why this was necessary in order to protect the interests of fellow co-operation partners. Yeah, they are sort of the only ones in (this country) who work [on the] depression [...], (1) and that was simply to protect them, whereas I think it’s really bad ethnography if you cannot tell

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(1) the diagnosis, who is this actually about? [laughs] I mean, that was a big compromise (1) for me, (1) er, because usually I would think, this is not just about (1) anything, it’s about (1) depression people ... being recruited to pharmacogenomics (1) research.

In the described situation loyalty can be understood as a means to maintain a relationship and prolong it in the future. In order to avoid the risk of conflict or even a possible breakdown it is necessary for ELSA researchers to respect the interests of those whose work is being studied. In the quoted extract, this conclusion is presented a necessary sacrifice in order to sustain dialogue. Instrumentalisation ELSA researcher repeatedly note that they do not want to be instrumentalised (cf. Macilwain 2009). In doing so, they address the ways in which the goals of a given research context are being defined. Instrumentalisation refers to a situation in which an actor cannot participate in the processes that determine the courses of action, but instead needs to fulfil pre-defined tasks and only has minimal possibilities to choose the means to achieve the expected goals. In other words, instrumentalisation refers to a given action programme that is oriented towards externally defined purposes. ELSA researchers feel instrumentalised when they do not share the goal perspective they are expected to pursue. In the following extract, one interviewee explains that she was approached to join a co-operation with bioscientists because that would increase the chances to obtain funding. The interviewer asks how the co-operation came to be. Interviewer: Mhm, and that’s because it was a funding requirement? Interviewee: Erm, I think so, I’m not sure (1) if it was a funding requirement, but I think so, and even if it was not, it didn’t say, erm, (1) you know, that you have to. (1) The people (1) who were leading this project knew that it would make it more robust and it would make it better (1) if they had it. So (1) even if it was not a requirement, there was (1) a very strong understanding that, er, one needed to (1) include (1) the ethics perspective to make it more (1) sort of robust and, er, it would have better chances. Interviewer: Mhm. So in this case one could say there was a, (1) erm, a bit more of an instrumental, er, expectation in you. Interviewee: Yes, and certainly, er, and ELSA framework that was, er, sort of, they ... The ones who applied for this (1) application, this project, they knew that the ELSA thought (1) was sort of circulating, (2) and it may have been a requirement. I just don’t know, (1) it probably, it may very well, er, have been.

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Even though this interviewee was not entirely sure whether the reason for being invited to join a bioscientific research project was funding requirements or not, she was sure of the fact that the reason she was approached was rather instrumental. Another interviewee was asked if he felt that his work was used to enhance the acceptance of the life sciences amongst the public. The interviewee emphasises that he does not want his work to be framed as the provision of acceptance and distances himself from such expectations in ELSA research. He notes: “I would avoid the word acceptance altogether. I don’t want myself ..., and this I regard as instrumentalisation. Yes.”

Circumstances can be framed as instrumentalisation where the enrolment into bioscientific networks does not happen on the basis of congruent goal perspectives. The same goes for circumstances where no possibility is given to participate in the definition of the pursued goals. Then the function of ELSA researchers is limited to the execution of pre-given action programmes. However, the enrolment into a network does not imply that this happens in a rigorous and hermetic fashion. Most of the time ELSA researchers find some space to constitute themselves, which allows them to engage in relationships with other networks. The embedded social scientist The integration of social scientists and their colleagues from the humanities into large scale scientific research arrangements is often discussed as a possible future scenario of ELSA research. This means that ELSA researchers do not work as an independent researcher, but instead as “embedded social scientist” or “embedded philosopher” etc. (cf. Macilwain 2009:840). The main criticism of this scenario is that such enrolment into large consortia may lead to a marginalisation. A number of interviewees critically note that such network configurations limit the ways in which ELSA researchers may become. One interviewee explains: “If public engagement (1) or whatever term (2) becomes this buzzword that justifies (2) sociologists (1) [...] whatever philosophers, whatever [...], to do (1) to be on research projects, to do work. (2) I fear it will be to the detriment (1) of (1) STS. It’s just a feeling. (1) Erm, (1) I, I see (1) – and again that’s my own opinion – (1) I see a trend towards (1) these kind of research institutes, you know. You get a kind of systems biology institute where (1) academics from different departments are all based in one (1) co-located campus, (1) and I see (1) areas of research, big areas of research, be in the way forward within universities. You have a big colocated campus that might have computer science, biologists, psychiatrists, psychologists, geneticists, and then the odd sociologist. So you become (1) part of that group and your project, (2) it, is subsumed under a larger project, and then you don’t get social science projects into science per se with sociologists as working on it. And if that happens, then I do wonder whether

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you end up (2) becoming (1) just (1) [...] doing, (1) not being able to do perhaps some of the old style STS work.”

The use of the phrase “the odd sociologist” and the verb “subsumed” indicates the concern of marginalisation under the described circumstances. The interviewee fears that social scientists would no longer be the master of their own research agenda, i.e. that they would no longer be able to formulate the research questions and lose their sovereignty over the quality assessment of their work to non-peers. Such concerns about arrangements of “embedded ELSA researchers” are typically framed as an undesirable counter-model juxtaposed with “ELSA research in its own right”, which does not depend on the fact that it is beneficial for a particular group of stakeholders. Peer community There is another important dimension of enrolment. Also, academic environments are networks that stimulate favoured behaviour and sanction undesired actions. In this sense, I argue that, in the context of one’s own scientific community, researchers can only become actors, if they comply with the norms of the respective network. This fact plays out in scientific publication cultures as one interviewee explains: “Yeah, well, it’s (3), hm, (6) it’s, well, I suppose what we’re rewarded for in the UK is (2) journals (1), high-quality journals [...] publications, so that’s going to be addressing your peers, [... and] that’s what the pressure is.”

The extract unmistakably demonstrates that everybody who does not comply with the described publication culture or fails to achieve the respective requirements will simply be excluded from the academic network (cf. Finetti & Himmelrath 1999; Hanekop & Wittke 2007). The mentioned action programme is indeed restrictive, and it obviously produces a very particular form of scientific practice. This “rules of the game” are also explained during another interview. The interviewee explains the constraints to publish and disseminate research findings. “We are in a strange dilemma. We somehow need to be a jack-of-all-trades. We should publish, we should publish internationally, we should publish as high-ranking as possible, and on the other hand we should invest a lot of time for dissemination programmes, in order to feed-back that this doesn’t simply catch dust, but that there ..., that is indeed important.”

Precisely because scientific communities have their own requirements and because they define what counts as a scientific research amongst their peers, conflicts may arise when researchers become enrolled into networks with divergent action programmes. Against this backdrop, I argue that ELSA research needs to be analysed as a scientific practice that simultaneously enrols social scientists and their colleagues

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from the humanities into various networks. Along these lines, it is possible to interpret the contentious circumstances, under which ELSA research is carried out, as a systematic product of very specific organisational arrangements of scientific knowledge production. When ELSA researchers approach their colleagues from the life sciences with the request to study their professional practices the enrolment into different networks becomes apparent and may even provoke conflicts. In these situations, it is necessary to enter complex negotiation processes, which I will discuss in the remaining part of this chapter.

13.3 E XPERIENCING

RELATIONSHIPS

The ways in which human beings act in a relationship depend to a large extent on how they perceive those they encounter. Already Erwing Goffman and other exponents of symbolic interactionism have demonstrated this fact (Goffman 2010[1959]). For ELSA researchers using empirical methods this insight is of great importance. For this reason, I have analysed the relationship between ELSA researchers and those they interact with over the course of their research activities. Over all, ELSA researchers describe their relationship to their bioscientific colleagues in positive terms. On occasion, however, they point out difficulties and conflicts which results in a more differentiated account of how they experience these relationships. I interpret the reason for problematic experiences seldom being taken into consideration a consequence of the fact that ELSA researchers tend to tell success stories when they are interviewed by a colleague. Occasional indications of difficulties and friction are therefore interpreted as indications of a larger problem context that only partially comes to light when using the research interview as a method of inquiry. Problematic aspects are sometimes trivialised with statements that it would be labour intensive and time consuming to get an appointment with professionals of genetic medicine. A closer look at the data reveals how ELSA researchers experience their relationships with professionals of genetic medicine. One of the core themes of their accounts concerns symmetry and asymmetry of the relationship. Asymmetry In the following extract, the quoted interviewee talks about his experiences with physicians and bioscientists, which he frames as asymmetric relationships. He states: “Well, the first thing that comes to mind is: asymmetry. Well, there always is a drop. It is also somehow a jovial relationship from the side of the scientists, I got the impression.

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The interviewee uses the positive term “jovial” to describe his relationships to professionals of genetic medicine and he points out that he has not experienced interacting with them as contentious. In this generally benevolent atmosphere, professionals of genetic medicine create, however, asymmetry which the quoted interviewee identifies as a knowledge difference. The interviewee continues by explaining how the mentioned asymmetry becomes performed: “At first, an asymmetry in knowledge. Because the issue is always very much to ask these questions, the issue is to possess a certain technical knowledge. And sometimes I got the feeling – or in some of my interviews, I had sometimes the feeling – you need to get through this filter. They drop some technical terms and they check if you got it. And when you passed this test then it is somehow o.k. But generally, I find there is an asymmetry.

In the quoted extract, the interviewee describes not only the existence of asymmetry, but also the processes through which it becomes established. The presentation of scientific facts and efforts to convey expert knowledge has a performative function for the establishment of asymmetric relationships. ELSA researchers can hardly elude such attempts of bioscientists and physicians who aim to shape the negotiations of expertise. Accepting bioscientific and medical expertise is described as the entry ticket for the research interaction. Another interviewee describes this situation as a type of entrance examination through which his admission to the conversation was negotiated. “And I also remember that it was difficult to get an appointment in (place) a few times. Well, let’s say: It wasn’t difficult to get an appointment, but it was difficult to arrange a conversation, because there were a few test-conversations in advance in which the focus was on questions like: ‘Where does he come from? Which institution is that? What will he do with this research? Which consequences could follow for us from it’, and, ‘What does he want anyway?’ I had this a number of times, as it were, a kind of entrance exam for the actual conversation which then followed.

Although my interviewees repeatedly told me about their positive experiences and the benevolence of the professionals of genetic medicine, they also recall negative experiences. One interviewee told me: “There are also other interviews where you leave and you somehow feel sully. This can also happen, very rarely. I had two interviews in my life where it was like that. But most of the time, a kind of sympathy and understanding during the interview develops from which you need to distance yourself again. Well, it does happen something like walking in somebody else’s shoes when you conduct an interview.

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ELSA researchers are very much aware of the fact that they need to negotiate their relationships. They consciously enter such relationships and know that they need to invest in the relationship. In the analysed interviews, they give an account of how they shepherd bioscientists and physicians. Caring for the relationship becomes a priority. The quoted interviewee explains why he considers this to be necessary, and he justifies his view with the claim that benevolence is a vital precondition for the existence of ELSA research in the future. Everybody, who wants to continue working in this field, needs to make sure that the existing benevolence remains to be granted. Disrespect and rejection It was already mentioned that the integration of philosophical and sociological reflection is not always initiated on the basis of genuine interest by professionals of genetic medicine. The reason for the integration of ELSA research is mostly a result of the requirements of funding agencies. However, the actual terms of such a “marriage of convenience” still needs to be negotiated. In the following extract, the quoted interviewee explains how she has experienced disrespect and rejection when approaching professionals of genetic medicine: “No, but I have had, (1) or, (1) I have had, erm, (2) some uncomfortable experiences with a certain person who, (1) erm, you know, I was trying to get into, (1) you know, doing some research in, er, [in a scenario] of psychiatric genetics, [or] at least genetics and mental health. So I went to talk to someone to try and (1) find out about a ..., (1) more about what they did and say: ‘I’m interested in this. I’d like to do some research.’ You know. And see if there’s any ... (2), if, er, they were willing to let me in. And he just ..., his immediate reaction was, erm: ‘What’s your agenda?’ You know? He was very suspicious of what I wanted to do, and that was, I think that was partly because, erm, (1) this was when I was working [...] at (institution). (1) [I think that] that’s partly to do with (1) politics within (1) the (institution), (1) but (1) I think it was also, you know, him being very, erm, aware of what a social ..., not that I (1) would normally call myself a social scientist particularly, but of what someone like me would be doing there. Why would I be interested? (1) And that [...], and ... that was really uncomfortable, (1) because I just thought: oh, he, you know, he just, (1) he’s not very willing to talk to me at all. He thinks that I’m, (1) you know ... So that was the worst, (1) erm, (1) experience I’ve had. But it may have just been because he was a professor, and he thought, I should be (1) [laughs] more, I don’t know, (2) [...], what’s the word, more ..., (1) Perhaps he thought it was a bit, (1) you know, some people [...] in a sort of high position can be a bit offended by (1) a lowly researcher coming to talk to them, you know.”

The approach of an outsider who requests to know more about a specific medical area is sometimes met with hostility. In such a way, the quoted interviewee interpreted the question of her vis-à-vis who demanded to know what her agenda was. This extract

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demonstrates the strategic character of the relationship. Professionals of genetic medicine seek to find out who approaches them, what goals they pursue and, most importantly, whether the encounter may benefit or harm them. The ways in which professionals of genetic medicine answer these questions to themselves are decisive for how they behave in the encounter with ELSA researchers. The quoted interviewee also mentions the importance of hierarchy and status differences. She continues to state that she has experiences the disrespect of those she met: “I think it depends on the person, but I’ve definitely had, (1) you know, a lot of experience with people, erm, (1) being very dismissive of social science and ethics and, (1) erm, (1) things like that, erm. (1) But it’s not necessarily (1) done in a sort of, erm, aggressive way, [seven lines omitted] I’ve had conversations with scientists who say, well, you know: ‘Social science just,’ you know, ‘just ..., it relies on science, just follows it around.” (1) You know, and, er: ‘If there wasn’t any science, there wouldn’t be any social science.’ Or something like that, you know: ‘It’s, erm ...’ (1) Or: ‘It’s just soft’, you know, ‘there’s no ... Where’s the rigour? It’s all just (1) talk.’”

At the end of this extract, the interviewee once again explains what she experienced as disrespect. She uses the expression that social scientists would “just follow it around”. Social inquiry is framed as banal and soft, something that is not properly scientific. What do bioscientists and physicians expect of someone they disrespect? What do they expect from non-peers? The quoted interviewee frames her work as facilitation, but she is not quite sure what is expected of her: “I don’t know, I think it’s, (2) because of the role I end up taking when I’m doing this work, it’s probably ... (1). I mean, I don’t know. That would be interesting to ask somebody, [...], erm, (1) I imagine [they], erm ... I would be seen much more as an admin (1) sort of [...], a lot of my work does involved (1) administration in some way. But (1) maybe as if, (1) you know, I suppose, I think (1), I facilitate things. So maybe other people think (1), I facilitate things but not that I’m a communicator necessarily, I don’t know.”

In this extract the quoted interviewee states that she facilitates the study of ethical, legal, and social aspects of genetic medicine. She organises events and brings various perspectives to the table. However, she draws a boundary when she declares that she would not be a communicator. This statement can be interpreted as the refusal to speak in somebody else’s name or to promote particular interests. In other words, it is necessary to negotiate who can say what in which name and what precisely the task of a facilitator is in a given context.

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Encounters at eyelevel The ELSA researchers interviewed for this study explain that the relationship to those working in the life sciences can significantly change during joint research projects. In the following extract, the quoted interviewee talks about a specific context in which she is perceived as a colleague of her medical project partners. She experiences her position as basically equal with all other persons involved. She states: “Yeah. And, erm, and so for instance in the genetics project, yeah, they (1) put everyone around the table, and invited into this project were the people who worked on this, (1) er, in (country) (1). So they had clinicians from different parts of the country, and, erm, er, and we were there, and we, (1) erm, and, yeah, and, (1) so ... they would, I guess that would, erm, (2) er, they would not, (1) it’s, I think it’s a way that we become (1) colleague-like. So when I (1) take part in such discussions, I become very much (1) a colleague (1) with the clinicians. We maybe really disagree, but we are sort of put into the same, (1) we are in the same position.”

This extract shows that organisational arrangements exercise a significant influence on how ELSA researchers experience their relationship to their colleagues from the life sciences. In the reported case, the interviewee feels well-respected with her expertise in the given context. Consequently, she succeeds in becoming an actor in a network that enrols her as a provider of a specific expertise. Against this backdrop, it can be concluded that the respectful integration of social scientists and their colleagues from the humanities needs institutional arrangements and process organisation that ensues their appreciation. It was experienced to be favourable for interdisciplinary deliberation if it is organised by high rank institutions (e.g. commissions appointed by the government) or carried out in their context (e.g. in parliament). Based on the interview data, it can be concluded that relationships between ELSA researchers and professionals of genetic medicine are experienced as being more balanced when the latter are not the process-owners of the deliberation. This clearly demonstrates the importance of the organisational conditions under which the scrutiny and deliberation of ethical, legal, and social aspects of the life sciences in research and clinical practice are carried out. Blurring In practice, the circumstances are, however, often quite complex. The relevant actors in the field are often integrated into various networks. As explained in the following extract, the quoted interviewee experienced considerable complications resulting from the fact that she is a member of different networks herself. Knowing the other actors of a network from various contexts adds to the complexity of the situation in which ELSA researchers need to negotiate their relationships. The interviewee states:

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“But I think having these (1) diverse relationships to the clinicians, they are my informants, they are my ...(1), and then they may become colleagues when, er, when we are (1) in a project together. Or (1) even (1) when I go to the (1) [...] field, er, and take part in their research meetings, they are at the (institution) – another place in town – but we are (1) at the same university, and I will talk to the (1) associate professor, who is just in a ... has completely the same work [...] as I do. And we will talk about all this: how the term has just started and [...], er, this shared conditions, which, er, then, er, give, er, (1) gives that so [...]. So we have this very colleaguelike relationship, and then we may be (1) at the board of health, and discuss a policy, erm, and that’s also, (1) we are sort of all experts (1). And it is, as experts we have, we are around, sitting there around, erm, and discuss, so, (1) erm, (1) so (1) I, in the tension between, erm, (1) being informants, er, or having, that they are my informants, that they are my colleagues, and that when we (1) operate as colleagues, they as scientists, as medical scientists, are much higher in the hierarchy (1) as I am (1). That really complicates it a lot.”

As the quoted interviewee explains, she experiences multiple layers and dimensions of her relationship to her colleagues from medicine and the biosciences since she meets them in various contexts. She points out that this puts her in different hierarchical relationships to the same people. The interviewee continues to explain her situation. Interviewer: “Aha, in what ..., can you give an example?” Interviewee: “Yeah. Erm, but [...], and just to sort of, erm ... So, in one way, when they are (1) the ..., when they are my informants, I’m the one in power, because I write about them (1) erm. When we are colleagues, in some situations, we are very equal. Yes, we are both associate professors, and we can talk about, er, our teaching and (1) [...] as a place to where we work. But (1) then in a more, erm, (discipline ...] when we then talk about the subject for instance, er, experiments on preterm animals or (1) the treatment of neonatal, er, babies, erm, (1) then (1) they would be the ones (1) who know the science (1). And (1) just as (name) sort of, er, described in his papers and in his talk, er, I’ll – as the qualitative researcher, and as a social scientist – will be placed lowest in the hierarchy (1). And they are really ... So, and this is an (1) epistemological (1) as, our epistemology as power (1) aspect of it.”

This reflexive account of the quoted interviewee shows that she is very well aware of the complex situation in which she works. As the interviewee explains, she tries to shape her relationships in a positive way through well-considered and purposive actions in order to maintain her relationship. It is, however, also important to note that relationships are not merely individual issues, as the following interviewee points out. He explains that hierarchical differences are already structurally defined through the ways in which ELSA research is organised and institutionally integrated. He notes:

258 | H OW GENES MATTER “This institutional dimension is probably more interesting. This institutional dimension - because you asked about the relationship - I find this interesting, because from my point of view, there is a slight danger that especially in the ELSA context – more so or through the ELSA context - the social sciences obtain their right to exist as appendix of the medical research.”

Against the backdrop of the outlined accounts it can be concluded that asymmetric relationships are experiences as the result of specific power relations. ELSA researchers try to alter this situation by the attempt to achieve symmetry in order to allow for a deliberation at eyelevel. In other words, they negotiate their position within the power relationships they see themselves to be part of. Negotiating expertise Expertise plays a central role in the negotiation of the relationship between ELSA researchers and their colleagues from the life sciences. However, what counts as expertise is not clear at the outset, but it needs to be clarified how it is defined in specific research contexts. Therefore it is interesting to analyse how expertise structures a relationship and how power is distributed along the lines of expertise in a relationship. All these matters are not a priori given, but they need to be negotiated during the research process. Such negotiations can be observed when bioscientists comment on the work of ELSA researchers. Bioscientists attach great importance to the precise presentation of facts, data and numbers etc. When ELSA researchers accept the corrections of bioscientists and physicians of genetic medicine they are not only able to win respect, but they also negotiate expertise at the same time. Here is one example: “I mean, if I had just (1) made my analysis, and handed in the thesis, and then handed it to them. They would just see all the sort of mistake, what they would think of as mistakes (1). Where ..., whereas, when I had their comments, I could sort of, (1) you know, erm, it would make it more robust in the sense that it would be ... (1), they could take it seriously (1). Because to them it really matters if I write three percent or if I write five percent, (1) so, you see, you better get the percentage right, and then they will think, okay, this is serious work, whereas, it may not matter that much for my social science analysis. But, so I think in that way (1) it has ..., the product becomes more robust (1) from this, erm, er, exchange.”

The quoted interviewee frames her experience of having her work read by bioscientists as beneficial for her. It allows her to correct the presentation of scientific facts. As a result of such a procedure, ELSA research is taken more seriously, because professionals of genetic medicine feel taken seriously, too. It is clear that the negotiation of expertise is at the same time a negotiation of the relationship. If ELSA researchers do not get the facts right, they are not taken seriously by professionals of genetic medicine. The quoted interviewee explains that precision with scientific facts has rewarded her with the appreciation of her work. However, at the same time she also

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notes that the analysis of medical practices from a social science perspective is not always well-received. Professionals of genetic medicine feel attacked, by it. This leads the quoted interviewee to conclude that it is particularly important to win the respect through the correct presentation of scientific facts. If one fails to do so, social scientific analysis will also be considered to be faulty. It is interesting to note that according to the quoted interviewee, bioscientists and physicians of genetic medicine hardly react to the content of an argument, but merely to its formal aspects. This observation leads the quoted interviewee to the conclusion that without the correct presentation of scientific facts there is little chance that social scientific arguments will be considered at all. “... it could mean, they could have (1) hated it [laughs]. But, I think the clinicians there, they had great courage, and they, erm, they also, they ... thought it was really, er, fascinating, (1) erm, and then (1) they, you know, got, [...], they’ve corrected me when I had the wrong terms, it not [a], can’t remember, you know, [...], if it’s the [fourth cell], you call it something, and if it’s the sixth cell you’re calling it something else. And, you see, that [quite] sort of, [...] kind of information extremely important, because (1) if another clinician reads it, (1) and I’ve got the term wrong. They’ll not take it seriously, erm, so [and] (1) again that was, erm, a good (1), a good exchange of views, er.”

The process of correction and the demonstration that facts need to be presented in a correct way can be interpreted as a negotiation process through which a hierarchical relationship between social scientists and bioscientists become established out. This observation highlights the performative character of how expertise is established. The interviewee continues to explain how she experiences the hierarchical order of the network she was involved: “Yeah, we were the only social scientists. But we were, sort of when you look at all the participants, we are (1) equal, (1). Then we have the [research] group, then the psychiatrist group, then the ethics group, [...], (1) so, but we were the only social scientists and highly marginalised and the lowest in the hierarchy and all that, erm, (1). But we were invited not as guests but as participants, (1) and as members (1) of the centre, so we did present our work there.”

The quoted extract gives a vivid example of how hierarchical relationships are negotiated and performed via expertise and epistemological discourses. The same hierarchical relation was observed by another interviewee. He explains how he perceived his relationship to bioscientists and physicians of genetic medicine as being performed through demonstrations of competency. The enacting of epistemological boundary work is used to perform specific hierarchical power relations. He notes:

260 | H OW GENES MATTER “During the interview, exactly. Well such short introductions into the basics of human genetics. Well, not beginning right with Gregor Mendel, but a little bit in this style. And erm, you could also notice that these people ignore the guideline quite easily and just give a lecture. Because, as it were, obviously there isn’t – in their eyes - there is no exchange on eyelevel, but this course – exponent of a critical or moaning public – has to be raised to a certain level so that a reasonable conversation becomes possible.”

The demonstration of bioscientific expertise allocates ELSA researchers the role of lay people. This attribution of ignorance was experienced by the quoted interviewee as underrating and misunderstanding of his person and competency. In the presented way, he does not feel acknowledged as fully-fledged scientist. Yet, as the interviewee continues to explain, it is not always disadvantageous to be attributed the role of the ignorant when interacting with professionals of genetic medicine. He explains why he thinks so: “But I then, I repeatedly found that this lay ... erm – which is a little bit offending for oneself – that it can also be functional. Because precisely when you are not interested in technical knowledge, but rather in perspectives, in personal, normative convictions of these clinicians that you can reach this level more likely. Because the other assumes that you don’t know nothing. And then they elaborate a little bit more and explain their standpoints in greater detail or more clearly than they would do if they would assume the other is anyway on the same level or the other effectively shares the standpoint.”

The interviewed ELSA researchers repeatedly explain that they perceived differences regarding epistemology. Epistemological issues are used to perform boundary work, which separates the natural sciences from the social sciences and the humanities. This separation is explained in the following interview extract. Interviewee: “A major issue is also to establish ourselves as somebody who does proper science (1) with different means.” Interviewer: “Aha. Mhm.” Interviewee: “That’s very big. We get it all the time, I get it when I teach medical students. I’ll have to try and, well, more or less convince them that this hierarchy of methods that they have in their heads, where the randomised clinical trial is top of the pops, perhaps shouldn’t be looked at that way. And also that different kinds of doing health research, er, have to adhere to different kinds of principals of doing science. So I try to explain that, when they talk about, (1) erm, reliability and validity, I use different terms, because (1) it comes from a different tradition, and we look at it differently, (1) and that kind of explanation I also have to do when I

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work with doctors, er, when, mhm, PhD students that are supervised, when they do mixed methods research. They struggle with that question.”

It is, of course, possible to interpret the incomprehension of a different epistemological culture and the differences between the problem perspective of social scientists and their colleagues from the humanities as a demonstration of power relations. ELSA researchers are repeatedly challenged to explain their work to their colleagues from the life sciences. This is necessary, especially in co-operative arrangements where the explanation of what ELSA research is all about becomes a proxy for the negotiation of the relationships between the groups involved. The following interviewee recalls how she tried to explain to bioscientists what social scientists actually do. Together with her colleague, she tried to explain her interest in the life sciences and what type of questions social scientists strive to answer. The interviewee experienced this situation as challenging and adds how difficult it is for her to explain her own discipline: “They don’t know (2) what STS is, but [it’s a thing] we have to articulate what [...] it’s quite hard to articulate what, (1) that’s, what I found with [some ...] articulate what we do in STS, which is really quite difficult (2), because it’s vague and it’s er, and it’s context-dependant (1) and it’s not necessarily [kind of] useful in their eyes.”

Explaining the goal of one’s own work implies to establish a relationship and to seek mutual understanding. The attempt to explain one’s own work to bioscientists aims at understanding which is expected to create a communicative basis. The intensity and the intended duration of the desired relationship define the efforts necessary to achieve mutual understanding. The following interviewee explains another dimension of how expertise is negotiated. She states that at first she and her colleague were perceived as ethicists. The quoted interviewee interprets ethics as an accepted type of expertise in the given context. It was, however, necessary, to establish her identity as social scientists. She explains: “But I think that, at first our role wasn’t questioned, because it was assumed that we would do the ethics, (2) right. So that’s why, (1) it was just assumed that, our role was given to us by the scientists, right, and there was an assumption about what ... So it’s been a period of time of turning up to meetings, and not necessarily standing up and giving lectures about ethics, about saying: ‘Oh, well, you know, actually, we’re, (1) yes, we’re social scientists.’”

The quoted extract shows who ELSA researchers are in a specific context and what their expertise as social scientists is actually all about is not a priori given. By com-

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parison, the role of ethicists is presented to be less ambiguously perceived. The negotiation of one’s own expertise is quite important, since it involves the clarification of conceptual standpoints. The interviewee of the previously quoted extract tries to demarcate herself from the U.S.-American ELSI model. She does not want to be mistaken for somebody who follows an approach she disapproves of. “The network that I’m involved in, erm, draws on all participant social scientists round the [... network], by and large we’re STS researchers. So they’re saying: ‘Oh, well, we’re STS researchers.’ People saying: ‘What’s that?’ You know? And even getting them to use the label STS, rather than ELSI for example, so all these kinds of things that are just slow parts of negotiating what your role might be. Erm, unlike most of the other networks we actually did have a little bit of say in writing the proposal, not in what the ... (1), not in the topics. So, this idea of standards was not, (1) that wasn’t negotiable. But (1) in order to write (1) the component of the bid, that related to ..., well, what is it that social scientists could do around this topic, we had a say in writing that, which most of the networks didn’t, (1) you know. That wasn’t even granted to them. And interestingly, when the bids went in, (1) because most of the bids (1) didn’t contain much (1) attention to ELSI, they wrote back, the research councils wrote back and said: ‘We want a separate one-page justification of the ELSI activities.’ Erm, so, I wrote that, I wrote back for our particular bid and said: ‘We don’t intend to carry out separate activities.’ Because, you know, it’s just the way that institutionally it’s framed was that, you know, that the network will happen and there will be a separate stream of ELSI activities. So, you know, and, you have to write a separate page and you have to, you know, and ... so, you know, kind of writing back and saying: ‘Well, we don’t see ourselves as carrying out an entirely distinct stream of activities (1) in the first instance’, erm, (1) you know, (1) felt a bit rebellious, but, (2) you know, it was kind of in response to how it’s all been set up, I think.

Apart from the boundary work between ELSI versus STS the quoted extract demonstrates how power relations are negotiated in interdisciplinary networks. Bioscientists define what is being done in a given research proposal, and social scientists are expected to follow that course. The third element of this account raises questions about whether the contribution of ELSA researchers is a separate undertaking, an add-on component or an integral element of bioscientific research. The interviewee quoted above is in favour of the latter form of engagement. She states that in the given case, the integrated co-operation even contradicted the intention of the respective research programme. According to her, the call for proposals suggested add-on co-operations that allow delegating ethical issues to somebody who feels competent in this field. This extract therefore demonstrates that the negotiations of working relationships are always pre-structured by the institutional and organisational arrangements in which they take place.

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BETWEEN AUTONOMY AND UTILITY

Autonomy It is a central narrative of the analysed interviews to claim autonomy for one’s own practice as ELSA researcher. Autonomy is therefore an important element in the negotiation of the relationship between professionals of genetic medicine and ELSA researchers. Yet, this observation does not equally apply to all ELSA researchers, but it is relevant especially for those who constitute themselves via scientific discourses of their own discipline (scholars) and those who define their task as the organisation and support of deliberative processes dealing with ethical, legal and social aspects of the life sciences (facilitators). In the following section, I discuss how ELSA researchers draw on the narrative of autonomy when they negotiate their relationship with those whose work they study. In particular, I focus on the organisational conditions under which social scientists and their colleagues from the humanities investigate ethical, legal, and social aspects of genetic medicine. The institutional embedding of ELSA researchers is crucially important in this regard. The reputation of the employer of ELSA researchers can support autonomy claims when they are known as independent institutions. However, employers can also jeopardise autonomy claims, for instance when they hire ELSA researchers to protect their interests (as it may be the case when bioscientific of medical institutions employ “embedded social scientist”). Process Ownership The following extract shows how ELSA researchers claim autonomy for their work through the characterisation of the institution they work for. The interviewee states at the beginning of the conversation: “A ministry has different sub-departments in, er, with specific areas, and ... they serve the government and the minister directly, we’re not like that, we’re ... completely independent.”

In this extract autonomy is constructed as independence in relation to a very particular group of actors. The interviewee claims independence of political administration and their directives and assignments. As a facilitator of deliberative processes it is crucially important for this interviewee to present his own institutional autonomy and emphasise the possibility to choose the topics of participatory deliberation independently. An important aspect of the autonomy claim is the attempt to establish authority over the shaping of the process of deliberation (or scientific scrutiny). In short, ELSA researchers who seek autonomy strive for “process ownership”. Process ownership implies especially the authority to choose the discussed topic, to decide the interactive format, to design the selection process of the participants in a lay-panel and the

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ways in which they scientific experts are consulted during the deliberation. Consequently, the claim of process ownership entails the authority to assign specific roles to medical specialists, bio-ethicists, economists, civil servants and so on when they are invited to contribute to deliberative processes with their expertise. It is interesting to note that autonomy is not conceptualised as the exclusion of external experts or stakeholders who represent particular interests. On the contrary, the integration of expertise and different viewpoints is considered to be indispensable for deliberative processes. The point is rather independence in the shaping of the process of deliberation, which implies the authority to decide how experts and stakeholders are chosen and integrated. However, facilitation does not only consist of the organisation of deliberative processes. Another form is the provision of expertise for decision makers. Many countries have installed advisory boards (e.g. offices of technology assessment, ethical councils, etc.) with precisely this task. These advisory boards are commissioned to write reports on specific issues in order to provide expertise for policy making. Those interviewees who worked for such institutions typically conceptualised themselves as facilitators emphasising that it is not their job to make decisions, but to provide the background knowledge on the basis of which decisions can be made. For this purpose facilitators working on such reports frequently consult scientific experts and stakeholders to integrate their point of view. It is important to note that the reputation as independent and unbiased institution is essential for such type of advisory boards. Their credibility depends on the fact that they are known as a neutral actor that does not take sides but outlines all the perspectives on a given issue. It is precisely for this reason that ELSA researchers who work as facilitators for advisory boards seek process ownership for their work. First and foremost they do so to protect their reputation as an independent actor, which is the indispensable precondition for their type of work. Financial independence Research funding is an important aspect of the autonomy narrative. In this regard, autonomy means the independence of those who fund scientific research. Such autonomy claims are equally made in relation to public funding agencies as well as to private actors who provide resources for research. In the following extract, the quoted interviewee articulates her desire for autonomy. Her claim is framed as a reaction to a tendency she observes that research increasingly depends on those who fund it, which implies for this interviewee the loss of autonomy. I asked the interviewee how she wanted her field to develop in the future. She answered: Interviewee: Oh, my greatest wish would be that research would again become less dependent on ... private money, (1) erm, there are still (1) possibilities for applying for, er, like, erm, (1)

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er, publicly founded resear..., funded research, but there is more and more money being channelled from the private sector into the universities, and I think that’s a very, very dangerous development, (19 lines omitted) Interviewer: And that filters through to the, erm, social sciences too? Interviewee: Yeah, (1) I think it does, I think it does, (1) we all run to where the money is because that’s how we can survive as academics. If I don’t get money so that I can buy myself a little time for research, I drown in teaching and administrative things, er, and my time for doing research will be so little that it’s scary, mhm. Interviewer: Mhm. Interviewee: So I have to get some money so that I can get somebody else to do some of my teaching, (1) er, in order to create space to do research, and especially at a medical faculty that is very, very prominent, and I think that’s a problem, so that would be my wish.

At the end of the extract the interviewee frames her work arrangement as an “embedded social scientist” who is employed at a medical faculty. With that, she explains that, in her position, she needs to demonstrate that her contribution as a researcher is useful for the medical sciences and not just for her own scientific community. The embedding into a medical faculty is also used to describe a development that endangers scholarly autonomy through an increasing dependence on external funding from industry. In order to obtain such resources it is necessary for ELSA researchers to engage in collaborative arrangements with the medical sciences. Also publicly funded research programmes stimulate co-operation between professionals of genetic medicine and their colleagues from the social scientists and the humanities. The concrete ways in which such desired co-operation is actually put into practice requires intensive negotiations between the actors involved. Service provision Collaborative arrangements are subject to many different, often contradicting expectations. Therefore, it is necessary to negotiate what the actors involved seek to achieve with their engagement in collaborative relationships. These negotiations imply a potential for conflicts especially in situations where bioscientists and physicians expect ELSA researchers to serve them with science communication tasks. Conflicts arise when such assignments are presented to ELSA researchers who seek collaboration in order to carry out research in their own right.

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The following extract is an example of an ELSA researcher who feels enrolled as a service provider and confronted with the expectation to take on tasks he does not consider as research, but as administration. This assignment compromises his career trajectory as social scientists. He explains how he perceives his situation: “So it’s taken a while to kind of break down a few barriers of: ‘This is who I am. (1) I am a researcher, not an administrator. That’s a website, I’ve helped with it.’ But I had this real crisis of confidence and identity and (1) thank God I still have (institution), I still have my STS community that knew what I did and we’ve slowly (1) erm, started knocking down a few (2) bricks (1) to get in there: ‘This is what I do and this is what we should do’ erm.’

This interviewee wants to engage into collaboration with medical scientists as a researcher. He rejects the expectation to serve as an administrator. He frames his contribution to a website as a favour and expects a trade-off in return. The extract shows that collaboration requires negotiation and the willingness to agree on compromises. It also shows that the institutional backup of this interviewee strengthened his position in these negotiations, which helped him to come closer to his goal to carry out ELSA research. Constellations in which ELSA researchers aim to carry out more research while being enrolled to assist with administrative and organisational services are experienced as contentious. Interviewees who work under such circumstances repeatedly expressed their difficulties to abandon their role as a service provider in order to become a researcher. Such attempts to chance the position in a given network require ELSA researchers to re-constitute their own role. However, this is never just a matter of self-definition, but it is always necessary to negotiate one’s own role with the other actors of the network. From this point of view, also autonomy is a claim that needs to be negotiated and can only be achieved if the environment is responsive to such attempts. Constructing neutrality The construction of an autonomous status is an important element for certain types of ELSA research. Especially for those who work as facilitators their own autonomy status is necessary for their task. In these cases autonomy means equidistance to all other actors of the network. In other words, neutrality is a necessary requirement for facilitators in order to become a meaningful actor in the bioscientific network. Neutrality and autonomy are necessary for ELSA researchers whose task it is to provide expertise for decision making processes. Without the construction of neutrality ELSA researchers could not the credibility they need for this task. Against this backdrop, autonomy and neutrality can be interpreted as construction, designed for a particular purpose and used for their function to constitute ELSA researchers as actors in such a way that they their actions resonate with the network goals and agendas.

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The following extract demonstrates how important it is for ELSA researchers to establish their reputation as (politically) neutral and impartial actors. The fact that the institution for which the interviewee works was perceived as rational is decisive for its existence. In other words for this interviewee it is important not to be associated with a particular political camp. He explains: “Yes, politically neutral. So we ... So if you were just an arbiter of good taste, then people should be allowed to decide for them self instead of having councils or other organs, er, coming up with answers to arbiter of taste questions. Because, you know, that was a right wing, er, government, and they were very liberal. (1) So they said: ‘well, the people should decide for them self which kind of things [...] like. If [we are] the subjective matters concerning arbiters, (1) er, evaluations of taste, and the ... (1) I think that a lot of persons (1) in the (organisation), erm, (1) were afraid that we would be closed. (2) I was not afraid of that, (1) because I think, it would simply be too controversial, (1) erm. And I remember that one of the ministers, er, (3) said in a [laughs] ... in the television that, well, the (organisation), they’re not arbiters of good taste because (1) there’s some kind of truth and rationality involved in their work. (2) So that closed the discussion, we were not [...], erm, we were not closed.”

The interviewee makes an interesting distinction between what he phrases as “arbiter of good taste” and “truth and rationality”. This distinction makes all the difference, because it draws a boundary between justifiable and unjustifiable forms of ELSA research. The idiom “arbiter of good taste” was used as a criticism of ELSA expertise. The implicit argument claims that all ethical assessment would be nothing more than a matter of taste, i.e. of individual preferences. Consequently, it is implied that ethical statements are subjective and unscientific. Undoubtedly this is an attack of all those who engage in the scrutiny of ethical aspects of genetic medicine by framing it as irrational speculation which is nothing more than a matter of personal preferences. The interviewee gives an account of a fundamental attack on the integrity and meaningfulness of the scrutiny of ethical issues, which consequently calls into question that institutions deal with ethical, legal, and social aspects of the life sciences, should receive any public funding. All what is needed in this concern is to make sure that everybody can decide such individual issues for him- or herself. Framing ethical issues as merely personal matters goes along with the demand to stop funding such matters with public resources. The counter argument to the narrated attack aims to demonstrate that dealing with ethical, legal, and social issues requires more than just individual judgements. What is needed is the provision of expertise, data and evidence as well as the assessment and clarification of arguments. In the extract this task is summarised with the term “rationality”. It is the contribution that is necessary to enhance the rationality in the judgement of ethical issues that became accepted as a justification of the existence of

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the institution for which the quoted interviewee works. The extract gives a vivid example of how ELSA researchers negotiate who they are in a given network and how important it is to constitute oneself in a way that resonates with the network goals. Neutrality and impartiality proved to be decisive for this interviewee in order to establish himself as an accepted actor of the bioscientific network. Facilitating with expertise Assisting decision making processes with expertise puts ELSA researchers in a complex position. If they were suspected to take sides they would lose their credibility. The solution to this problem is the establishment of a strict boundary between the provision of expertise and the actual decision making. Performing such type of boundary work allows ELSA researchers to ground their own role in neutrality. In this context, facilitation means to assist with the provision of background knowledge and the assessment of arguments. Contributing with such facilitation of decision making processes allows ELSA researchers to become appreciated actors of their networks. Deviating from the neutral position, however, is not permissible in such arrangements. Being explained the norms of the network in which facilitators work, I asked my interviewees whether there was some space to manoeuvre in working arrangements such as the described. The previously quoted interviewee answers that this is possible, since he is in dialogue with those who are supposed to make decisions or advance recommendations. These dialogues allow controversial discussions and the presentation of counter-arguments. Even though the final decision is beyond their power, the interviewee explains that it is nevertheless possible to raise issues in order to contribute to the deliberation. Up to a certain extent it is possible to “deviate” from the neutral role. As long as the power to decide is not called into question such interventions are tolerated in the environment in which the quoted interviewee works. The following extract shows how the aforementioned boundary between decision making and the provision of arguments is drawn: Interviewee: “I think one thing is important here, and it is that in the, er, (1) self-understanding of the (organisation), (1) er, the politicians should not look very much to the, er, recommendations of the, er, (organisation), (1) but more to the arguments that are (1) described. So they don’t look at themselves as (1) someone giving advice that should be followed, of course that’s part of it, but they look more to themselves, er, at themselves as an institution that come up with the relevant arguments, so to speak.” Interviewer: “So there is a spectrum (1) of ...” Interviewee: “Yes, and so that they give the, erm, (2) the politicians the instruments (1) to create an attitude for themselves so to speak, to have an opinion themselves. So they should more look

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at those instruments, namely the arguments and ways of looking at things (1) than, er, on the specific, er ...”

The extract gives an account of the way in which the interviewee negotiates his own role with the users of his work. Establishing who is responsible for the provision of arguments and who is responsible for decision making allows the quoted interviewee to constitute himself as an actor who makes a valuable contribution. Again neutrality is an important aspect of this process, which plays out as the representation of the entire spectrum of the different viewpoints regarding a particular issue. It is important to outline controversial perspectives next to each other without favouring one over the other. Interviewee: “And they don’t ... No. So we have very often (1) a lot of different, er, attitudes represented, (1) and we are almost, (1) er, or they are almost never in agreement, I think the only thing they have been agreement, in agreement about is euthanasia. (1) So, well, (1) so there are (1) different, sometimes three or four attitudes, and, er, are different.” Interviewer: “And they would all stand next to each other?” Interviewee: “Yes.”

The presentation of all the positions and arguments next to each other is how neutrality is constructed in the described arrangement. It is important that all the different perspectives are included in order to balance individual perspectives and partial interests. Neutrality through the representation of the entire spectrum is constitutive for the deliberation of ethical issues if it aims to go beyond the articulation of merely individual preferences. The quoted interviewee explains an approach to inform decision making processes that is grounded in the provision of a knowledge basis which comprises the entire spectrum of all perspectives on the given issue. Sheila Jasanoff has identified precisely this approach as a specific form of “civic epistemology” (cf. Jasanoff 2005). Her point is that, according to this approach, the facilitators of the knowledge basis for collective decision making owe their credibility to the fact that they demonstrate the ability to represent all different viewpoints. Once facilitators (usually an advisory board) have established the reputation to be capable to do so, they are no longer accessible for outsiders. This closure is even important to demonstrate that the every attempt to disturb the carefully balanced expertise is prevented. Jasanoff has described this form of knowledge production as “pure reasoning”. Adding to this line of argument it can be noted that the facilitator of the expertise in question gains autonomy. In other words, I argue that the careful construction of the reputation as neutral and impartial provider of expertise constitutes an actor who can maintain a position that legitimately rejects all attempts to

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influence the scrutiny of ethical, legal, and social issues of genetic medicine or other new technologies. From this point of view, autonomy is not the starting point of ELSA research, but it is the product of processes through which the actors involved negotiate who they are and how they can act in a given social context. Separating ethics from politics With the presented analysis, I aim to demonstrate that the ways in which ELSA researchers constitute themselves needs to be negotiated with the other actors of the given social context. Only through these negotiations actors mutually determine who they are and how they can act in the network they are integrated. This argument implies, however, that if the configuration of the given context changes particular forms of action may no longer be appreciated. The interviewee quoted above, raises precisely these issue. He explains his thoughts about the circumstances which would no longer allow him to practice his current job. The considerations of this interviewee indicate a high degree of reflexivity. He is very well aware of possibilities to act and how much these possibilities depend on the constellations in which he is currently embedded. He states: “So I think that the, that if (1) bioethical matters (1) will be integrated into party politics, (1) and then, the (organisation), erm, might (1) die one day (1) but that will not be before I’m retired [laughs].”

The quoted interviewee foresees a development in which it is increasingly impossible to separate the deliberation of ethical issues from the sphere of politics. With this statement, he implies that he considers the mentioned separation as a precondition of his job. The way in which he constitutes himself as an actor depends on a specific constellation of the network in which the deliberation of ethical issues is not part of party politics. The extent to which this arrangement changes also changes the conditions that allow the interviewee to constitute himself as facilitator of ethical expertise. He continues to explain: “Yes, I think so, and I think that, er, (1) the idea about separating, er, ethics and politics (1) is, erm, in a way, erm, being challenged, challenged in the Parliament. (1) Well, the last, er, two or three times I’ve been, er, (1) seeing some of the members of the Parliament, they have themselves said that now we want to (1) establish, er, (1) bioethical discussions ourselves here in, er, (in political party), (1) so that that will be a part of our own discussion to a higher degree than it is now, (1) so they have themselves, (1) er, in the Parliament, (1) they have themselves began, er, begun to challenge that distinction between bioethics or ethics and politics. (1) And I think that they will challenge that (1) more and more in the years to come.”

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The interviewee draws a scenario in which the deliberation of ethical issues becomes politicised. In a network that changes in the described way, it is increasingly difficult to claim the position of a neutral facilitator who is able to provide a basis for political decision making through the presentation of all the different perspectives in a wellbalanced form. The moment ethical issues are taken to the centre of political dispute there is no longer a need for impartial experts. Instead, experts are needed who can argue for a certain standpoint. Under these circumstances, expertise is no longer grounded in neutrality. Neither will it claim autonomy, nor will it be able to do so. Utility In addition to autonomy and independence, the interviewed ELSA researchers use another important narrative when describing the ways in which they negotiate their relationship with bioscientists and physicians of genetic medicine. These narratives focus on utility. Especially ELSA researchers who seek to collaborate with bioscientists and physicians of genetic medicine draw on such narratives of utility. To a certain extent it can be argued that all ELSA researchers are challenged to prove the utility of their work. However, it is those who frame their work in terms of collaboration who make utility to a central programmatic feature of ELSA research. Furthermore, also advocates – that is ELSA researchers who take a particular normative standpoint as the starting point of their work – draw on discourses of utility when they negotiate their relationships with those they interact with during their work. In the latter case, it is typically aspects of utility that are intended to benefit the clientele advocates share their values with. Utility for clientele and society To begin with, I quote an interviewee who speaks about potential benefits of his work. He explains how his work is being received and what type of utility is expected of him. He notes: “If I talk in (country) about access and benefit sharing, a topic which you don’t know much about yet, then they are interested in whether I can in the end supply them with advice, how to frame their policies, how to make it institutional policies, legal contracts maybe even. Well, I am not doing the research from a legal standpoint. I’m doing my research from an ethical standpoint. So I come with outcomes like what the other person is doing is not fair or something. Well they ... I am pretty sure that some will be a bit disappointed that I do not come up with practical advice which they can really implement. Because my research was – for them at least - on a different level. I mean, my research still giving advice and recommendation from my ethical point of view, but then I was focusing on really international policy making, because already on that level things went wrong.”

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The quoted interviewee explains that he sees himself confronted with a specific utility expectation. However, he feels, he cannot fulfil this expectation. He concludes that this fact may potentially lead to disappointment. With this statement, the interviewee clearly shows that he reflects about the possible effects of this disappointment on his relationship to the persons with whom he interacts over the course of his research. Even though this interviewee declares that his work has no direct utility for his informants, it is nevertheless important for him that there is at least an indirect benefit for his clientele. The work of this interviewee is driven by a desire to change the current state of affairs towards a more just use of intellectual property of bioscientific innovations. It is precisely this more just use of intellectual property that should eventually benefit those people the quoted interviewee aims to build a relationship with. The utility motive of his own work is crucially important for the quoted interviewee. This concern does not only constitute him as an ELSA researcher, but it is also a central element of his relationship to the actors in the context of his research. Proceeding to outline his understanding of utility, he explains that, for him, utility consists in the development of societal benefit. He notes: “The idea that you have to valorise, make value, then I would of course say immediately social value, which can be economic, but it should be social value. You do science for social - I think that’s a very, very important topic.”

The quoted interviewee has a very specific understanding of what utility actually is. His interpretation is consistent with the values he made the starting point of his research activities (i.e. to contribute to a more just use of intellectual property). Benefit as programme There are also different interpretations of utility. I contrast the previous conception from the perspective of another interviewee. This ELSA researcher talks about an economically framed utility discourse. The interviewee regards economic utility as a major reason why bioscientific research is being funded. He frames ELSA research as part of the same economic paradigm in which bioscientific research is brought into being. He explains: “Knowledge is our capital and that is something where we can distinguish ourselves from the threshold or developing countries, from the others, in order to be simply competitive. And now we have got the economic crisis. And everything else you can cut, but not research. Don’t touch the universities and research. And what they actually mean is actually natural science and medicine. And social sciences and humanities, they are not as important. And we succeeded with the ELSA programme to establish that it is something that needs social scientific reflexion; biology and red biotechnology, a medical reflexion. And that is that what is somehow internationally and nationally grounded that you need that. And insofar it is easier for us as social

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scientists, because we are appended to this technology, to this techno and scientific complex. Because everybody believes that this is an important area, science and research. And to reflect on that – that is in fact seen to be less important – but you can somehow sell it that it is important.”

Integrating the life sciences into a general societal paradigm of knowledge economy this interviewee frames bioscientific research as a source of societal, i.e. economic utility. According this interviewee, ELSA research is separated from this type of objectification. The prime task of ELSA is not to develop utility, but the carry out reflection. With this distinction, he implicitly defines the relationship between ELSA researchers and the actors they interact with. He distinguishes between professionals of genetic medicine and ELSA researchers. Although not explicitly mentioned, there is a third relevant group of actors. It consists of those who define the framework conditions and who fund scientific research. The quoted interviewee positions himself in relation to the constellation of actors by claiming a meta-position from which he aims to carry out reflexive analysis. This positioning can be observed in the following statement. “What interests me in that is rather a kind of critical approach as it were. Not for the sake of criticality, but simply to see ... I mean these salutary promises of science, this I find totally interesting. To question that and to see why, why is that so? Why do people believe for instance ... I mean that was so exciting?”

The presentation as expressed in the quoted extract, shows a specific form of how relationships are being negotiated. The interviewee does not aim to contribute to the benefit of a particular group of actors or to fulfil a specific benefit expectation, but he calls the benefit expectation itself into question and tries to make it to the object of scholarly reflection. From this point of view, the expectation of societal (i.e. especially economic) utility becomes an outer demand. Funding agencies are identified as the prime source of such demands. When framed in such a way social scientists and their colleagues from the humanities encounter professionals of genetic medicine under circumstances that are shaped by the paradigm of utility expectation. ELSA researchers observe a trend that increasingly demands social scientists and their colleagues from the humanities to contribute to economic growth. The following interviewee notes in this regard: “Oh yes. (1) It’s a major trend at the moment, I would say, in the health care sector, but also in the private sphere, (1) er, in (country), er, (1)... I’m still wondering where it all came from. But all the major funds, both the private and the public funds in (country), (1) most of them have some kind of innovation or user inno..., user driven innovation or something. We have to (1) invent new technologies and health care because we, we can’t afford not to. That’s what

274 | H OW GENES MATTER everybody says, hospital directors that I’ve heard talk about it: ‘we need to get on the wagon’, as they say, ‘we need to jump on the train now, otherwise the technological train will have, (1) erm,’ you know, erm, ‘overtaken us everywhere else in the world.’ So, we are very, very, very much into developing technologies.

Helping to design new technologies in a way that meets the needs of the users is a new task for social scientists. The organisation of processes that allows for integration the needs of users is expected to contribute to increase societal utility of science and technology. It is true that this model has roots in user driven bottom-up initiatives. However, it is also correct to note that meanwhile the integration of user perspectives has been put on the agenda by science policy actors. As the interviewee describes user involvement has become a programmatic feature of top-down initiatives, too. In the extract quoted below, another interviewee addresses the demands of research funding agencies. In this case, it is the demand that social scientists and their colleagues from the humanities should be integrated in bioscientific research projects. The interviewee explains that she was invited to join a research cooperation with bioscientists. “Yeah, I mean, yeah, [...] for me it’s ... like qualitatively different, it’s a really (2) very different kind of involvement (1) erm. I don’t really know why. I think (2), I think it’s because there’s a kind of need for social [scientists] in synthetic biology, so (1) we have been invited (1) to [...] join their research proposals, invited to their group, I’ve never had that before.”

The concrete form and content of the proposed cooperation were not defined when the offer was made. In the mentioned research context, the interviewee was able to negotiate that with the other people involved. The interviewee describes this fact as a favourable basis on which a relationship can be developed that is beneficial for all participants. In other words, for her, the development of mutual utility is the goal of such cooperative relationships. Utility in mutual exchange The extract above is also interesting because the interviewee makes a distinction to all other experiences she has made previously. She also uses her new engagement as a counter model to contrast her own work from the US-American ELSI model. She emphasises that the qualitative difference to her previous experiences is that she feels perceived as a partner who is met at eye level. “Because it’s a very interdisciplinary field of biology, [...] was never that kind of [co-option] (1) almost of the social scientists [you know]: ‘We need you in our proposal. You have to come, and you have to (1) take the [...], do the ELSI and do the ethics.’ (1) And so it ... For me it was ... No, it was (1), it was much more standard (1) social science. [Like I say ...], it was much

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more, [in a way] what this is why this paper (3), because all my [...] biology work, I went [on ...]. I wrote papers, [but then] it’s certainly my relationship with the [...] biology community is completely different. (1) It’s more like a peer (1) relationship, and so (2). Although, I am [starting to interview them now]. I was just [...] thrown into this (3) doing it in a completely different way.”

The quoted interviewee reports about another dimension of utility. With that, she adds to what was previously described as utility for a specific clientele or as societal utility. She talks about the benefit she gains herself from entering the mentioned collaborative relationship. As she explains, collaboration creates access to a bioscientific research field, which for her as a social scientist is of major importance. The interviewee notes: “We get very, very good access (2) to lots of, erm, (1) not just to them, but to their thoughts and to their ... (1) I mean, erm, (2) I was invited to (1) a meeting in (place) which was (1) amazing. It’s like all the best [biologists in the world], erm. [But, er, you see], you get access so to say, you get (1) a way of doing your research.”

The quoted interviewee goes on to explain that the mentioned research collaboration does not only allow her to benefit, but she also realises that utility is expected from her. It was already mentioned that conflicts may arise if there is a difference between these two benefit expectations. In the positive case, this situation can be resolved through a trade-off of the respective utility aspects creating benefits for both sides. However, divergent utility expectations contain a certain conflict potential. In the negative case, no balance of utility can be achieved, which means that the entered collaboration is not perceived as beneficial. The described form of benefit-economy is part of collaborative relationships. The more transparent the respective utility expectations are and the better they are negotiated the collaboration can fruitfully develop. Offering utility can be interpreted as offering a relationship on the basis of which collaboration can fruitfully develop. There are two specific utility aspects ELSA researchers can offer to their colleagues from the life sciences. One strategy is to present oneself as an attractive collaboration partner is to offer the gain of complementary expertise. The second strategy is more instrumental and consists in the opportunity to delegate ethical and social issues to a collaboration partner without needing to deal with it henceforth. The benefit of complementary expertise One interviewee, who works at a medical faculty, describes her experiences of working together with medical colleagues. She emphasises that her education allows her to contribute with complementary expertise physicians do not have themselves. This

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is a benefit for medical specialists, which the interviewee considers to be sought after. The interviewee points out, that physicians have a need for such complementary expertise. Also in this regard, the utility of expertise provided by social scientists and their colleagues from the humanities is presented as a trading object in the relationship to bioscientists and physicians of genetic medicine. Consequently complementary expertise is perceived as an essential element of negotiation processes. A specific form of the utility discourse regarding ELSA research aims at the production of results that are immediately useful for bioscientists and physicians of genetic medicine. What exactly relevance is, and how it turns out to be beneficial, is not always clearly defined. In this undefined form, there is more room for negotiating utility demands. The following interviewee explains: “I don’t know whether you also have the experience, but it’s quite problematic when you do this as a research project, because in an ELSA context, because ELSA has such a strong idea of being relevant, at least here in the (country), but maybe I think also in other places, of being relevant or ... and to politically relevant, relevant to science, relevant to the clinic, that I think that in such a relevance-oriented environment, more reflexive projects can raise some - yeah irritation.”

As explained in this extract, aiming to produce relevant ELSA research (that produces societal utility) is not always perceived to be unproblematic. This is especially the case if ELSA researchers strive to be critical and reflexive at the same time. The point is that ELSA researchers need to develop their own position, and they need to integrate the described contradictions. They are encouraged to produce relevant results, when at the same time they aim to meet their own standards of reflexivity and criticality. It is important to understand this situation as a need to make decisions in a dilemmatic situation. The previously quoted interviewee continues to state: “I have always been constructive but critical, but I have find fertile soil here. So, that makes my position and so that also ... And I think that’s also interesting for you to talk to (name). He has always said: ‘Well it’s impossible for me to do what they want me to do, because they don’t let me in. I ... whatever my results are, are not relevant.’ That is what he has heard a lot from people here. Also from me, it was hard to see how his analysis could be relevant, but he ... And then he said: “Yeah but that’s because I’m just doing research, but there is no opportunity for me to affect policy or to do things with it.’”

This account is a reported description of how ELSA researchers struggle to make their work relevant in relation to utility demands when they conceptualise their own work in scholarly terms that aims at reflection and disciplinary research agendas.

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Tick-box ethics A rather different form to negotiate utility aspects in collaborative relationships is what I call “tick-box ethics”. With this expression, I refer to a strategy bioscientists and physicians of genetic medicine apply in order to get ethics out of the way. The purpose of tick-box ethics is to design a work package that meets all the requested ethical requests of a given call for projects and allows applicants to fulfil the formal requirements. Most of the time there is no genuine interest in ethical issues. For this reason, the most pragmatic solution seems to be a delegation of the dealing with ethical issues to associated project partners who are then expected to take care of these matters. The following interviewee explains this arrangement: “They don’t know. That means, erm, (1) I think [... they] don’t quite know what they want. But I just know (2) a lot of the things. They just know they have to have a social scientist. So you just tick a box, so once you’re there, they don’t really care what you do. (1) And also, I mean, (2) like they want (1) an ethicist to give a talk. They invite you to talk that’s got nothing to do with ethics, (2) [...], they don’t care. (1) They just like, they are fine you know. They’re happy as long as it’s, like: ‘Oh yeah, we had a non-scientist.’ (2) So I think, they may not have very clear ideas about what they want of us. So (1) I mean, because (3), yeah, it would be problematic if I [was] going to be promoting [...], I think that would be very problematic, and I think, it may happen.”

Also, another interviewee talks about her impression that she felt invited for utility purposes in order to take over the ethics part of a project. Bioscientists and physicians of genetic medicine are well aware of the strategic importance of collaborations with social scientists and their colleagues from the life sciences. They know that the inclusion of ethical aspects into their own research projects will make these more “robust”, since funding providers increasingly request the integration of ethical, legal, and social aspects. This is also expressed in another interview: “Well, yes, and I think in some way that's being very interesting, because in some ways too it's a ... learning process, so, the reason that we were involved in the network to begin with was because the funding councils required social scientists to be involved, so ...”

The following extract demonstrates the significance of the position from which ELSA researchers enter a negotiation of their relationship to the actors in the field. Clearly it makes a difference whether ELSA researchers become enrolled as a service provider or if they can pursue their own research interest in the given collaboration. The interviewee quoted below recalls a collaboration in which her position allowed her to negotiate. The interviewee explains that the co-operation started with an invitation that framed her work as an add-on type of ELSA-component. The interviewee interprets this approach as an expression of how professionals of genetic medicine rated

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the importance of work, it is regarded as something that can be said in three sentences. The interviewee states: “We are having this deadline in two weeks, can you just write three sentences about ethics and pharmacogenomics and get us your CV, then you’ll, (1) we’ll put you in, (1) erm, [laughs], and, (1) so, (1) and it was, (1) so we sort of, it was a, sort of, a gift given to us. (1) Alright, the money is there, what ... shall we do? [laughs]”

The interviewee explains that she was invited together with her colleague. The collaboration led to a conflict, because she did not comply with the framing of an addon type of ELSA research, but carry out research in its own right. According to the interviewee it was the expectation of the bioscientists to delegate ELSA issues to social scientists so that they did not need to deal with it themselves. Conflicts arise when ELSA researchers try to make more of such arrangements than the compliance with such type of “tick-box ethics”.

13.5 C OMMON

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Concluding the analysis of how ELSA researchers negotiate their relationship to the actors in the field of their research, I would like to discuss the motives why co-operative relationships are sought. For ELSA researchers, it is decisive to develop a working relationship with those whose work they strive to study. Generally it can be said that once co-operative relationships become established both professionals of genetic medicine and their colleagues from the social sciences and the humanities mostly apply a pragmatic approach to shape the relationship to the mutual benefit. Against this background, the actors involved seek to establish a “common ground”. Peter Galison has described these attempts and the actual negotiations as a “trading zone” (Galison 1999[1997]). The goal of the activities in this area is to develop an agenda that defines the co-operation. For the participating ELSA researchers, the access to the field is an obligatory passage point (OPP). In order to acquire the desired field access, ELSA researchers offer professionals of genetic medicine a benefit as a trade-off. The analysed interviews demonstrate that co-operative relationships are likely to become problematic if no such trade-off can be developed. Science policy frameworks play an important role in this regard. It is increasingly important for bioscientists and physicians of genetic medicine to integrate perspectives from the social sciences and the humanities into their work. The moment such co-operations become funding requirements, they become desirable for bioscientific research. The fact that co-operations are often initiated from the top down, is certainly an important reason for establishing such co-operative relationships. However, the

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actual way in which they are shaped and used remains the object of negotiation processes. Of course, it is not always possible for all actors to be equally satisfied with the results of how co-operative relationships are negotiated. Co-operative relationships comprise a certain potential for conflict especially when contradicting expectations cannot be equally fulfilled at the same time. One interviewee explains a situation where a double agenda is being pursued which he experiences as inner conflict. He describes this situation as follows: “I suppose, but yes, it then leads to time issues, identity issues, (1) and also (2) for me: ‘Who is my master?’ You know: ‘Who do I (2) ... Who’s my line manager?’ I have got a lot of different people who, like my mentor, my (1) (organisation 1) line manager, my (organisation 2) line manager, the (organisation 2) boss. There’s a lot of different people you have to please. And I think that is [...] arena of public engagement, you end up having to please a lot of different people. And then when you’re doing research, you have to please a lot of different people as well, because (1) you please your department by writing a research paper, (1) and yet, you know. So (2) you’re actually spread rather thinly, I think, (1) because there’s not that many people working in the area as well (1) whose jobs (1) have a specific (1) part or, you know, [...] part of their job is public engagement. (1) And what I’d like to see happen (1) is that (1) you help (1) run an event and organise it and bring together people, but those ... bring together people do a lot of the work (1) as well, but at the moment I’m finding that I’m doing a lot of the work.”

The quoted interviewee repeatedly explains how he feels confronted with the expectation to serve an agenda that essentially aims at the popularisation of the research area of his employer. In such an arrangement, in which he is recruited as a service provider, he only discovers limited common ground with the goals and needs of bioscientific actors. However, ELSA researchers also report about other experiences with co-operative arrangements, which I will outline in the following section. Common problem perspectives One possibility to develop a common ground was found in the goal to develop a better understanding of patient perspectives. When this is agreed as a joint interest, experts of genetic medicine appreciate the complementary expertise of social scientists and their colleagues from the humanities. For physicians the doctor-patient relationship is a challenging problem. Any support and stimulation from ELSA research that helps them to improve this relationship is well received. Physicians do usually not frame the scrutiny of social relationships as part of their scientific expertise and, therefore, welcome complementary expertise provided by the social sciences and the humanities. Working arrangements grounded in a common ground are experienced positively:

280 | H OW GENES MATTER “That [...], that’s easier, because it’s not so much their practices that are being objectified, and ..., er, so in a way, we, (1) erm, (1) It was not the, it was not them, (1) we presented, (1) er, in this ...”

Even though the attempt to identify research questions that are relevant for all actors involved is reported as a constructive strategy to develop common ground, ELSA researchers nevertheless experience it as challenging to explain their disciplinary perspectives on the life sciences. Hence the area of intersection is described as rather small of what is perceived as equally rewarding research question for both sides. Focussing on utility aspects certainly involves the largest potential for the development of a common ground. Everything that is not identified as useful is difficult to perceive as worthwhile for co-operation partners who are not familiar with the social sciences and the humanities. In the following extract, the quoted interviewee explains his thoughts about this issue. Interviewer: “What could that be? What could be the common ground?” Interviewee: “[...] a very good question. I mean, things like, erm, stigma of mental health, erm, and doing research into stigma, is certainly an area that the group themselves (2) very much are interested in, (1) erm, I guess ...(3). I guess they see, the group, (1) I might be talking out to because it’s just my feeling on the centre, but perhaps they would see (1) and understand [...] so, more value (1) in things, or in kind of sociological research (1) that is of interest to them. So, they’re not really interested in your kind of (1) epistemological stuff, or kind of STS lab work. But things like stigma, or things like how the environment and genetics interact with each other, and doing a kind of urban study of a particular (1), erm, local, or public understanding of science, I think that does interest them actually, you know.”

It is an important aspect of the development of a common ground to identify and agree on a shared problem perspective. Achieving it is, however, a major challenge especially when ELSA researchers are confronted with instrumental expectations. Another issue that is potentially interesting for both professionals of genetic medicine and for ELSA researchers is public acceptance of the life sciences. In order to develop a common ground it is, however, necessary to frame acceptance problems in a more open way that does not a-priori presume that bioscientific research is acceptable as such. The development of a common ground therefore includes the agreement on the problem framing, too. The pursuit of knowledge Despite the apparent significance of utility motives for the negotiations of co-operative relationships, there is another possibility for developing common ground. The following interviewee notes that in her experience most academics are open minded

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people, and it is therefore possible to raise their interest. Therefore, it is a rewarding strategy trying to make one’s own work interesting for bioscientists. “Erm, (2) I think (3), I think [... like] most (2) academics, they like having interesting conversations, (1) you know. So [...] I think, erm, (3) you know, if you’re interested in their work, then maybe you can show it like a genuine interest and not just a (1) erm, (3) in a kind of superficial interest. (1) [And then], you know, since some of them are interested in our work as well. I mean, someone asked me to send him (2) er, [... what is it ...], really interesting though, (1) you know, [...] you know, erm. That’s the ideal. I suppose, where [it’s exchanging] literature.”

Over the course of the conversation, I asked this interviewee whether she could identify a possibility to develop common ground. The interviewee answered as follows: “Mmh, erm, (1) mmh, [... I suppose] it’s a kind of pursuit of knowledge. (1) I think we’re all interested in that, in different types of (2) mmh.”

In an abstract way, there is a possibility to emphasise what academics have in common. For the quoted interviewee, this could be phrased as “the pursuit of knowledge”. All researchers share the motive to find out something new which was previously not yet discovered or was not yet satisfyingly answered. Having a job that is characterised by the search for the unknown connects academics. When ELSA research is perceived as the “pursuit of knowledge”, the researchers are regarded as academics, who share similar ideals with all other academics. This allows bioscientists to perceive ELSA researchers as persons who carry out research just like them and on a general level have a similar type of occupation. The following interviewee notes: Interviewee: “Well, I believe, you are perceived as an equal, you are indeed seen as an equal.” Interviewer: “Well, you belong to something where they also belong?” Interviewee: “You belong to something, where they also belong. You are also a researcher. It is not quite clear. That is not quite clear what sociologists do. And I it isn’t clear to me at all what kind of ideas they have about what sociologists can do and discover. Well, I believe, they have a much more medical idea about sociological theories and what sociology can do. Well, in a sense of a science able to predict. Well, if you do that then it happens. Well, I would say, they see you as equal. Also they haven’t got a problem being asked about it. The problem with politicians is that they can mistake it with a journalist.”

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Finally, the interviewed ELSA researchers note that, in the final analysis, co-operations are always a matter of interpersonal aspects such as sympathy. The following interviewee gives his account of that: “When that happens, this sympathy, I mean, it happens somehow in a conversation, just as you do it now in the interview. You nod, yes and you encourage, that you say something. Like that, possibly a certain sympathy for one another develops.”

Discovering each other’s interest that may even intersect is experienced as a basis to develop a fruitful relationship. Such common ground can consist in shared values or goals to improve patient care or the cure of diseases. Once such shared interests are identified it is easier to interest experts of genetic medicine for issues that lie beyond their scientific or medical expertise, but deal with the broader societal aspects of their work.

13.6 C ONCLUSIONS The goal of this chapter was to provide a better understanding of how ELSA researchers negotiate their relationships with bioscientists and physicians of genetic medicine they encounter over the course of their research. If ELSA researchers fail to establish a working relationship with those whose work they set out to study, this may lead to a breakdown of the relationship, the termination of an agreed collaboration, or it might at least compromise the continuation of the research process. Programmes that initiate the integration of ELSA research into bioscientific research create great opportunities. However, these arrangements are not without difficulties as the experiences of the interviewed ELSA researchers demonstrate. One of the key difficulties results from the enrolment into networks with divergent action programmes. ELSA researchers working under such circumstances experience severe conflicts and are challenged to find a constructive way of dealing with the expectations they are confronted with. They need to negotiate their loyalties with their co-operation partners, as well as their peer community’s demands. Bioscientists and physicians of genetic medicine expect a benefit when collaborating with ELSA researchers. Such expectations may be experienced as instrumentalisation. However, ELSA researchers also seek to negotiate a trade-off when agreeing to serve the requests of bioscientists and physicians of genetic medicine. In any case, the engagement with professionals of genetic medicine was experienced as a rather resource intensive undertaking. Especially collaborative arrangements require considerable efforts, which result in difficulties in finding time to write academic publications for high rank journals.

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The way in which ELSA researchers experience their relationships with bioscientists and physicians of genetic medicine certainly depends on how they conceptualise their own role and how compatible this form of self-constituting is with what is expected of them in a given situation. It is, however, striking that the ways in which ELSA researchers conceptualise their own role stand in considerable contrast to how they experience the relationship to those they encounter. Although framing their experiences largely in positive terms, ELSA researchers explain that they often perceive their relationship as asymmetric. On occasion they even feel disrespected and rejected. It is interesting to note that the interviewed ELSA researchers highlighted the importance of institutional arrangements, which pre-structure their relationships to those they encounter. ELSA researchers perceive their relationships as power relations often performed as epistemological boundary work and the demonstration of scientific expertise. Based on the analysed interview data it can be argued that individual ELSA researchers can certainly influence the way in which he or she is perceived by his or her vis-à-vis in the field. Indeed, I have outlined the different ways in which ELSA researchers negotiate how they are perceived by those whose work they study. There are two narratives by which ELSA researchers describe their strategies to negotiate who they are and what they do. The core themes of these narratives are autonomy and utility. Autonomy can be described as the claims not to be governed so much in what one can do as an ELSA researcher. This includes the definition of the research question, the goals pursued and the impact it should develop. Utility is a strategy that orientates ELSA research towards societal utility; typically defined as a contribution to sustainable development, user adequacy, social justice, democratic participation and last but not least as economic benefit. Whether ELSA researchers claim autonomy for their research or whether they offer the utility of their contribution, they are challenged to develop a common ground as a basis for a working relationship with the professionals of genetic medicine whose work they strive to study. The attempts to establish such common ground can be described as negotiations in a “trading zone” (cf. Galison 1999[1997]). Again two strategies were identified. When pursuing the first one, ELSA researchers seek to develop common ground as a joint interest in the pursuit of knowledge. Another strategy is the identification of a common problem perspective shared by both ELSA researchers and professionals of genetic medicine. Whereas the former coincides with autonomy claims the latter also welcomes utility offers. The ways in which ELSA researchers negotiate their self-constituting with those they encounter over the course of their research draws attention to what lies beyond the scope of mere individual action. These negotiations are part of a larger social context in which they are performed. What ELSA researchers can do in their projects and hence how they can constitute themselves as actors does not simply depend on what happens between two social actors. Who ELSA researchers are and what they

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can do is also a result of the larger context in which they operate. In other words, the way in which ELSA research is institutionally framed, is crucial for how the researcher is constituted as an actor. It can be argued that the enrolment in governmental research programme constitutes ELSA researchers as ethical assessors. The word “ethical” in the name of a research programme is enough to evoke the concern that social scientists and their colleagues from the humanities are sent to reveal wrongdoing in the lab or the clinic. If a call for projects requires ELSA research to produce policy relevant outcomes, it is only consequential that those who hold such grants are perceived as policy advisors or at least reporters to the government. Regardless of the actual research interest, ELSA researchers working in such frameworks are already associated with a particular agenda when they enter the field as a consequence of the institutional integration of their research. Hence, they are necessarily prompted to clarify where they stand and what they intend to achieve with their work. These circumstances show that the process of self-constituting as a researcher goes beyond what is controlled and enacted by the individual. Framework conditions, policy agendas, research programmes constitute social scientists and their colleagues from the humanities as actors of a bioscientific network in a particular way. Who they are in this context, and accordingly, what is perceived as meaningful action under these circumstances, is significantly influenced by these contextual factors. Therefore, it is not only a practical necessity to negotiate one’s own role in a given research context, but also it is a pressing science policy issue to discuss what the task of ELSA research should be and how the framework of such inquiry should be organised. After all, it is a relevant question for ELSA researchers themselves how they wish their field to develop in the future. It is therefore a collective task for the field to negotiate with science policy makers the conditions of the social inquiry of genomics between autonomy and usefulness; a task that not only is a challenge for the ELSA research, but for science and technology studies in general.

Conclusions

14 Methodological challenges

I conclude this study with a discussion of two important topics. First of all, I address methodological implications of ELSA research. This is the task of the present chapter. In the last chapter, I finally address the significance of how organisational frameworks shape the conditions under which the scrutiny of ethical, legal, and social aspects of emerging technologies (such as genetic medicine) can be carried out. While discussing methodological implications it is necessary to recall the specific research arrangements through which ELSA research is organised. They bring professionals of genetic medicine together with social scientists and their colleagues from the humanities in very specific ways. Networks are constituted that stimulate a particular type of study while, at the same time, divergent research efforts become confined. I argued that the specific network enrolments of ELSA research do not only shape action programmes, but the negotiation of these action programmes also constitute who ELSA researchers are in a given research context. Drawing on Michel Foucault (1997[1983]), I argued that the constituting of oneself as the subject of research is always a product of both, self-definitions of who ELSA researchers want to be and how the other members of the network act upon ELSA researchers and their practices. It is important to acknowledge that ELSA researchers are active elements of the research process. In other words, they are perceived as subjects carrying out actions with specific purposes and effects. When interacting with professionals of genetic medicine ELSA researchers are not faceless tools of knowledge production; on the contrary they are perceived as persons with intentions and interests, clients and addressees, expertise and incompetency, etc. All these perceptions of their person have significant effects on how professionals of genetic medicine interact with ELSA researchers who strive to scrutinise ethical, legal, and social aspects of genetic medicine. The Finnish social scientist Peerti Alasuutari (1995) addresses these implications in his lucid methodology book “Researching Culture”. He brings to mind that first of all, interviewees want to know what brings social scientists to their doorstep. Alasuutari writes:

288 | H OW GENES MATTER “In studies based on qualitative interviews, for instance, it can be safely argued that no interviewee will answer any of the questions presented without giving at least some thought to the purpose of those questions; […]. This is most clearly seen in unstructured interviews where the respondents always have to make the choice between what they want to tell and leave untold.” (Alasuutari 1995:90)

Along these lines, it is safe to assume that experts of genetic medicine will answer differently to the interviewer depending on whether they see his or her work as potentially advantageous or detrimental to their own interests. It is therefore crucial to reflect on how ELSA researchers are received by the actors in the field they encounter during the research process. What Alasuutari claims for the research interview, can also be said about participant observation. Ethnographers cannot simply enter a social field, but they need to explain and justify their presence. They need to win the trust of the approached persons and their willingness to co-operate over the entire duration of the research in order to obtain meaningful results (cf. Giddens 1997 [1989]). The fact that communicative statements are made in relation to conceptions of the other is highly important for the interpretation of social inquiry. Elliot Mishler (1986) reminds us that research interviews are after all speech events. They are jointly constructed discourses by which meaning is co-produced and negotiated. He notes: “Questioning and answering are ways of speaking that are grounded in and depend on culturally shared and often tacit assumptions how to express and understand beliefs, experiences, feelings, and intentions” (Mishler 1986:7). This statement argues against the view that social inquiry is entirely independent of who the researcher is as a person. Already Aaron Cicourel and Harold Garfinkel have questioned the interview as a neutral data-gathering instrument (Garfinkel 1967; Cicourel 1964; 1970). Of course, the question becomes only meaningful if we abandon the positivist view that the interviewer is merely a data producing tool. Feminist scholars have articulated similar criticism. Adranna Kezar notes for instance: “In traditional interviewing, detachment form the interviewees is seen as essential for reliability of data. Most feminists reject the model of the passive vessel of answers, realizing neutrality is not only impossible but serves no real purpose …” (Kezar 2003:400).

Interviews are social processes and they need to be analysed as such. Like in all other communicative processes, also the participants of interviews present and justify themselves. In other words, they manage how they are perceived by those they encounter. For that reason, it is a prime methodological problem to understand who the interviewer is during the research process. Practices of self-presentation are first and foremost discursively constructed in activities like interviews (cf. Lee & Roth 2004:3; see also Goffman 1959). Research interviews are not just an opportunity to gather data, but they are also an “interpersonal drama” (cf. Hermanns 2000:360-361).

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It is a decisive capacity of the interviewer to understand the roles attributed to one’s own person as well as to understand the roles enacted by the interviewee. Furthermore, Hermanns states that it requires the skills of the interviewer to allow the interviewees to take on their roles (cf. Hermanns 2000:364). With that, Hermanns claims that the interviewees need to be given the opportunity to be sincere in their selfpresentations. In order to understand what ELSA researchers are told during an interview and what they witness during field observation, it is necessary to understand who they are to those they interview and observe. What kind of expectations regarding the social studies of genetic medicine do ELSA researchers embody when interacting with professionals of genetic medicine? In order to shed more light on these issues, I discuss classical sociological theory as an instructive theoretical framework for a methodological reflection of ELSA research. At first, I recall Erwing Goffman’s analysis of social interaction in order to provide a conceptual framework my methodological reflection. I continue with a review of contemporary methodological literature dealing with the interviewer as subject of the research process. Taking the discussion back to the present study, I once more present some empirical data to show how the discussed methodological considerations play out in the context of ELSA research. On this basis, I conclude with the contextualisation of ELSA research into larger science-policy frameworks.

14.1 C ONCEPTUAL

BACKGROUND

To begin with, I recall Erwing Goffman classical sociological works on human interaction in order to provide a conceptual framework for a methodological reflection of ELSA research as a social process. In his famous book “The Presentation of Self in Everyday Life” Erwing Goffman writes: “When an individual enters the presence of others, they commonly seek to acquire information about him or to bring into play information about him already possessed. They will be interested in his general socio-economic status, his conception of self, his attitude toward them, his competence, his trustworthiness, etc. Although some of this information seems to be sought almost as an end in itself, there are usually quite practical reasons for acquiring it. Information about the individual helps to define the situation, enabling others to know in advance what he will expect of them and what they may expect of him. Informed in these ways, the others will know how best to act in order to call forth a desired response from him.” (Goffman 1959:1)

What Goffman writes about social interaction in general, I apply to processes of empirical social inquiry. Both ELSA researchers and professionals of genetic medicine try to understand who they encounter in a given research situation, and they adjust

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their behaviour to how they assess their respective vis-à-vis. It is a precondition of social inquiry to establish a working relationship with those whose social practices are supposed to be studied. This is the first task of ELSA researchers using empirical methods. During the establishment of such relationships, the priority is to initiate and maintain communication. In Goffman’s terms, the goal is to “control” the behaviour of the person one is communicating with. He notes: “This control is achieved largely by influencing the definition of the situation which the others come to formulate, and he can influence this definition by expressing himself in such a way as to give them the kind of impression that will lead them to act voluntarily in accordance with his own plan” (Goffman 1959:3-4). Accordingly, it can be argued that ELSA researchers act in such a way that they encourage their vis-à-vis to answer their questions or to grant access for participant observation. This basic agreement needs to be established at the beginning of empirical research processes. Goffman notes on communication processes in general that such agreements define the situation in which social actors meet each other. In his words, this reads as follows: “Real agreement will also exist concerning the desirability of avoiding an open conflict of definitions of the situation. I will refer to this level of agreement as a ‘working consensus’.” (Goffman 1959:10; see also Goffman 1981:10)

In order to create the desired relationship, it is crucial to develop an understanding of who the encounter is with and consequently, it is equally important to decide how to present oneself. According to Goffman, both sides depend on their initial information at the beginning of the communication. On this basis they start to define the situation and develop their response actions. “The individual’s initial projection commits him to what he is proposing to be and requires him to drop all pretences of being other things” (Goffman 1959:10). Although modifications are generally possible, interactive processes are, for the most part, defined quite early. “The others find, then, that the individual has informed them as to what is and as to what they ought to see as the ‘is’” (Goffman 1959:13, emphasis original). Against this backdrop, it becomes apparent how important it is for empirical inquiry to understand who ELSA researchers are for those whose work they strive to study. For Goffman, it is clear that the possibilities of who one can be in a given situation is to a large degree pre-structured through “initial information”. It is therefore very difficult to change what was established at the beginning of a social process. Against this background, Goffman develops his understanding of social “roles”. He notes: “The pre-established pattern of action which is unfolded during a performance and which may be presented or played through on other occasions may be called a ‘part’ of ‘routine’” (Goffman 1959:16). In his analysis of social interaction, Goffman uses a theatrical terminology. Antony Giddens explains that according to Goffman

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roles can be understood as the compliance of a person with socially defined expectations (cf. Giddens 1997 [1989]:86). Consequently, human beings act in accordance with their role. In Goffman’s words, this reads as follows: “When an individual appears before others, he knowingly and unwittingly projects a definition of the situation, of which a conception of himself is an important part” (Goffman 1959:242). Furthermore, Goffman emphasises that roles are to a large extent already pre-defined (i.e. how human beings are perceived in a social situation). Social roles do not need to be invented from scratch. Goffman uses the term “front” to express this claim. He explains: “When an actor takes on an established social role, usually he finds that a particular front has already been established for it. Whether his acquisition of the role was primarily motivated by a desire to perform the given task or by a desire to maintain the corresponding front, the actor will find that he must do both. […] Since fronts tend to be selected, not created, we may expect trouble to select a suitable front for themselves from among several quite dissimilar ones.” (Goffman 1959:27-28)

This is precisely what becomes problematic in the context of ELSA research. Carrying out ELSA research inevitably implies the necessity to choose between existing ideas of what social scientists and their colleagues from the humanities do when they study ethical, legal, and social aspects of the life sciences. In chapter 12, I have demonstrated how ELSA researchers seek to define their own role and accordingly present themselves as scholars, collaborators, facilitators or advocates. The point is, however, that these attempts to constitute oneself as an actor need to be related to how one is perceived by the other actors in the field. In the previous chapter, I have argued that this positioning oneself in relation to others requires intensive negotiations. The point is that these negotiations are not always straight forward. On the contrary, they can involve severe conflicts. From Goffman’s point of view, these negotiation processes can be analysed as what he calls “interaction”. Here is how he sees it: “For the purpose of this report, interaction (that is, face-to-face interaction) may be roughly defined as the reciprocal influence of individuals upon one another’s action when in one other’s immediate physical presence.” (Goffman 1959:15). Goffman’s decision to use a theatrical vocabulary for his analysis of social interaction to a certain extent implies a negative connotation. The expressions “playing a role” or “employing a front” sounds a lot like cheating and false pretences. Goffman’s point, however, is that there is no other way. It is as impossible to perform no role as it is to adopt no front. He argues that, for social interaction to function well, it is necessary to accept a role and to comply with it. Interaction requires the participants to fulfil role expectations. For that reason, Goffman talks about “idealization”. With that, he refers to the need to comply with a role as one knows it and to the expectation that others do the same (cf. Goffman 1959:34). For Goffman, there is no alternative

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to that. Human beings are nothing but what they “enact”. Accordingly, Goffman states: “Performed with ease or clumsiness, awareness or not, guile of good faith, it is none the less something that must be enacted and portrayed, something that must be realised” (Goffman 1959:75). Against this backdrop, it can be concluded that, also for Goffman, the subject exists only “in actu”; it is something that needs to be performed. “A correctly staged and performed scene leads the audience to impute a self to a performed character, but this imputation—this self—is a product of a scene that comes off, and is not a cause of it. The self, then as a performed character, is not an organic thing that has a specific location, whose fundamental fate is to be born, to mature and to die; it is a dramatic effect arising diffusely from a scene that is presented, and the characteristic issue, the crucial concern, is whether it will be credited or discredited. In analysing the self then we are drawn from its possessor, from the person who will profit or lose most by it, for he and his body merely provide the peg on which something of collaborative manufacture will be hung for a time. And the means for producing and maintaining selves do not reside inside the peg; in fact these means are often bolted down in social establishments.” (Goffman 1959:253).

In his famous book “The Presentation of Self in Everyday Life” (1959) Goffman discusses the problem of authenticity. He raises the question whether the presented image of a person is credible or not. This is certainly an issue relevant to empirical ELSA research, since trust is an important element of the relationship to the professionals of genetic medicine whose work is supposed to be studied. But arguably it is even more relevant to analyse the processes through which the roles and faces of ELSA research are brought about and become established. For Goffman, roles and faces are hard to change. From a Foucauldian point of view, it is possible to analyse this persistence as effects of power relations (cf. Foucault 1982; 1997[1983]). Ensembles I have repeatedly argued that the practice of ELSA research is not merely a matter of individual choice. Goffman’s approach substantiates this claim. He understands human behaviour, not as isolated single events, but as “larger series” of action which involve a number of participants (cf. Goffman 1959:73). In short, Goffman addresses the ways in which a group of human beings act together and upon each other. Against this backdrop, he defines: “I will use the term ‘performance team’ or, in short ‘team’ to refer to any set of individuals who co-operate in staging a single routine” (Goffman 1959:79). In order to do so, a certain type of pact or as he calls it “understanding” is required. It is necessary to agree on how the members of an ensemble communicate and relate to each other in the presence of others. It is not, however, necessary to maintain the image they want to present to outsiders when being merely amongst

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ensemble members. Knowing when and how it is necessary to present oneself signifies the “insiders” of an ensemble. It is, however, only possible to convey a consistent image if it is possible to rely on the other members of the ensemble. In the context of ELSA research, both professionals of genetic medicine and ELSA researchers act as “ensembles”. They do this for instance when participating in public talks, deliberative processes or public engagement events. Furthermore, scientific conferences, evaluation meetings, and other academic events are also occasions on which ensembles are being formed. The members of an ensemble are restricted through the loyalty to their group in how they can act. They cannot divert just like that from how they have agreed to present themselves (Goffman 1959:80). Divergent behaviour is perceived as disagreement which can easily undermine the authority of the actors of the respective group. The members of an ensemble depend on a certain type of group solidarity in order to maintain the specific definition of a situation (cf. Goffman 1959:85). According to Goffman ensembles produce their own order which allocates the authority to define how a given ensemble should act to certain members. He writes: “In general, those who participate in the activity that occurs in a social establishment become members of a team when they co-operate together to present their activity in a particular light” (Goffman 1959:102). Interestingly, Goffman suggests that ensembles are secretive about the type and extend of their co-operation that allows them to be successful. Goffman’s perspective coincides with empirical observations that professionals of genetic medicine do not present their work as openly to ELSA researchers as they do when discussing it with colleagues. Furthermore, it becomes possible to frame loyalty bonds as observed in the previous chapter as group solidarity of ensembles. The significance of the context Goffman is famous for distinguishing communication in front of an audience and in the absence thereof. For this distinction, he coined the terms “frontstage” and “backstage”. He defines: “We will have to see that some aspects of a performance seem to be played, not to the audience, but to the front region” (Goffman 1959:107). And furthermore, he notes: “A back region of backstage may be defined as a place relative to a given performance, where the impression fostered by the performance is knowingly contradicted as a matter of course” (Goffman 1959:112). Backstage, it is possible for actors to drop their mask and to deviate from their roles. The audience has no backstage access because it is there where all the secrets are kept. For that reason, it is essential to control access to the backstage. Goffman calls this process “work control” (Goffman 1959:114). Once the audience has accidently gained access to the backstage it is nearly impossible to re-build the dropped face. Goffman distinguishes a third location, which he calls the “outside”. He explains: “The notion of an outside region that is neither front nor back with respect to a particular performance conforms to our common-sense notion of social establishments

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…” (Goffman 1959:135). People residing outside an institution are consequently called “outsiders”. With this term, Goffman refers to those whose presence is undesired. Furthermore the term allows Goffman to explain that roles are dependent on the context in which they are performed. The crux of the matter is that one context may allow actors to perform a particular role; other context may not allow to do so. Consequently, ensembles aim to prevent different groups of actors from mixing in order to avoid role conflicts. Taken together, Goffman distinguishes three main roles: “those who perform; those performed to; and outsiders who neither perform in the show nor observe it” (Goffman 1959:144). The relevant point of Goffman’s perspective for the analysis of ELSA research is the following. He explains, just like George Herbert Mead before him, that it is a fundamental principle of human interaction to anticipate how one is seen by others (cf. Goffman 1959, Mead 1967[1934]). Goffman notes: “I have said that when the individual appears before others his actions will influence the definition of the situation which they come to have” (Goffman 1959:6). These forms of intervention are partially consciously carried out. However, to a certain extent they are not conscious to the actors involved. Goffman explains his perspective: „An act is taken to carry implications regarding the character of the actor and his evaluation of his listener, as well as reflecting on the relationship between him and them“ (Goffman 1981:21). Thus, Goffman states that, in any conversation, such assessment of the other person takes place and what we say, how we say it and how we communicate nonverbally all depends on such assessments. He goes on: „Persons who provide responses, no less than those who provide statements, attend to back channel effects for a continuous guide to the reception of their contribution“ (Goffman 1981:49). Here, Goffman states that what we say we do in anticipation of how it is perceived. For two reasons we act in such a way; first for the sake of intelligibility, second for topicality. Against this backdrop, it is possible to conceptualise research interviews as “centred interaction”. This means that when such interaction takes place the individuals involved concentrate directly on what the other person says or does (cf. Giddens 1997 [1989]:84). Giddens continues to elaborate on Goffman’s approach to explain that social actors are very perceptive of the image that other people draw about them and they apply various forms of “impression-manipulation” in order make sure that those they encounter react to them in the desired way (cf. Giddens 1997 [1989]:87). Along these lines, it is possible to argue that ELSA researchers seek to get an idea about the ways in which their vis-à-vis perceive them during the research process; and viceversa. This insight into social interaction is most relevant to empirical social inquiry. Having discussed the matters during research interviews with my fellow social scientists, I found that these anticipated perceptions often follow a “friend or foe” scheme. Yet, these imaginary perceptions differ significantly from how social scien-

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tists see themselves (cf. Wieser 2011e). The discrepancies between how social scientists constitute themselves as researchers and how they think they are perceived by those with whom they interact during the research process, result in a need to negotiate one’s own social identity within the research process. Such negotiations are indispensable when a working relationship between social scientist and bioscientist should be achieved. Contemporary methodological Literature In the next step, I take Goffman’s analysis of social interaction further and relate it to contemporary methodological literature. In particular, I focus on the researcher as a person and how that is relevant to the research process. It is somewhat surprising that what is available on the issue is rather brief. Adrianna Kezar notes for instance: “In my examination of the methodological literature, few source articles on elite interviews examined epistemological issues; instead, it focussed almost exclusively on issues of access or interview format ...” (Kezar 2003:396; Pezalla, Pettigrew et al. 2012). This is rather surprising in light of the central importance of the research interview. It is estimated that about 90% of all social, scientific studies use interviews in one form or another as a preferred data collection strategy (cf. Lee & Roth 2004:3). Due to the fact that interviews are a central part of meaning making in social life, Paul Atkinson and David Silverman talk about an “interview society” (cf. Atkinson & Silverman 1997; Lee & Roth 2004:3). Even if it is acknowledged that it matters who the interviewer is as a person only little is said beyond this basic claim. Also, Rubin and Rubin leave it at that: “The responsive interviewing model recognizes the fact that both the interviewer and the interviewee are people, with feelings, personality, interests, and experiences. Interviewers are not expected to be neutral or automatons, and who they are and how they present themselves affect the interview. Each interviewer develops his or her own style that he or she is comfortable with and that matches his or her own personality. On the other hand, because the interviewer and interviewee interact and influence each other, the interviewer has to be self-aware, examining this or her own biases and expectations that might influence the interviewee.” (Rubin & Rubin 2005:30)

Of course, individual characteristics are relevant, but there is a lot more that constitutes researchers as an actor than personal preferences and feelings. Who researchers are for those they encounter during the interview is a result of complex social and political actions. If the issue is addressed, it is mostly done in terms of the identity of those under investigation. Much of the methodological literature on how researcher and researched perceive each other and aim to influence these impressions during the research interview focuses on the interviewee – despite their claim to address both (e.g. Lee & Roth 2004; Pezalla, Pettigrew et al. 2012).

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Amy L. Best notes to this issue: „Whereas qualitative researchers traditionally have worked to understand the social relations and symbolic worlds of others, contemporary practitioners recognize as a matter of course the importance of close analysis of the social relations of research itself“ (Best 2003:895). However, only a few authors discuss the interviewer. Remarkable exceptions can be found in the literature on gender and ethnicity. In this field, methodological aspects of who the interviewer is as a person are most often and most thoroughly discussed in terms of identity (cf. Stanley & Slattery 2003). Briggs (2002) argues that feminist inquiry provide the most forceful methodological approaches to examine the research interview in relation to the respondent and to exploring “the complex processes that shape the construction of identities in interviews” (ibid.:915). Along these lines, Kezar also suggests looking to this tradition to inform the future of interviewing (cf. Kezar 2003:399). However, even in literature addressing these issues for the most part focus of the analysis of the identity of the interviewees. Also, Yew-Jin Lee and Wolff-Michael Roth (2004) programmatically highlight the significance of the identity of the researcher and the researched and point to the fact that these are constituted over the course of the research process, but do not elaborate on this claim beyond the mere statement (cf. Lee & Roth 2004:2). It seems that identity is merely an issue that concerns the other in the research process. Certainly, the literature on qualitative social inquiry deals with the relationship between researcher and research in categories of “insider” and “outsider” (cf. Best 2003:896; Rubin & Rubin 2005:33-35 and pp. 79-107). Rubin and Rubin note to this issue: „Insider and outsider statuses are frequently defined in terms of class, sex, race or ethnic lines that some think are hard to cross“ (Rubin & Rubin 2005:87). Also, Amy Best adds to this observation: „Whereas classic fieldwork idiom often pursued these concerns with only scant mention of the broader social and political context within which research relations develop, qualitative researchers are increasingly sensitive to the political underpinnings of these relations and the resultant dilemmas that arise in the field” (Best 2003:896; see also Arendell 1997). For that reason, Amy Best pleads for the scrutiny of power relations in the research process. Also, McCorkel and Myers bring to mind that feminist standpoint theorists scrutinise how the researcher’s positionality affects all aspects of the research process, from the articulation of a research question to the data analysis as well as presentation of the findings. This influence becomes problematic when studying those who are marginalized on the basis of race, class, and gender“ (McCorkel & Myers 2003:199). McCorkel and Myers continue to argue: “The politics of identity and difference pose considerable challenges for the practice of sociological research. While feminist standpoint theorists have generated tremendous insights regarding the dynamics of identity and knowledge production, mainstream sociology has been slow to grapple with the theoretical and methodological implications of this work. Social theorists, for example, write about identity as if it were an obstacle to be struggled against rather

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than the object of political struggle (Calhoun 1994; Fraser 1997). Researchers have generally dealt with identity politics in one of two ways. In most cases, researchers omit considerations of identity from their discussions of study design and research methodology (e.g., Anderson 1999) . In other instances, researchers briefly acknowledge crude aspects of their identities (such as race, class, and gender) without explicating how their data, analyses, and conclusions were shaped by their positionality (e.g., Sanchez Jankowski 1991; Venkatesh 2000). It may be that sociologists are hesitant to consider the effect of identity on their work because the groundedness of identity claims threatens to unearth those ghosts we are trained to ritualistically bury at the start of our research projects: bias and subjectivity. Concerns about the situatedness of the knower, the context of discovery, and the relation of the knower to the subjects of her inquiry are demons at the door of positivist science. The production of “legitimate” knowledge begins with slamming the door shut.” (McCorkel & Myers 2003:199-200)

It is long established in feminist methodology that researchers carry considerable social, historical, and cultural baggage which “inevitably influence the interactional processes and the ultimate research outcome” (Arendell 1997:343). In her study on women interviewing men, Terry Arendell concludes that as a woman she was significant for what was told to her as an interviewer. She explains: “Yet, I came to understand that it was not so much me as a person having a particular interactional and interview style to whom they [divorced men] were sharing their stories. Rather, they were relating to me on the basis of their expectations of me as a woman … ” (Arendell 1997:348)

Along these lines, Arendell concludes that in her study men assigned different and shifting identities to her (Arendell 1997:356). These were merged with the social identity of the former wife, an honorary male, or a potential date. Another exceptionally instructive paper discusses the ways in which the interviewers are constituted as actors in the research process is by Christine A. Stanley und Patrick Slattery (Stanley & Slattery 2003). They demonstrate how their positionality influences their actions as researchers. With their meta-reflection, they aim to problematize their research practices in order to act upon it and to consider it during data analysis. Christine A. Stanley writes about the ways in which she feels perceived as a researcher: “I know that people first and foremost see me as a Black woman (whether they acknowledge it or not), and I know that I am often judged because of my race and ethnicity. When Colleagues express surprise at my oral, written, and verbal scholarship, I detect sedimented assumptions and ingrained prejudice. Some ask questions about the Jamaican culture that reflect biases perpetuate by the popular media. Some treat me differently when they discover that I am not African American. ‘Oh, that explains it. You are so different. You are not from here,’ is what they

298 | H OW GENES MATTER often say. What they mean is, ‘We expected a Black woman to exhibit certain characteristics, but you are not this way.’” (Stanley & Slattery 2003:707)

The quoted authors discuss how their existence influences their action during the research process. The fact that culture, values, and perceptions have an influence on the interpretation of field materials was also acknowledged before. Against this backdrop, Stanley und Slattery suggest investing time to carry out “meta-analysis” when researching in mixed race and gender teams (Stanley & Slattery 2003:724). However, what Stanley and Slattery explain about gender and ethnicity are certainly not the only relevant aspects about the way in which researchers become who they are during the research process. In the context of ELSA research, it is important to go beyond the addressed methodological problems and to study what constitutes the researcher as an actor in the field (e.g. social status, seniority, disciplinary background, institutional affiliation etc.). Just as Amy Best notes with regard to her work on race and ethnicity, it is equally relevant to social inquiry in general: „To ignore these dimensions [gender, class, race, and sexual meanings], we distort how research relations re-secure relations of domination even in the case when research makes visible these relations but also constructs them anew“ (Best 2003:910). Also, Rubin and Rubin point out that researchers need to decide how they present themselves to those they encounter. They state: “How should you present yourself when conducting the research; what role do you take? How do you interview across social boundaries of class, ethnicity, or education“ (Rubin & Rubin 2005:84)? With this statement Rubin and Rubin emphasise that human beings understand each other via their cultural roles. They continue to explain that if researchers fail to spell out what their role is in ways interviewees can understand, they may assign a role to the researcher that makes interviewing difficult (cf. Rubin & Rubin 2005:84). Rubin and Rubin advise the interviewer to clarify, who he or she is, give personal details and details of personal experience, declare where the money for the research at hand comes from, and also advise to distinguish themself from other social actors who are different and may be seen with more hostility and less openness. However, the positionality of the researcher is not only important in the context of data interpretation; it is already significant during data acquisition. Even though Stanley and Slattery are certainly right to encourage researchers to reflect on the influence of their own person on the research process, it is nevertheless important to acknowledge that not everything lies in the hands of the reflexive researcher. A significant part of how researchers are perceived lies beyond what Goffman called “impression control”, but nevertheless exercises a strong influence on how those under investigation present themselves during the research process. It is therefore necessary to accept that the researched have their own ideas about the researcher and to take these perceptions into account when analysing the obtained

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data. In the context of ELSA research, questions arise, such as: What do bioscientists tell social scientists they do not perceive as equals due to their assumed lack of factual knowledge? How do professors talk to PhD students? How do professionals of genetic medicine talk to somebody they conceive as controlling or criticising their work? All these questions are relevant to understand what is said and what is not said during the research interview. It is, however, especially important to understand how the framing of the research context – such as the organisation as ELSA programme – constitutes who social scientists and their colleagues from the humanities are in a given research context. How do governmental research programmes contribute to the fact that ELSA researchers are perceived on the grounds of particular assumptions (or even prejudices) regarding their person and their work? What is projected upon them when they enter collaborations with professionals of genetic medicine? The point is not whether these projections are true or false images of ELSA researchers. What matters is their effect regardless. The ways in which ELSA researchers and their research practices are being perceived does not solely depend on individual actions. To a significant extent this depends on how ELSA research is organised. The practice of ELSA research is carried out in quite specific settings, initiated and designed under distinct science policy frameworks. This is why I argue that ELSA researchers are constituted as actors through processes that lie to a significant extent beyond the scope of what they can shape as an individual human being. The ways in which ELSA researchers are perceived by professionals of genetic medicine depends to a large degree on organisational conditions as shaped by science policy actors. It is clear that such constituting as an actor influences what is accessible to empirical social inquiry. In other words, I argue that who ELSA researchers are to those they study is significantly shaped by the larger (science-policy) framework in which their research is situated. The interviewees of the presented research knew that they spoke to a social scientist who studied ethical, legal, and social aspects of their work and whose project was funded by the Federal Ministry for Science and Research. Not only was this client also a relevant funding provider for the interviewees, but the Ministry was also responsible (together with others) for designing and amending the law on genetic research and its applications. Against this backdrop, I argue that what was said during the research interviews was connected to how my role as a researcher was constituted. Explaining the purpose and client of my study, I performed my role as a researcher by drawing on discourses of ethical, legal, and social aspects of genomics with governmental funding. However, these discourses go beyond individual action. Brian Wynne has argued for the case of Cambrian sheep farmers that the scientists they encountered during the Chernobyl fall out over Britain represent governmental agendas to them (cf. Wynne

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1996b). I suggest that the same can be claimed when social scientists encounter researchers and clinicians of genetic medicine. Rather than merely describing how medical experts see their own work, professionals of genetic medicine anticipate how their statements might be interpreted and hence try to articulate themselves in such a way that the presumed conclusion of the interviewer corresponds with the desired image they wish to communicate. In this respect, a research interview is no different than any other social situation (cf. Alasuutari 1995).

14.2 P ERCEPTIONS

OF THE RELATIONSHIP

In light of the discussed theoretical perspective, I now explain how ELSA researchers understand the ways in which they are perceived by professionals of genetic medicine. Following Goffman, social interaction depends significantly on how the actors involved mutually perceive each other (Goffman 1959; Alasuutari 1995). In this regard, human beings do not only assess those they encounter, but rather, they seek to anticipate how they are perceived by those they interact with. It was already outlined in the previous chapter that ELSA researchers observe considerable asymmetries in the relationship to professionals of genetic medicine. Inequality in the relationship becomes performatively established along the lines of knowledge differences. ELSA researchers experience it to be especially difficult to avoid such negotiations of expertise. The performative function of the presentation of bioscientific knowledge constitutes ELSA researchers as actors of a particular type. They become constituted as somebody who does not know what professionals of genetic medicine know, and therefore, need to be instructed. In such a way, ELSA researchers are framed as ignorant outsiders (cf. Brian Wynne’s analysis of the deficit model). Role divergence Given the significance of how social actors perceive each other, it is important to note the fact that the analysis of the presented interview data reveals a considerable difference in how ELSA researchers constitute their own role and how they describe the ways in which they feel perceived by professionals of genetic medicine. In other words, ELSA researchers feel misconceived by those whose work they study. Although it is possible to chance one’s own role within certain limits, self-constituting as a subject of research was found to be relatively stable. In order to maintain a working relationship to the actors in the field of investigation, it is necessary to present oneself as consistent actor (cf. Goffman 1959:62). By comparison, role ascriptions were found to be more situational and subject to change. In the following, I present a spectrum of accounts of how ELSA researchers conceptualise the roles attributed to them. These ascriptions are: ethics police, promoters, messengers, social

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engineers, naggers, master and novices as well as friend or foe. ELSA researchers contrast these perceived ascriptions with a counter model that focusses on reflexivity.

14.3 P ERCEIVING

ROLES AND RELATIONSHIPS

It is important to note that the below outlined images are the expression of how ELSA researchers think that they are perceived by bioscientists and physicians of genetic medicine they interact with over the course of their research activities. The observed attributions considerably overlap with a typology developed by Alexander Bogner and Wolfgang Menz to conceptualise expert interviews (cf. Bogner & Menz 2005[2002]). Whereas Bogner and Menz tried to develop a variety of different research strategies, my own goal is to understand the ways in which ELSA researchers become who they are as a result of their interaction with bioscientists and physicians of genetic medicine over the course of their research. Ethics police The first form of how ELSA researchers understand the ways in which they are perceived can be described as “ethics police”. With this term, I refer to a particular framing that conceptualises ELSA research as an activity that seeks to unveil ethically problematic aspects of genetic medicine and to identify corresponding misconduct. It should be emphasised that this is an image of how ELSA researchers think that they are perceived. They, however, do not share this framing of their work and usually reject it as unfounded. The interviewed ELSA researchers articulated a problem which they interpret as a misunderstanding of their professional activity as researchers. In the following extract the interviewee explains how he feels to be perceived: “So, when I come in (1) I think, there is a fear that’s, you know, I’m, you know, that you’re there to (2) to pick up on (1) mistakes, and stuff like that, [and like ...]. Because once you get a sociologist into an arena, and you’re researching in an area, those groups of people (1) assume that you’re researching particularly on them, and they see you as an auditor, they see you as an evaluator, and this is why, because people don’t really know what a sociologist does.”

A similar labelling as ethics police is mentioned in another interview. The interviewee notes that publishing is a strategic point of contention. When I asked to elaborate on this point, the interviewee continued to explain that bioscientists want to control how ELSA research findings are eventually published. Interviewee: No, that ..., I think they, er, (1) no, not in a ..., I think they would never, (2) no, not ..., (1). I mean, we had a meeting of ... We had email correspondence and we had a meet ..., face to face meeting, of an hour or two. Erm, (2) but they would not (1) acc... erm. It was more

302 | H OW GENES MATTER like, erm, (1) they wanted to convince us (1) and change our manuscript than in a way exchanging views, (2) because I think they were afraid (1) of ... And they, er, really disrespected (1) the product, (1) and, erm ... So, this, I have ..., yeah, it has been a, that ... Interviewer: Afraid of what? Interviewee: I think they were ..., they felt that we, erm, we exposed (1) practices that were not to (1) [be ...] that should not become public.

The interviewee raises the issue of ethical policing. She states that ELSA researchers are confronted with such attributions even if they do not aim to act in such a way. In other words, ELSA researchers are being made to actors of a particular type, whether they like it or not. In the mentioned case, the critical issue was the recruitment practice of physicians. The interviewee explains that informed consent was not obtained as she has critically mentioned in her analysis. Against this backdrop, I argue that whether or not ELSA research is being perceived as ethics police does not depend on how ELSA researchers conceptualises themselves as a researcher, but it depends to a large degree on how ELSA researchers become conceptualised by those they encounter and the organisational and institutional framework in which their work is concretely performed. The perception of ELSA research as a type of ethical control reflects the fact that ELSA researchers have become enrolled as actors of a network that is constituted in order to govern genetic medicine in research and clinical application. Promoters Promoters are persons who communicate a positive image of the life sciences. They highlight the significance of bioscientific research, point out its potential and explain its expected utility. In such a way, promoters represent the interests of those who carry out bioscientific research or apply its results in medical practice. The function of promoters is often identified with what public relation officers do. With the exception of those who explicitly seek a career in public relations and science communication, the assignment as promoter is undesired by ELSA researchers. This is especially true for social scientists and their colleagues from the humanities who seek to pursue academic careers. The attempt to assign ELSA researchers to the task to promote the life sciences is then interpreted as instrumentalisation. In this context, instrumentalisation is understood as the enrolment into the agenda of other actors (e.g. bioscientists). A critical approach is not desired from promoters. Instead, they are expected to present the life sciences in a positive light. For that reason, the task to promote the life sciences is often interpreted as the engineering of acceptance. The following interviewee explains:

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“I certainly will, you know, (1) ... interested in both people’s (1) viewpoints, [without a doubt]. (1) And that’s why it can be difficult being in the school of medicine, because you can (1) feel as if (1) you’re captured, or that they fear as if, you know, you are someone (1) just (2) basically (2) promoting their work ...”

The expectations of what ELSA researchers are supposed to do for bioscientists and physicians of genetic medicine are not always clearly defined. Sometimes, a possible benefit is sufficient, without knowing precisely what this benefit is. The establishment and maintenance of a relationship is sometimes enough. Networking was presented as a motive to engage in a relationship with other actors (e.g. with social scientists and philosophers). I asked the previously quoted interviewee if her co-operation partners had confronted her with a concrete benefit expectation or if that was rather vague. The interviewee answered: Interviewee: “Yeah, we are doing something that is really interesting, not only to ourselves, but to someone else, (1) and for another discipline. And they, er, and they thought that (1) they were just [...], more, maybe more like expanding their network ...” Interviewer: “Right.” Interviewee: “... than (1) seeing this person as: ‘oh, she’s the one who will take us to the (1) newspaper, or take us to the radio.’ Not in that way, (1) but, er, as a way of extending their network.”

Establishing a network of people who are potentially beneficial for one’s own research area is presented as an incentive. The quoted interviewee identifies this as part of the motivation why her co-operation partners engage in discussions with social scientists and their colleagues from the humanities. It is a potential benefit that is expected from ELSA researchers, a benefit that one day may actually materialise. Messengers The task of a messenger is to convey information to other people. On occasion, professionals of genetic medicine enrol ELSA researchers as messengers to report their views to science policy actors; especially to funding agencies. Funding agencies are especially interesting addressees if they fund both ELSA research and bioscientific research. If this is so, ELSA researchers are understood to present their assessment of bioscientists and physicians of genetic medicine to key actors of the network. The described interdependence explains why the practice of ELSA researcher can become rather explosive. Here is an example of an interviewee who feels enrolled as a messenger:

304 | H OW GENES MATTER “Well, it is more difficult for instance, if you ... I did a study on stem cell research for (client) and this was in (place). It is difficult to begin with you get the frustration of these people, yeah. Well, this is really true for such applied research where you somehow work for a political or administrative client. It is less true for such ELSA-projects, which are more oriented towards basic research. But when your client is for instance (governmental office), then they give you such messages, in a sense of: ‘we receive very little money’, or: ‘we get very little attention’, and: ‘all of that is over-regulated and generally it is so difficult’ and all of that. And yes, also this entire difficulty when you are used as messenger, well when they try to instrumentalise you as messenger, as the Wailing Wall, yeah.”

Many ELSA researchers share the view that it makes a big difference if ELSA research and bioscientific research is funded by the same agency. The enrolment as a messenger is especially powerful when it is the expected task of one group of actors to scrutinise the work of another group of actors. Apart from funding providers and policy actors it is also possible that messages are addressed to the public. In the following extract the interviewee explains that some bioscientists and physicians of genetic medicine use interviews with ELSA researchers as an opportunity to convey a message to the public. He notes: “Multiplying effect, precisely, something like that. Well, that is clear. Because this always comes out quite strongly. If these people, as it were, sit down and first thing without waiting for a question hold a monolog for the first twenty minutes, in which they get the most important facts right. And these are not just scientific issues, but also what their research is useful for and why that is to the benefit of society and why all these attacks fail and so on.”

Under the described circumstances, ELSA researchers are expected to convey the message they are told to the public. In such a way, they are expected to present the life sciences in a positive light, similar to what is expected of science promoters. Social engineering ELSA researchers are sometimes confronted with the expectation to help create a certain societal situation. I call this idea of what ELSA research is supposed to do social engineering. Such capability of ELSA research is typically desired for the prevention of techno-scientific controversies as they have occurred in the past. Especially the GM controversy is presented as a negative example. Social scientists and their colleagues from the humanities are expected to provide expertise suitable to prevent controversies of such type. One interviewee explains that he was confronted with this expectation: “And they say, yeah: ‘so we’re having you because we don’t want another GM fiasco.’ Which [... mean to be] problematic, because [our aim is] to prevent there being another GM. How do

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you prevent that? And then prevent it, and [what follows the ...], and also the conception of (1) what social sciences do there, which is (1) [nearly] wrong (1) basically [...] so yeah.”

As the quoted interviewee explains, social scientists are conceived as people who have the power to engineer a desired societal situation or to prevent an undesired one. It is not necessary to emphasise that such expectation is not how social scientists understand themselves. It is, however, important to note that this extract demonstrates that ELSA research is confronted with work expectations, which are rather unrealistic due to the fact that social processes are highly contingent and can hardly be engineered. Naggers It is a popular cliché that social scientists are perceived as mischief-makers by their colleagues from the natural sciences. The interviewed ELSA researchers have also noticed such attribution by the bioscientists and physicians of genetic medicine they encounter over the course of their research. In the following extract, one interviewee explains that he sometimes felt perceived as troublemaker who just seeks to criticise everything. It is interesting to note that the interviewee distinguishes between individual and institutional dimensions of such attributions: “That of course changes a little bit. Well, it is indeed, well, there are individual dimensions. Then, I think, there are institutional dimensions. And the individual dimension can be described quite simply. Because if you are new, of course, it is indeed difficult and tied up with hurdles just to get into the field. Well, I have especially experienced this of course during the first project, which was a little bit a kind of a minefield, where you are easily misunderstood, where you are obviously somehow judged as an ethicist or as a critic or as a grumbler. Because that is clear, if social scientists are interested in such issues, then this can only serve the desire to attack medical practice or human genetic practice in some way or to discredit its actors. And against this, I can remember very well how difficult this was. Well, there were indeed barriers, maybe also imagined, especially regarding high-rank actors. Well, I mean, you always have good and bad experiences, that is clear. But in the context of this first project, I can remember that this was developed relatively prominent.”

The interviewee relates his experiences with prenatal testing, a topic which he regards to be especially ethically sensitive. The interviewee continues to explain when he felt perceived as trouble maker. Interviewee: “(2) Yes, this is probably related to a kind of interaction dimension, isn’t it? Well, that you say, how am I perceived in the interview, most of all probably?” Interviewer: “Exactly, yes.”

306 | H OW GENES MATTER Interviewee: “Because I could not give further indications, because I did not investigate that systematically. But I got the impression, as it were, about this distribution of roles in the conversations – and there indeed it was actually predominantly like that – that I got the feeling I was perceived as a critic, well, as actually a troublemaker or as an exponent of a questionable societal movement, which is rather averse to science and progress and ignorant. And you could tell in these interviews that there was a kind of information campaign in the form of an instruction of human genetic basic knowledge.”

According to this interviewee the perception of social scientists is similar to that of journalists. They are seen as a link between science and a essentially ignorant public. The relationship between scientists and journalists is ambiguous. On the one hand, bioscientists and physicians of genetic medicine need journalists as promoters of their own field. Therefore, they depend on their positive attitude. On the other hand, journalists are criticised for misrepresenting science with distorted images in the media. ELSA researchers are faced with similar criticism. Like journalists, they are perceived as mediators or representatives of a critical, yet ignorant public. Master and novice Understanding the ways in which one is perceived as an ELSA researcher has another dimension I have not yet mentioned. The relationship between professionals of genetic medicine and ELSA researchers depends on how the persons involved rate each other’s expertise and reputation. The institutional embedding, the status of one’s own employer and that of the client of the respective research project are certainly significant. The reputation of this institutional embedding influences how one is perceived as a person. Formal academic qualifications have a similar effect on how personal reputation is perceived. The following interviewee explains how he understands these factors: “Obviously, to a certain degree you haven’t got, well not just the experience, but also of course you haven’t got all the adequate titles which open doors. If you haven’t gotten your PhD, the case is apparently more difficult. Then the chances are worse in comparison to say the uni has sent at least the professor of the section. That is of course also clear. And it is – if you have to learn in the field – I have experiences this very strongly – that somehow you have to develop a kind of access politics. You somehow need to develop an instinct for what is the better strategy now. Do you present yourself as most important representative of a high-rank institute in order to make that appropriately prominent – your own research? Or do you put it low and emphasise that you are inexperienced as a social scientist who tries to move up the next step in the career leader? And that is always a little bit difficult to estimate, which strategy is more rewarding. But in the beginning, I felt that to be a little bit burdening.”

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The extract shows that the quoted interviewee does not only understand the mechanisms of how his expertise and reputation is being perceived as the effect of a hierarchical relationship between the natural and the social sciences, but he also develops a perspective that allows him to discover spaces to manoeuvre. Being young and making an inexperienced impression is not necessarily a disadvantage when approaching bioscientists and physicians of genetic medicine with the request to explain their work. Friend or foe Especially when contentious topics are at stake, both ELSA researchers as a person and the purpose of their research are perceived in polarised categories. ELSA researchers explain their impression that they are judged in a friend-foe-scheme. A dichotomised perception does not appreciate nuances. A neutral position is difficult to maintain under these circumstances. The following extract demonstrates how ELSA researchers are inevitably perceived as holding a particular view. The quoted interviewee explains how difficult it is to talk about a controversial topic such as abortion without being immediately classified as a supporter or an opponent. He notes: “It is of course clear. You always have to reflect, what is the position of the one who tells me that. Yeah, that is funny, because in an everyday situation you haven’t got the time, but if you actually ... What is the position? What does he want from me? For instance, if you interview somebody who is very exposed regarding pro-choice, or let’s say ... You would always have to call it pro-choice/abortion, because one sounds clinical and the other sounds neutral and abortion belongs to the opponents, because it somehow sounds like abortion of the fruit of the womb. That sounds somehow evil. Well, actually we would need a more neutral term, we would need a meta-notion above both of the terms, okay.”

With his statement this interviewee addresses a serious methodological problem. The choice of words significantly influences how one is perceived. Evidently it makes a big difference if bioscientists and physicians of genetic medicine think they speak to a friend or to a foe. The example also shows how relationships are negotiated. The quoted ELSA researcher makes clear that he reflects on the ways in which he is perceived by his encounters and, for him a deliberate decision on how he wants to be seen is necessary. He also reflects on the implications on the research process, as he continues to explain: “Also during the interview, or somebody who carries out IVF, who justifies his or her position why he or she does it and somebody who carries out prenatal testing justifies his or her position why he or she does it. Well that means, you are always confronted with whatever position. You are always confronted with – on a gut level, I just call it a positioning discourse, with justifications and reasoning. And this you have to see. It is somehow always from a perspective. And

308 | H OW GENES MATTER it is not only like that when you deal with physicians. It is also like that with politicians. Yeah, that is actually the difficulty. The point is, that doesn’t come from a ... These are strange images, and I don’t know, if you can make sense of that at all, but it is somehow shifted. It is shifted in order to argue for a particular position and to justify it. That is actually the core difficulty you need to deal with.”

Counter model reflexivity The various forms in which ELSA researchers explain how they think that they are perceived have one feature in common. ELSA researchers generally feel they are misconceived by their encounters. Either instrumentalised to serve the goals of others or treated as someone who is potentially harmful leaves little space for appreciation and understanding of what ELSA researchers seek to achieve with their work. ELSA researchers conceptualise their own role in quit different ways, as I have already outlined in chapter 12. Ethical policing, the promotion of the life-sciences, and serving as a messenger or social engineer are not part of the narratives by which social scientists and their colleagues from the humanities constitute their own role as ELSA researchers. On the contrary, if there is a motive ELSA researchers have in common, it can be described as the attempt to enhance reflexivity. It is striking that there is hardly any trace of this motive in the narratives regarding the ways in which ELSA researchers understand the impression they make on their encounters during the research process. Quite obviously such a divergence between self-constituting and perceived image results in a situation in which it is necessary to negotiate who one is as an ELSA researcher. There are two main strategies to carry out these negotiations with the other actors of the bioscientific network. Either ELSA researchers seek autonomy or they strive to demonstrate the utility of their research. Last but not least the observed attempts to correct the ways in which oneself is perceived as an ELSA researcher also highlight the necessity to provide suitable institutional and organisational conditions.

14.4 R ELEVANCE

FOR RESEARCH PRACTICE

A striking discrepancy was observed between the ways in which ELSA researchers constitute their own role and their accounts of how they feel perceived by professionals of genetic medicine. Evidently, ELSA researchers are challenged to find individual solutions to cope with this role divergence. Only when they develop constructive ways of dealing with the described tension it is possible to carry out successful ELSA research. However, in this chapter I have addressed the methodological implications of the outlined role divergence. What does it mean for empirical research when the interviewer is perceived as ethics police? How do interviewees talk to someone they perceive as nagger or as ignorant novice? What do they tell someone they expect to

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promote genetic medicine or deliver messages to policy makers? What are the limitations of communication processes carried out in a friend or foe fashion? Against the backdrop of these challenging methodological issues, some important conclusions can be drawn on the basis of the presented empirical data. Social construction: Communication under the described circumstances can only be meaningfully interpreted if understood as social construction. What is being said about genetic medicine and bioscientific research during the research interview, is not a representation of reality, but is a carefully tailored construction aiming to produce a particular effect on a specific addressee. For that reason, it is necessary to unveil the directedness and constructedness of verbal articulations in the interview. The goal of the interpretation is not the exposure of allegedly “false” accounts, but the identification of the construction principles, the goals pursued and the conditions that pre-structure the observed articulations. Strategic communication: The second point to be made concerns the strategic nature of the communication in the context of empirical ELSA research. It is crucial to data interpretation to consider that professionals of genetic medicine always anticipate the consequences of what they present to the interviewing researcher. This filter of possible effects is never removed. Social interaction in general and during an interview in particular is shaped by mutual assumptions about the other and strategic reactions upon these assessments (Alasuutari 1995; Goffman 1959). Limited openness: It is evident that interviewees try not to say anything that may be to their own disadvantage. It follows that not everything is accessible to the research interview. Especially when interviewing persons with clearly pronounced interests in the context of investigation the conversation will quickly reach the limits of openness. However, interviewees were repeatedly found to speak frankly about other actors. Problematic aspects within colleagues’ areas are more likely to be addressed than those in one’s own domain. Chances: Indeed, the communication during ELSA research is not always hostile. There is rich evidence that professionals of genetic medicine see their conversation with social scientists and their colleagues from the humanities as an opportunity to utilise the occasion. Especially when the client of ELSA research is a potential or actual funding provider of bioscientific research such opportunities are actively sought. Interviewing ELSA researchers regularly receive messages they are supposed to convey to funding bodies and science policy actors. The same was found regarding messages to regulatory actors. Deficit model: ELSA researchers explain that the ways in which professionals of genetic medicine talk to them during the research interview regularly follows a communication style Brian Wynne called “deficit model” (Wynne 1991; 1993). Bioscientists and physicians of genetic medicine are ambitious to utilise their scientific expertise in order to overcome the lack of knowledge they ascribe to their addressees.

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With this communicative strategy, professionals of genetic medicine aim to win support for their own domain. Little reflection: The specific organisational conditions and the corresponding problem framing of ELSA research create research situations that leave only little room for open reflection of unresolved problems. This observation confirms the fact that professionals of genetic medicine often perceive ELSA research as a form of control. Both ELSA researchers and their colleagues from the life sciences are challenged to make the best of this situation and to seek mutual benefits. The lack of reflexivity, however, can be interpreted as a consequence of an organisational constellation in which ELSA research is perceived as potentially harmful when critical aspects about genetic medicine and bioscientific research are made public. Summing up, it can be concluded, that under the given circumstances empirical ELSA research faces some considerable challenges. It is important to bear in mind that shared background knowledge is a precondition of any human communication (cf. Giddens 1997 [1989]:79). Hence, it is essential for the interpretation of what happens during the research process to develop a thorough understanding of the social context under investigation. This includes especially the context in which ELSA research has emerged and why the ethical and regulatory issues were put on the funding agenda. Considerable methodological difficulties were identified regarding the application of the research interview under these circumstances. However, despite the acknowledged limitations of the research interview (cf. Silverman 2010), there are a number of reasons why this method is still meaningful. First of all, the research interview is a very efficient method of enquiry (cf. Bogner, Littig et al. 2005[2002]). Limited resources are certainly one of the main reasons why (expert) interviews are used so often. In most cases, there is simply not enough time and money available to justify participant observation. This is clearly a consequence of project-funded ELSA research. There are compelling reasons in favour of ethnographic methods. Anthony Giddens states that participant observation produces much richer information about social life than most other research methods. Once an understanding is developed of how a given group sees a situation from their perspective, empirical social research is in a much better position to explain why the actors involved behave the way they do (cf. Giddens 1997 [1989]:586). Despite the apparent strength of ethnographic methods, they also have their own limitations as Giddens continues to argue. It is only possible to study a relatively small group or community, and a lot depends on whether the researchers succeed in winning the trust of the individuals involved. If researchers fail to create these preconditions, the planned research cannot even begin (cf. Giddens 1997 [1989]:586). The methodological literature describes a number of other problems associated with ethnographic research, amongst the most prominent is to mention what is called “going native”. Loyalty bonds and sympathy easily result in a relationship to those under investigation that is likely to lose critical distance.

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It is certainly true that empirical methods of social enquiry have considerable limitations as acknowledged above. However, they also have their strength. Despite the described difficulties – or even because of them – the research interview brings to light some important findings. The fact that the communication during the interview is strategic provides vivid accounts of the condition of the field under investigation. The observed strategies demonstrate that today scientists in general, and professionals of genetic medicine in particular, need to justify their practices and how they use their resources. They need to comply with ethical standards, and demonstrate entrepreneurial competences. Not least, professionals of genetic medicine need to give an account of ethical, legal, and social aspects of their own research area and how they deal with them. Against this backdrop, it can be argued: precisely because professionals of genetic medicine a) act strategically, b) speak with limited openness, and also c) try to use their conversations with ELSA researchers as a chance to promote their interests and convey them to relevant decision makers, it is possible to unveil the condition of modern scientific practice. Research will only be funded if they can offer solid justifications of why their work is beneficial for society and preferably also contributes to innovation and economic growth. Scientists need to answer how they deal with ethical, legal, and social aspects of their work. Social scientists and their colleagues from the humanities ask these questions not simply as a result of their academic contemplation, but when they carry out ELSA research, they get enrolled into agendas that encourage them to ask these questions on behalf of the public. Ironically they engage in processes that allow science policy makers to delegate the justification of the allocation of public funds to those who receive it. This constellation was analysed as a neo-liberal governance strategy (cf. Maasen & Lieven 2006; Kurath 2009). Precisely because the mobilisation of support for their own work has become a prime task for scientists, these dynamics unfold during ELSA research. If the receivers of public funds engage in the deliberation of ethical, legal, and social aspects of their research, they substantially increase their chances of obtaining funding and political support. This is true not least because the scrutiny of ethical, legal and social aspects was made an integral part of how bioscientific research professionals of genetic medicine continue to promote their field and use a deficit model of communication to that end. Moreover, the current ways in which professionals of genetic medicine are brought together with researchers of the social sciences and the humanities was found to leave only little room for open reflexion. The fact that ELSA researchers are themselves actors of the networks which they strive to study, has significant effects on the research process. If it, however, matters, who ELSA researchers are, then the question arises, how they became the actors they are, and whether it is possible to change what constitutes them as such. This is precisely where subjectivisation processes come in. In chapter 12, I analysed the ways in which ELSA researchers constitute their own role in the research process. They do

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so by presenting themselves as collaborators, scholars, facilitators, and advocates. As I furthermore demonstrated, ELSA researcher cannot enact their self-constitute roles just like that, but they need to negotiate them with all other actors in the field. From this point of view, the four identified roles are not original archetypes of ELSA research, but they are already the results of complex negotiations. These negotiations were interpreted as subjectivisation processes in the sense of how the members of a network mutually act upon each other. Using classical sociological theory (Goffman 1959; 1981, Mead 1967[1934]) and recent methodological literature (Alasuutari 1995; Stanley & Slattery 2003; McCorkel & Myers 2003; Rubin & Rubin 2005), it was possible to bring to light the complex nuances of the interaction during the research process. Professionals of genetic medicine act upon their encounters through their strategic behaviour during the research interview; they evade the interviewer’s questions, aim to achieve specific effects with their answers, commission messages to decision makers, establish authority and hierarchy through the demonstration of expertise, or criticise the social sciences and the humanities (see chapter 13). Taken together, these communicative actions have an immediate effect on ELSA researchers as the addressee. As interviewers they react to how they are addressed and adjust their own communicative actions in accordance with their research goals. These subtle adjustments during the interview can be interpreted as a form of subjectivisation through which ELSA researchers and professionals of genetic medicine mutually act upon each other. Using a micro sociological analysis, I could demonstrate how the outlined mechanisms evolve during the research process. In the social sciences, face-to-face interaction is considered to be the basis of all social organisations, regardless of how complex they are. Anthony Giddens explains, however, that this claim needs to be complemented with macro analysis to understand the institutional background of everyday life, since the ways in which people pursue their daily lives strongly depends on institutional frameworks in which they are embedded (cf. Giddens 1997 [1989]:93). Subjectivisation processes are consequently a result of concrete human interaction through which they act upon each other, but at the same time these practices are prestructured by larger networks as the example of ELSA research demonstrates. It is crucially important to consider that the ways in which ELSA researchers and professionals of genetic medicine relate to each other is by no means merely a matter that fully lies in their own hands. In significant ways, these processes are pre-structured through the context in which these actors are situated. Who social scientists and their colleagues from the humanities are for their encounters depends to a large degree on how ELSA research is organised. Who ELSA researchers are can only be fully understood if the historical context is taken into account, in which the life sciences have evolved; including the controversies that accompanied this process and the policy measures initiated to deal with public protests (see chapter 7). Against this

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backdrop, ELSA research is an institutional response to the concerns raised in relation to bioscientific research. It was a strategic operation that made possible the funding of the Human Genome Project (cf. Cook-Deegan 1994; McCain 2002) and similar bioscientific research in its wake. Due to their significance, I discuss the sciencepolicy framework that shaped and organised the context of ELSA research in the remaining chapter of this study.

15 Why science policy context matters

With a focus on subjectivisation processes, I have scrutinised how the engagement in the study of ethical, legal, and social aspects of genetic medicine constitutes the individuals involved as subjects of the research process. Thereby I used an action oriented definition of subjectivity, which implies to understand the actors through their practices. Michel Foucault’s analytical framework was used as a theoretical approach to distinguish three, different, but nevertheless intertwined subjectivisation practices: discursive practices that constitute the subject of knowledge, practices through which individuals act upon others and finally practices through which human beings act upon themselves (cf. Foucault 1997[1983]:262). The approach to define who actors are on the basis of their practices is also proposed by many other authors (cf. Latour 1999b:122). Also, Erwing Goffman followed a similar approach for his empirical studies. He aimed to reveal the actions through which human beings influence the actions of others (Goffman 1959:18). Seen from this perspective, the subject ELSA researcher is a product of the research process that is shaped through very specific circumstances and in the context of very particular framework conditions. Of course, the subjects contribute to their own subjectivisation practices, but at the same time they are also co-constituted through the actions of others as well as through the discourses about ethical, legal, social and certainly also economic aspects of genetic medicine. In the previous chapter, I discussed from a methodological point of view, how the analysed subjectivisation processes affect the research process and how they influence the possibilities of ELSA research under the given circumstances. I such a way, I highlighted the limitations of ELSA research resulting from the specific organisational constitution of this type of research. If, however, ELSA research is shaped by the socio-political framework conditions and the behaviour of other social actors then it is consequently necessary to problematize the shaping of these socio-political framework conditions. To be clear, it is crucially important to understand ELSA research as a context-dependent undertaking, but it is equally important to appreciate

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that precisely these contextual conditions are themselves the result of shaping processes. For that reason, I would like to conclude this study with discussion of the shaping of the framework conditions of ELSA research through science governance practices.

15.1 G OVERNING During the 18th and 19th Century, the modern sciences have developed in the spirit of the Enlightenment. At the time the scientists demanded autonomy for their practice. This demand was brought forward as the claim to determine one’s own laws. This claim was directed against the state and the clergy and it frankly told these two prime authorities: your power does not stand above the truth. It requires courage – to draw on Kant’s famous words – to confront King and bishop with the limitations of their power (cf. Kant 1994[1785]). Not much earlier, scholars risked their lives when questioning the authority of the state and the clergy in order to determine the truth. Social scientists do not only claim to determine what the case is, but they also seek the truth about what is unjust and discriminatory. Especially when related to economic issues, this claim is a matter of power. If it is the case that communal resources are wasted or unequally distributed, then this statement is not merely a matter of truth. The same goes for the identification of discriminatory effects of social actions – such as the pursuit of bioscientific research and medical practices. For that reason, courage is still required of social scientists and their colleagues from the humanities in order to raise questions such as the following: who benefits from genetic medicine and which social group pays the price? The matters of truth remain to be a matter of power. Truth claims are negotiated in court, such as whether a particular seed was actually used without licence or if some varieties have cross-pollinated with others on neighbouring fields. Truth claims are brought to court to determine liability claims regarding side effects of particular drugs. Courts decide what companies can be held liable for and who is allowed to say what about which firm. Lawmakers determine what physicians are responsible for and where their liability ends. However, a number of issues are still unresolved. For that reason there is a need for procedures that allow the deliberation of responsibility for scientific research and its consequences. ELSA research scrutinises these issues, and examines possible discriminatory effects, discusses the right-not-to-know and weighs the right of self-determination against the rights of others. However, ELSA research has so far hardly asked if the funding of the life sciences has led to a reasonable return on investment. Today, courage is certainly required in order to raise questions of the latter type. It can be noted that the framing in terms of “ethical, legal and social aspects” does not problematize

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science-policy decisions, but rather the practices of the actualisation of bioscientific knowledge. Today, it can be stated that science is governed more than ever before. Autonomy in the sense of self-governing certainly does not describe the current state of affairs. This applies to both to scientific and to higher education. Without public funding, a lot of research would simply not exist. Policy-makers also shape the conditions under which science is thought and expected to (re-)produce the human resources for the economy. The governance of science becomes most obvious through the so called audit-culture. The term signifies the multiple and continuous efforts to measure, assess and control scientific achievements (cf. Mathieu, Meyer et al. 2008; Mirowski & Van Horn 2005; Mirowski & Sent 2008). Audit practices put into effect a highly intensive regime of governing. A significant part of such controlling governance is, however, carried out through peer review by the scientists themselves. Also, ELSA research exercises a specific function in this governance practice insofar as it performs the monitoring of ethical, legal, and social aspects of modern bioscientific research and genetic medicine in clinical practice. It should be added that there are indeed a number of reasons to justify why scientists are encouraged to give an account about their work. Precisely because scientific research is sponsored with public funds, there is a need to explain the use of these resources to those who provide them. Under these circumstances, it is problematic to claim the right to autonomously determine one’s own research agenda, especially if communal resources are used for that sake. Thus, governing practices are implemented into scientific practices such as peer review and evaluation through which scientists mutually act upon each other’s research practices. The governance of scientific practices can also be observed on a discourse level. The key function of science policy discourses is to define the goals of scientific enquiry. Through the media these discourses are enacted in public. For that reason, science policy discourses reach an audience far beyond scientists and decision makers. Hegemonic science policy discourses draw on economic growth, commodification of knowledge and the possibility to reduce the costs of governmental welfare provision; especially for health and the care of the elderly (cf. OECD 2010:2; OECD 2011:120; European Commission 2011a:13; BMWF 2008b:7). Catchwords like competitiveness, knowledge society, bio-economy, innovation and the provision of young scientists characterise this governance agenda. Those who are able to inscribe themselves into these discourses will have their work recognised as funding eligible. By means of competitive application for public research funds, scientists are encouraged to conform to the guidelines of the economically oriented science-policy regime. I understand the outlined processes as a deeper change of the university system. A chance that currently takes place in the Western world. The funding of bioscientific

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research and the specific ways to organise it – including its coupling to reflexion of ethical, legal, and social aspects – are part of this transformation. Under the circumstances of the present science-policy paradigm, bioscientists like no one else have succeeded to make promises that raise expectations while at the same time pointing at their own importance in order to achieve them (cf. Brown, Kraft et al. 2006; Brown & Kraft 2006). Nobody compares with bioscientists in how they succeeded to mobilise monetary support, political patronage and public attention for their endeavour. Without a doubt, with their promises, bioscientists have contributed to the creation of a regime that is the framework for the conditions under which they are now enabled and required to carry out their research. However, ELSA researchers are also part of this arrangement. They are no outsiders, but, with their contributions, they make bioscientific research possible in the first place under the given circumstances. Drawing loosely on Michel Foucault (Foucault 1991[1975]) I argue that ELSA researchers contribute to the creation and maintenance of the bioeconomic regime; their contribution has this effect even if they define and experience their work as criticism. Seen from this point of view, ELSA research fulfils a specific task. Through its coupling to bioscientific research programmes, it becomes possible for the funding provider to withdraw from the task to explain to the public why a particular area deserves support with public funding and to suggest a way of dealing with the ethical, legal, and social aspects of the respective area of research. The ELSA model allows science policy-makers to delegate the answering of these questions. The deliberation can be delegated to social scientists and their colleagues from the humanities, who take on the task to enquire how professionals of genetic medicine about their approach to the respective problem areas (cf. Maasen & Lieven 2006). The arrangement of the integrated (collaborative) ELSA research stimulates the social field which it organises to justify why bioscientific research should be funded and how one can deal with its ethical, legal, and social aspects. In this arrangement, ELSA researchers are not enrolled as arbiters of bioscientific research. Their task is not to decide who should and who should not receive funding, but it is the function of ELSA researchers to stimulate discourse and contribute to them. It is the stimulation of these discourses that sets in motion a process which requires funding recipients to take over the task of decision makers of justifying to the public science policy decisions to fund the life sciences. In order for this form of science governance to function, a) project style research funding is essential, and furthermore, b) the specific coupling of professionals of genetic medicine with social scientists and their colleagues from the humanities is of central importance. Calls for projects typically require c) a convincing outline of appropriate measures to disseminate the results of the proposed project (i.e. the results should not only be presented to the peer community, but especially to the broader public). The communication about one’s own research practices has become a core element of the current science-policy paradigm.

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Financial resources are only awarded temporarily to those who succeed best to write their work into the discourse of a launched funding scheme. The project style framework allows steering interventions to a much higher degree as basic funding does. The intervention is, however, not directive, but it functions through a system of positive stimulation and the selection of projects that are most compliant with the respective call. Even though evaluation processes are still carried out by scientific peers, it is nevertheless possible for the funding provider to define the goals against which a given project needs to be evaluated. The decisive policy making tool to implement programmatic goals is the design of the call for projects. It is here where chief point for science-policy intervention lies. The execution of the programme guidelines is, however, delegated to the peer community of the applicants who are supposed to put into practice these guidelines when selecting and evaluating funded projects. At this point, I would like once more to recall the context in which ELSA research has emerged. Public controversies over bioscientific research and their application stood at the beginning of the ELSA model. In the 1970s, recombinant DNA-technology stood in the centre of public concerns. This controversy swapped over to Europe and peaked for a second time during the 1990s. Another decisive controversy was the abortion debate in the USA, which became a central political issue during the 1970s. Also Europe saw intense controversies about the new reproductive technologies, which apart from abortion concerned in particular in-vitro-fertilisation. At that time, intensive debates took place about the genetic diagnoses in reproductive medicine (cf. Bertazzoni, Fasella et al. 1990; Eser, Koch et al. 1990). Against the backdrop of these controversies, a number of Western governments were ambitious to secure their investments into bioscientific research. The acceptance of bioscientific research was considered to be a serious problem, which required appropriate action. The standard paradigm to react to this situation was the installation of research arrangements that brought bioscientists together with their colleagues from the social sciences and the humanities.

15.2 O PPORTUNITIES

FOR COOPERATION

The integration of social scientists and their colleagues from the humanities into bioscientific research is a chance to make the latter more reflexive and socially more robust. Many ELSA researchers take this view when they argue that their cooperation allows them to contribute to the shaping of the life sciences and their applications in medicine and beyond. The decisive element social scientists and their colleagues from the humanities add to bioscientific research is reflexivity which is expected to unfold guiding effects (cf. Zwart & Nelis 2009). From this perspective, direct feedback of the results of ELSA research is necessary to those whose professional practice

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is under scrutiny. Researchers who subscribe to this approach define their own role as “collaborator” as I have explained in chapter 12 of this volume. There are two important reasons used to argue in support of the collaborative model. The first argument is a theoretical. It is derived from a classical STS thesis. Trevor Pinch and Wiebe Biker (1984) argued that technological developments achieve a kind of closure (see also Bijker, Hughes et al. 1987; Bijker 1995). For that reason, it is very difficult to change a technology after such “stabilisation” and “closure” has been reached (cf. Bijker 1995:86 and 271; Pinch & Bijker 1984). This theoretical background leads to a call for the integration of reflexive processes into the development of technologies as early as possible. James Wilsdon and Rebecca Willis have programmatically urged to “go upstream” (cf. Wilsdon & Willis 2004; see also Stirling 2008). Consequently it is important to enter dialogue as early as possible in order to engage in upstream developments of new technologies. In such a way, it is expected to initiate deliberative processes that effect the position of points at a time when it is still possible to alter the trajectories of the development. This approach is also informed by experiences gained through participatory processes. Analysing these processes, it was found that such interventions take place too often at a time when the relevant decisions had already been made and the possibilities of change are actually very little (cf. Wilsdon & Willis 2004). The consequence of this assessment is the need to move upstream and to seek engagement as early as possible. European policy makers were accessible to this argument and tried to provide suitable conditions that allow for early engagement and the stimulation of upstream reflexive processes. To a certain extent the initiation of ELSA programmes in Europe can be interpreted as such an attempt. The preconditions of the integration of reflexive processes in bioscientific research are to be found controversies over new technologies during the 1970s and 1990s. Especially in Austria massive public protests have prevented governmental plans to promote and introduce new technologies and lead to significant financial losses and political failures (see chapter 7). A second argument in favour of collaborative engagement can be developed against the backdrop of experiences with antagonistic controversies and is pragmatically oriented towards effectiveness. Confrontational debates in which the opponents have positioned themselves, and essentially attack each other, are experienced as rather unproductive (cf. Wieser 2011e). For that reason, a need is identified to develop more constructive ways of deliberation. The key term to express this attempt is “dialogue”. The assumption behind this approach is that reflexive perspectives of social scientists and their colleagues from the humanities, as well as the views of users and patients, can only be integrated beneficially when remaining in dialogue with bioscientists and physicians of genetic medicine. For that reason, it is crucially important to maintain the dialogue process and prevent its breakup. Already Ferenc Fehér & Agnes Heller identified the refusal of dialogue as the main danger in the deliberation

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of techno-scientific issues and societal challenges (cf. Fehér & Heller 1995). Precisely for that reason, dialogue oriented ELSA researchers seek collaborative relationships with those whose professional practices they seek to study. The immediate way to realise a dialogue oriented approach, is to design research projects suitable to enhance mutual exchange and collaboration. It is, however, interesting to note that there are a number of programmatic publications, which seek to promote dialogue and collaboration (cf. Prainsack, Svendsen et al. 2010; Zwart & Nelis 2009; Rabinow & Bennett 2007; Calvert & Martin 2009). The authors of such publications do not only seek to reach their academic peers, but especially they aim to reach science policy makers in order to anchor the upstream and collaborative approach into science policy and the design of publicly funded research programmes. Arguing in favour of a particular approach, constitutes the authors of such publications as science-policy actors. They actively try to shape the conditions under which they carry out studies on ethical, legal, and social aspects of the life sciences. A different perspective on the collaborative approach is articulated by those who argue that collaboration leads to the inhabitation of criticality or even to the domestication of the social sciences and the humanities (cf. Rip 2009). Collaborative arrangements prevent the fundamental questioning of bioscientific research and genetic medicine since this would obviously lead to the breakup of the relationship. The projection of the relationship towards the future plays an important role in this regard. If access to the research field should be kept open in the future as well, criticism will only be voiced in a tamed form. This is especially important for empirical ELSA research. Researchers are challenged to find their own solution to balance future research opportunities with critical distance. Adrianna Kezar has pointed to the fact that future perspectives influence the research process. She notes: “The key within this tradition of elite interviewing is that researchers need to balance rights (academic freedom) and obligations. If researchers persist to challenge authority, they will impact researchers’ access to elite in the future and may develop opposition to social science research writ large” (Kezar 2003:398). ELSA researchers who mainly work with documents can access their data without the help of professionals of genetic medicine are in a rather different position. For that reason, the mentioned problem is primarily an issue for empirically oriented researchers. The significance of future perspectives obtains its momentum through economic necessities mainly enforced through project style funding arrangements. It is clear that the organisational arrangements shaped by science policy actors have a significant influence on how the individuals behave who work under these circumstances.

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15.3 T HE

PRACTICE OF CRITIQUE

The involvement of social scientists and their colleagues from the humanities in current developments of the life sciences aims at the integration of additional perspectives on bioscientific research and their application in clinical practice. The science policy rationale behind the initiatives to integrate an ELSA component into bioscientific research programmes can be interpreted as the attempt to make investments of public resources socially more robust and enhance their acceptance (see chapter 11). It was argued that this strategy seeks to integrate societal criticism into the process of techno-scientific development. It is open to debate whether these attempts are constructive contributions or instrumental domestications (cf. McCain 2002:113-114; Cook-Deegan 1994:248; Wexler 2003:406). The point I wish to address here is the practice of critiquing. In chapter 7, I argued that resistance to modern biotechnologies is an important precondition for the emergence of ELSA research and their integration into bioscientific research programmes (see also Wieser 2010a). The origin of these public controversies goes back at least as far as to the Asilomar Conferences of 1973 and 1975 in the USA (cf. Gottweis 1998:84; Krimsky 1982:70-80). Also, European biotech controversies during the 1990s significantly contributed to this dynamic. Social scientists and their colleagues from the humanities have investigated these controversies and also helped to organise and facilitate deliberative processes. This engagement raises the question about the relationship of social scientists and their colleagues from the humanities to the articulated criticism. Are they protagonists of this criticism? Do they represent those who articulate it? Or, do they abstain from a positioning and merely keep the minutes of a controversy that is essentially carried out by other social actors? Is their main contribution to organise and facilitate deliberation which they can analyse after the event? There is not a single answer to these questions that comprises the views of all social scientists and scholars of the humanities active in the field of ELSA research. The contributions are too diverse to reduce them to a common denominator. Therefore, I developed a typology to characterise the ways in which ELSA researchers constitute their own role in the process (see chapter 12). However, the question still remains how they relate to critique. For Immanuel Kant, the act of critique means to draw boundaries (Kant 1994[1785]). The boundaries Kant had in mind were those of human reason. For him, the most important philosophical task was to determine these boundaries of reason. However, Kant does not use critique to demarcate reason from a negative notion. What lies beyond is the thing-in-itself (“das Ding an sich”) which is a positive term in Kant’s philosophy although it is not accessible through experience. In such a way, Kant provided the epistemological foundation for the natural sciences which seek to answer the question: what is the case? There is, however, another dimension of critique, as Michel Foucault notes. He explains in a talk, held at the Societé française

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de philosophie that Kant aimed to determine another boundary, which is the boundary of truth in relation to power (Foucault 1992). For Kant, the establishment of the boundary between truth and power was the project of the enlightenment. Foucault’s reading of Kant is most relevant to the study at hand. The decisive question to ask is that about the organisation of critique. Where is critique articulated? How is it possible to perform critique as a social practice? What do we do to care for process of critiquing? Posing these questions raises organisational issues. I would like to conclude with discussing the conditions required for a fruitful development of the practice of critique. The organisational conditions of ELSA research are geared towards co-operative relationships between professionals of genetic medicine and their colleagues from the social sciences and the humanities. Integrative arrangements (in which ELSA research is made a part of bioscientific research programmes) pre-structure the ways in which critique can actually be performed. Especially framing in terms of ethics, regulation, and social aspects pre-structures the deliberation in specific ways. ELSA researchers monitor informed consent practices, try to find out whether patients can make their own choices, whether they are discriminated or how the encounters with genetic medicine affect their lives. However, there are a lot of issues not addressed with the ELSA framing. Most of all there are economic presumptions such as the idea of a bio-economy which are taken for granted. Growth constitutes the unquestioned economic paradigm of the knowledge society (cf. OECD 2010:2; OECD 2011:6872; European Commission 2010a:2; European Commission 2011a:13). The problematisation of ethical, legal, and social aspects leaves these larger framework conditions aside. The ELSA framing sets the research agenda and pre-structures what is made the object of analysis. The problematisation of political directives such as competitiveness, knowledge society, bio-economy as well as the medical standard paradigm remains neglected. Too often scientific knowledge is presented as unproblematic which only leads to difficulties when applied (cf. Jasanoff 2005:249). There is another aspect that should be mentioned here. It concerns the position of the researcher. It is a general tendency that academics work under conditions of reduced institutional security. Especially the situation of young researchers is economically precarious due to recent changes in the university system. However, critique needs a minimal amount of existential security. The act of critique requires courage, a fact pointed out by Immanuel Kant (1994[1785]) and Michel Foucault (1996). Those who speak the truth must not fear the reactions of the criticised. Foucault brings to mind historical examples of famous critics who had to put up with the consequences of their truth claims. Against this backdrop, it can be concluded that critiquing needs protection and suitable conditions to be articulated. For that reason, the first claim of critique is independence of the criticised. In present Western societies, the required independence is first of all an economic one. Those who need to make a living with their work have only limited

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possibilities to criticise who hold the power to withdraw the basis of their economic existence. Only the cynic can demand: stand out of my sunlight! This statement is attributed to Diogenes who said precisely that, when Alexander the Great asked him what he could do for the philosopher. It is indeed courageous to ask the world’s most powerful leader at the time to get out of the way. Foucault interprets this anecdote as a metaphor suggesting that power has to move away in order to allow the light of truth to shine (cf. Foucault 1996; Foucault 1992). It is possible to use this though as a point of departure for the organisation of the practice of critique in order to develop it as a fruitful “truth-practice”. Along these lines, it is again the structural implication of project-style funding that creates conditions less suitable for the practice of critiquing.

15.4 T HE ORGANISATIONAL OF ELSA RESEARCH

CHALLENGE

ELSA researchers stand at the cross roads between utility offers and autonomy claims. These two themes characterise the narratives by which ELSA researchers describe how they negotiate their actual research practice with other actors in the field and consequently, how they constitute themselves as researching subjects. It is a central argument of this study that social scientists and their colleagues from the humanities need to negotiate their own role with other actors in the field when scrutinising ethical, legal, and social aspects of genetic medicine in research and clinical practice. However, as important as direct encounters are, in which the individuals involved mutually act upon each other, as crucial it is to complement this perspective with the analysis of structural factors. Determining who ELSA researchers are, and what they can do during the research process, does not lie solely in the hands of the social actors who interact during the research encounter. In significant ways, ELSA research is shaped by contextual factors. The agenda of ELSA research is pre-defined through science policy makers and the research programmes they design. Moreover, I argue that the integral arrangement of ELSA research into large bioscientific research initiatives significantly shapes the relationship of the actors involved. For that reason, it can be argued that subjectivisation processes of ELSA researchers begin long before the latter start interacting with professionals of genetic medicine. This is precisely why it matters how ELSA research is organised. It matters for the ways in which social scientists and their colleagues from the humanities become subjects of ELSA research and it matters for the actual research practices carried out in the given framework. Against this backdrop, I argue that the ways in which ELSA researchers constitute their own role in the research process and how they are perceived by the other actors in the field need to be understood as a product of complex organisational arrangements in which these social practices are contextualised. There are three main

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dimensions of the organisational framework conditions that were found to play a decisive role in the practice of ELSA research and the subjectivisation of its actors:   

The coupling of bioscientific research with the study of its ethical, legal, and social aspects under one integral framework Project based funding schemes and the temporary appointment of the involved researchers The framing of ELSA research in terms of acceptance problems

ELSA researchers who are working in integral frameworks experience a certain degree of instrumentalisation (see chapter 14). They feel enrolled as “promoters” of the life sciences, as “messengers” who are expected to convey the interests of professionals of genetic medicine or as “social engineers” capable of generating public support and appreciation. Moreover, in integral frameworks ELSA researchers experience their relationship to professionals of genetic medicine as hierarchical. Power relations are enacted primarily via epistemological boundary work (Gieryn 1995; 1999). In the interviews conducted for this study, ELSA researchers explained that they find it difficult to talk about ethical, legal, and social aspects with professionals of genetic medicine when the latter assume that the reason behind the integral framework is to control, audit or even police their professional practice. Furthermore, it was found that the stimulation of collaborative relationships creates loyalty-bonds and mutual dependencies that domesticate critiquing as I have outlined in chapter 13. Project based funding is decisive policy instrument deployed to govern the life sciences; this applies to both bioscientific and ELSA research. Calls for projects allow science policy makers to define research agendas, to arrange for competition between the applicants, and to select proposals that comply with desired policy objectives (cf. Grimpe). Most importantly, project based funding creates economic uncertainty especially for early stage researchers especially when working on temporary contracts. The lack of institutional standing and economic uncertainty endorse conformity and tame criticism. Also, orientation towards future collaboration in projects to come contributes to the same effect. The combination of the two outlined organisational elements intensifies their governance effect. This is especially the case when awarded research grants are evaluated under integral frameworks that deploy mixed review boards. Neither professionals of genetic medicine nor their colleagues from the social sciences or the humanities are “autonomous” (in the sense of self-governance) in reviewing their work amongst their own peers. It is clear that interrelated institutional arrangements affect the process of quality control and the criteria deployed for this purpose. All these factors entail a toe-hold to govern the ways in which social scientists and their colleagues from the humanities engage in the deliberation of modern techno-scientific

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developments. It becomes possible to domesticate criticism when collaboration between bioscientists and their colleagues from the social sciences and the humanities is made a funding requirement. Collaborative arrangements constitute professionals of genetic medicine as the prime addressee of ELSA research. This moves policy makers out of focus and easily overlooks them as relevant actors in the governance of the life sciences. The third aspect regarding the organisation of ELSA research concerns the problem framing. The interviewed ELSA researchers repeatedly pointed out that they found it difficult and unconstructive to work when the life sciences were framed in terms of public controversies and acceptance problems (see chapter 12). Quite consistently ELSA researchers seek to promote dialogue. The focus on public controversies and acceptance problems was experienced as rather limiting and even considered to inhibit the ways in which ELSA researchers and their colleagues from the life sciences relate to each other. Yet again, it is crucial to acknowledge that it is not only in their hands to define the problem that constitutes the relationship to the other actors in the field (cf. Latour 1999b; Berger 2010). The controversial public uptake of techno-scientific developments has a history that goes far beyond genetic medicine (cf. Nelkin 1992; 1995; Bauer 1997[1995]). Especially in Austria, this historical context plays a decisive role, as I have argued in chapter 7. When studying subjectivisation processes in the context of ELSA research, it is necessary to understand the interplay between science, politics, and the public (see chapter 11). The fact that these three domains are mutually interrelated with one another is crucially important for the study at hand. Against this backdrop, I interpret the introduction of ELSA research as a science policy tool to govern genetic medicine in research and clinical practice. It is a decisive function of ELSA research to govern the actors in the field (including both professionals of genetic medicine as well as ELSA researchers) by subjectifying them in specific ways. In this process, social scientists and their colleagues from the humanities act upon professionals of genetic medicine and vice versa. In doing so they are they are never fully free, since they are already enrolled in larger socio-political contexts. It is decisive how the actors in the field of genetic medicine are brought together. These arrangements pre-define their relationship even though and despite the fact that they can act upon the other actors in the field. The conclusion to be drawn is that the shaping of the circumstances under which social scientists and their colleagues from the humanities study science and technology is an issue of concern; not only because it affects their work methodologically, but also because it shows what it means to work as an academic today.

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15.5 S UBJECTIVISATION Social scientists and their colleagues from the humanities have found a variety of different strategies to study ethical, legal, and social aspects of genetic medicine in research and clinical practice. Constituting their own role in the research process as collaborators, scholars, facilitators, or advocates was interpreted as an important dimension of subjectivisation (see chapter 12). However, the ways in which ELSA researchers become who they are in the context of their work does not solely depend on how they define their own role in the research process. Using a Foucauldian perspective, subjectivisation can be understood as the interplay of three processes: a) knowledge practices through which human beings become constituted as subjects of knowledge, b) practices through which human beings act upon others and make them who they are, and c) practices through which human beings act upon themselves and make themselves who they are (cf. Foucault 1997[1983]:262; Foucault 1982:208; Foucault 1997[1981]:177). In light of the empirically grounded findings of this study, it can be explained how the individuals involved become who they are in the context of genetic medicine. The first axis of analysis concerns powerful master narratives shaped by supranational policy actors that urge academics to act in specific ways (see chapter 10). Above all, it is science-policy directives of the OECD und the European Commission that discursively constitutes the subject of knowledge. This subject of knowledge is, however, not a universal one that is defined through epistemological theories, but it is a specific one. Professionals of genetic medicine need to demonstrate particular qualities in order to be in a position to engage in the production of bioscientific knowledge. In other words, the classical philosophical question “how to access truth” gave way to the mundane “how to access research funds”. However, precisely because the acquisition of resources has become a central prerequisite for the pursuit of knowledge the criteria to demonstrate funding eligibility have become a powerful toe-hole for the governance of science. Today, scientists who seek to study the genetic foundations of life are encouraged to demonstrate accountability, responsibility and how they generate societal benefit in order to become subjects of knowledge in the described sense. They are stimulated to give an account of their work in public, to explain how they deal with ethical issues, and how their work benefits society, preferably in economic terms. ELSA researchers have a share in this arrangement. It is them who approach professionals of genetic medicine and ask the latter questions about ethical, legal, and social aspects of their work. Against the backdrop of a Foucauldian perspective, ELSA research can be analysed as a practice through which social scientists and their colleagues from the humanities discursively act upon professionals of genetic medicine. In such a way, ELSA researchers subjectify those whose work they study.

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ELSA research executes an intervention into the field of the life sciences, which is why it can be analysed as a specific science governance instrument. This has major consequences on the subjectivisation of the ELSA researcher. The first point to mention is that ELSA researchers have become actors of the field they strive to study (cf. Berger 2010). However, the professionals of genetic medicine know about these wider science-policy implications, and for that very reason, they act strategically towards those who come to scrutinise the ethical, legal, and social aspects of their work. The analysis of the research encounter leads to an important conclusion. Professionals of genetic medicine and ELSA researchers mutually subjectify each other by means of complex strategic interaction through which they act upon each other. Ewing Goffman’s (1959) classical sociological approach was used to bring to light the methodological implications of these strategic encounters (see chapter 14). It is crucial to understand that this process of mutually acting upon each other is a result of the specific arrangement that brings professionals of genetic medicine together with their colleagues from the social sciences and the humanities. The encounter does not happen just like that, it is a deliberately arranged relationship initiated through the provision of research funds and framed by the respective programme design. The chosen perspective is particularly fruitful because it highlights the fact that the described subjectivisation processes would not become as effective as they are without the active contribution of the actors involved. This applies to both professionals of genetic medicine as well as to ELSA researchers. Foucault refers to the active contribution of the subject as self-technologies, i.e. as practices through which individuals act upon themselves (cf. Foucault 1997[1983]). It is through the ways in which professionals of genetic medicine present themselves and their work that they constitute themselves as accountable, responsible and entrepreneurial subjects whose work will ultimately benefit society as a whole. Science-policy discourses become effective because those who apply for funding write themselves into these master narratives and enrol in the performance of accountability enacted via ELSA research. The analysed governance strategy unfolds its efficacy through the example of individuals benefitting from enrolling in the stimulated subjectivisation processes. They will perform more successfully in the competition for the resources necessary for modern bioscientific research. Of course, social scientists and their colleagues from the humanities contribute to their subjectivisation as ELSA researchers as well. They do so by constituting themselves as collaborators, scholars, facilitators or advocates. With these four different roles, they have succeeded in constituting themselves as researchers who are able to contribute to making genetic medicine happen. The empirical analysis has, however, also demonstrated that the actors involved are neither fully free nor entirely domesticated. Even if their scope of action is significantly prestructured by the science-policy framework in which they study ethical, legal, and social aspects of genetic medicine ELSA researchers always have space to manoeu-

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vre. The challenge remains to develop individual solutions in concrete research contexts as well as a collective task to engage in the shaping of the framework conditions under which the social studies of science and technology can be carried out.

Bibliography

Abels, Gabriele (2007). “Citizen Involvement in Public Policy-making: Does it Improve Democratic Legitimacy and Accountability? The Case of pTA”. Interdisciplinary Information Sciences, 13 (1), pp. 103-116. Abels, Heinz (2006). “Identität. Über die Entstehung des Gedankens, dass der Mensch ein Individuum ist, den nicht leicht zu verwirklichenden Anspruch auf Individualität und die Tatsache, dass Identität in Zeiten der Individualisierung von der Hand in den Mund lebt”. Wiesbaden: VS-Verlag für Sozialwissenschaften. Agamben, Giorgio (1995). “Homo sacer. Die souveräne Macht und das nackte Leben”. Frankfurt/Main: Suhrkamp. Alasuutari, Pertti (1995). “Researching Culture. Qualitative Method and Cultural Studies”. London et al.: Sage. Albert, Mathieu (2003). “Universities and the Market Economy: The Differential Impact on Knowledge Production in Sociology and Economics”. Higher Education, 45 (2), pp. 147-182. Andermann, Anne, Ingeborg Blancquaert, Sylvie Beauchamp, et al. (2008). “Revisiting Wilson and Jungner in the genomic age: a review of screening criteria over the past 40 years”. Bulletin of the World Health Organisation, 86 (4), pp. 317319. Arendell, Terry (1997). “Reflections on the Researcher-Researched Relationship: A Woman Interviewing Men”. Qualitative Sociology, 20 (3), pp. 341-368. Atkinson, Paul & David Silverman (1997). “Kundera's Immortality: The Interview Society and the Invention of the Self”. Qualitative Inquiry, 3 (3), pp. 304-325. Austria, Statistik (2006). “Jahrbuch der Gesundheitsstatistik 2005”. Wien: Verlag Österreich GmbH. Ball, David, Audrey Tyler & Peter Harper (1994). “Predictive testing of adults and children. Lessons from Huntington's disease”. In: Angus Clarke (Ed.). Genetic Counselling. Practice and Principles. London & New York: Routledge, pp. 6394.

332 | H OW GENES MATTER

Bammé, Arno (2003). “Wissenschaft und Wissenschaftsdidaktik, Gesellschaft und Wissenschaft in der Technologischen Zivilisation. Band 2: Deutungsvermittlung”. München & Wien: Profil. Bammé, Arno (2004). “Science Wars. Von der akademischen zur postakademischen Wissenschaft”. Frankfurt am Main: Campus. Bammé, Arno (2009). “Science and Technology Studies. Ein Überblick”. Marburg: Metropolis-Verlag. Barben, Daniel (2005). “Changing Regimes of Science and Politics: Comparative and Transnational Perspectives for a World in Transition”. In: Martin Lengwiler & Dagmar Simon (Eds.). New Governance Arrangements in Science Policy. Berlin: Discussion Paper ot the Wissenschaftszentrum Berlin, pp. 39-63. Bauer, Martin (Ed.) (1997[1995]). “Resistance to new technology: nuclear power, information technology and biotechnology”. Cambridge: Cambridge University Press. Beauchamp, Tom L. & James F. Childress (1994). “Principles of biomedical ethics / Tom L. Beauchamp, James F. Childress”. New York: Oxford University Press. Beck-Gernsheim, Elisabeth (1990). “Alles aus Liebe zum Kind”. In: Ulrich Beck & Elisabeth Beck-Gernsheim (Eds.). Das ganz normale Chaos der Liebe. Frankfurt am Main: Suhrkamp, pp. 135-183. Berg, Paul (2008). “Meetings that changed the world: Asilomar 1975: DNA modification secured”. Nature, 455 (7211), pp. 290-291. Berg, Paul, David Baltimore, Herbert W. Boyer, et al. (1974a). “Potential Biohazards of Recombinant DNA Molecules”. Proceedings of the National Academy of Sciences, 71 (7), pp. 2593-2594. Berg, Paul, David Baltimore, Herbert W. Boyer, et al. (1974b). “Potential Biohazards of Recombinant DNA Molecules”. Science, 185 (4148), pp. 303. Berger, Peter & Thomas Luckmann (1969). “Die gesellschaftliche Konstruktion von Wirklichkeit”. Frankfurt am Main: Fischer. Berger, Wilhelm (2006). “Towards an Ethics of Distributed Responsibility”. In: Wilhelm Berger, Sandra Karner & Bernhard Wieser (Eds.). Prenatal Testing: Individual Decision or Distributed Action. München, Wien: Profil. Science and Technology Studies, vol. 48, pp. 13-26. Berger, Wilhelm (2008). “Thesen zu einer Ethik des genetischen Testens”. Genetisches Testen. Einblicke und Ausblicke. Wilhelm Berger. Klagenfurt: IFF/TEWI, vol. 116, pp. 83-100. Berger, Wilhelm (2010). “Thesis on an ethics of genetic testing”. In: Bernhard Wieser & Wilhelm Berger (Eds.). Assessing Life: on the Organisation of Genetic Testing. München & Wien: Profil. Science and Technology Studies, pp. 51-65. Berry, Caroline A. (1994). “Genetic Counselling. A medical perspective”. In: Angus Clarke (Ed.). Genetic Counselling. Practice and Principles. London & New York: Routledge, pp. 29-43.

B IBLIOGRAPHY | 333

Bertazzoni, Umberto, Paolo Fasella, Andreas Klepsch, et al. (1990). “Human Embryos and Research. Proceedings of the European Bioethics Conference Mainz, 7-9 November 1988”. Frankfurt am Main/New York: Campus. Best, Amy L. (2003). “Doing Race in the Context of Feminist Interviewing: Constructing Whiteness Through Talk”. Qualitative Inquiry, 9 (6), pp. 895-914. BGBl. (2005). “Bundesgesetz, mit dem das Gentechnikgesetz geändert wird”. BGBl., Nr. 127/2005. Biernbacher, Dieter (1999). “Ethics and social science: which kind of co-operation?”. Ethical Theory and Moral Practice, 2 (4), pp. 319-336. Bijker, Wiebe E, Thomas P. Hughes & Trevor (Eds.) Pinch (1987). “The Social Construction of Technological Systems: New Directions in the Sociology and History of Technology”. Cambridge, London: MIT Press. Bijker, Wiebe E. (1995). “Of Bicycles, Bakelites, and Bulbs. Toward a Theory of Sociotechnical Change”. Cambridge, London: MIT Press. Blair, Tony (2002). “Science Matters”. (10 April), available at www.number10.gov.uk/output/Page1715.asp. Bloor, David (1991 [1976]). “Knowledge and Social Imagery”. Chicago: University of Chicago Press. Bloor, David (1999a). “Anti-Latour”. Studies In History and Philosophy of Science Part A, 30 (1), pp. 81-112. Bloor, David (1999b). “Reply to Bruno Latour”. Studies In History and Philosophy of Science Part A, 30 (1), pp. 131-136. BMWF (2008a). “3. Ausschreibung des Bundesministeriums für Wissenschaft und Forschung zur Förderung von Verbundprojekten im Rahmen des “Österreichischen Genomforschungsprogramms GEN-AU“ vom 01.02.2008”. Wien: BMWF, vol. 8. BMWF (2008b). “Österreichischer Forschungsdialog: Ergebnisdokumentation”. Wien: BMWF. Bodamer, Olaf A., G. F. Hoffmann & M. Lindner (2007). “Expanded newborn screening in Europe 2007”. Journal of Inherited Metabolic Disease, 30 (4), pp. 439-444. Bodmer, Walter (1985). “The Public Understanding of Science”. London: Royal Society. Bogner, Alexander (2004). “Partizipative Politikberatung am Beispiel der BürgerInnenkonferenz 2003”. Vienna: Institut für Technikfolgenabschätzung der Österreichischen Akademie der Wissenschaften. Bogner, Alexander (2005). “Grenzpolitik der Experten. Vom Umgang mit Ungewissheit und Nichtwissen in pränataler Diagnose und Beratung”. Weilerswist: Velbrück Wissenschaft. Bogner, Alexander, Beate Littig & Wolfgang Menz (Eds.) (2005[2002]). “Das Experteninterview. Theorie, Methode, Anwendung”. Wiesbaden: VS Verlag für Sozialwissenschaften.

334 | H OW GENES MATTER

Bogner, Alexander & Wolfgang Menz (2005[2002]). “Das theoriegenerierende Experteninterview. Erkenntnissinteresse, Wissensformen, Interaktion”. In: Alexander Bogner, Beate Littig & Wolfgang Menz (Eds.). Das Experteninterview. Theorie, Methode, Anwendung. Wiesbaden: VS Verlag für Sozialwissenschaften, pp. 33-70. Böhm, Andreas (2000). “Theoretisches Codieren: Textanalyse in der Grounde Theory”. In: Uwe Flick, Ernst von Kardorff & Ines Steinke (Eds.). Qualitative Forschung. Ein Handbuch. Reinbek bei Hamburg: Rowohlt, pp. 475-485. Böhme, Gernot, Wolfgang Van den Daele & Wolfgang Krohn (1973). “Die Finalisierung der Wissenschaft”. Zeitschrift für Soziologie, 2 (2), pp. 128-144. Bohnsack, Ralf (2001). “Typenbildung, Generalisierung und komparative Analyse: Grundprinzipien der dokumentarischen Methode”. In: Ralf Bohnsack, Iris Nentwig-Gesemann & Arnd-Michael Nohl (Eds.). Die dokumntarische Methode und ihre Forschungspraxis. Opladen: Leske + Budrich. Grundlagen qualitativer Sozialforschung, pp. 225-252. Bohnsack, Ralf (2002). “Dokumentarische Methode”. In: Ronald Hitzler & Anne Honer (Eds.). Sozialwissenschaftliche Hermeneutik. Stuttgart: Leske+Buderich. Borry, Pascal, Paul Schotsmans & Kris Dierickx (2004). “What is the role of empirical research in bioethical reflection and decision-making? An ethical analysis”. Medicine, Health Care and Philosophy, 7, pp. 41-53. Bröckling, Ulrich (2000). “Totale Mobilmachung. Menschenführung im Qualitätsund Selbstmanagement”. In: Ulrich Bröckling, Susanne Krasmann & Thomas Lemke (Eds.). Gouvernementalität der Gegenwart. Studien zur Ökonomisierung des Sozialen. Frankfurt am Main: Suhrkamp, pp. 131-167. Bröckling, Ulrich (2007). “Das unternehmerische Selbst. Soziologie einer Subjektivierungsform”. Frankfurt am Main: Suhrkamp. Bröckling, Ulrich, Susanne Krasmann & Thomas Lemke (2000). “Gouvernementalität der Gegenwart. Studien zur Ökonomisierung des Sozialen”. Frankfurt am Main: Suhrkamp. Brown, Nik & Alison Kraft (2006). “Blood Ties: Banking the Stem Cell Promise”. Technology Analysis and Strategic Management, 18 (3-4), pp. 313-327. Brown, Nik, Alison Kraft & Paul Martin (2006). “The Promissory Pasts of Blood Stem Cells”. BioSocieties, 1 (03), pp. 329-348. Brüsemeister, Thomas (2000). “Qualitative Forschung. Ein Überblick”. Wiesbaden: Westdeutscher Verlag. Bud, Robert (1995[1993]). “Wie wir das Leben nutzbar machten. Ursprung und Entwicklung der Biotechnologie”. Braunschweig & Wiesbaden: Vieweg. Burger, P. & W. F. Zierhofer (2007). “Introduction: Doing transdisciplinarity Analysis and reflection of a demanding scientific practice”. Gaia-Ecological Perspectives for Science and Society, 16 (1), pp. 27-28.

B IBLIOGRAPHY | 335

Bush, Vannevar (1960[1945]). “Science: The Endless Frontier. A report to the President on a Program for Postwar Scientific Research”. New York: American Council of Learned Societiess. Butler, Judith (1990). “Gender Trouble. Feminism and the Subversion of Identity”. New York & London: Routledge. Butler, Judith (2004). “Undoing Gender”. New York: Routledge. Callon, Michel (1986). “Some elements of a sociology of translation: Domestication of the scallops and the fishermen of St Brieuc Bay”. In: John Law (Ed.). Power, Action and Belief: A New Sociology of Knowledge? London: Routledge, Kegan Paul, pp. 196-233. Callon, Michel (1992). “The Dynamics of Techno-Economic Networks”. In: R. Coombs, P. Saviotti & V. Walsh (Eds.). Technological Change and Company Strategies: Economic and Sociological Perspectives. London: Academic Press & Harcourt Brace Jovanovich, pp. 72-102. Callon, Michel & Bruno Latour (1992). “Don't Throw the Baby Out with the Bath School! A Reply to Collins and Yearly”. In: Andrew Pickering (Ed.). Science as Practice and Culture. Chicago: Chicago University Press, pp. 343-368. Calvert, Jane (2006). “What's Special about Basic Research?”. Science, Technology & Human Values, 31 (2), pp. 199-220. Calvert, Jane & Paul Martin (2009). “The role of social scientists in synthetic biology”. EMBO Rep, 10 (3), pp. 201-204. Carter, C O (1976). “Risks of miscarriage after amniocentesis”. Journal of Medical Genetics, 13 (5), pp. 351. Catenhusen, Wolf-Michael & Hanna Neumeister (Eds.) (1987). “Chancen und Risiken derGentechnologie: Dokumentation des Berichts der Enquete-Kommission an den Deutschen Bundestag”. München: Schweitzer. Chadwick, Ruth F. (Ed.) (1990). “Ethics, Reproduction and Genetic Control”. London & New York: Routledge. Chadwick, Ruth F. (1997). “Das Recht auf Wissen und das Recht auf Nichtwissen aus philosophischer Sicht”. In: Franz Petermann, Silvia Wiedebusch & Michael Quante (Eds.). Perspektiven der Humangenetik: medizinische, psychologische und ethische Aspekte. Paderborn et al.: Ferdinand Schönigh, pp. 195-208. Charmaz, Kathy (2006). “Constructing Grounded Theory. A Practical Guide Through Qualitative Analysis”. London et al.: Sage. Cicourel, Aaron V. (1964). “Method and Measurement in Sociology”. New York: Free Press. Cicourel, Aaron V. (1970). “The acquisition of social structure: Toward a developmental sociology of language and meaning”. In: J. D. Douglas (Ed.). Understanding everyday life: Toward a reconstruction of social knowledge. Chicago: Aldine, pp. 136-168.

336 | H OW GENES MATTER

Clarke, Adele E., Janet K. Shim, Laura Mamo, et al. (2003). “Biomedicalization: Technoscientific Transformations of Health, Illness, and U.S. Biomedicine”. American Sociological Review, 68 (2), pp. 161-194. Collins, Harry M. (1983). “The Sociology of Scientific Knowledge: Studies of Contemporary Science”. Annual Review of Sociology, 9, pp. 265-285. Collins, Harry M. & Steven Yearly (1992). “Epistemological Chicken”. In: Andrew Pickering (Ed.). Science as Practice and Culture. Chicago: Chicago University Press, pp. 301-329. Commission of the European Communities (2000). “Commission Working Document: Science, society and the citizen in Europe”. Brussels: Commission of the European Communities. Cook-Deegan, Robert M. (1994). “The Gene Wars: Science, Politics, and the Human Genome”. New York: WW Norton & Company. Cox, Susan M. (1999). “'It's Not a Secret But ...' Predictive testing and Patterns of Communication about Genetic Information in Families At Risk for Huntington Disease”. Vancouver: Doctoral Dissertation, University of British Columbia. Cox, Susan M. (2006). “Paradoxes of Prenatal Testing and Their Consequences”. In: Bernhard Wieser, Sandra Karner & Wilhelm Berger (Eds.). Prenatal Testing: Individual Decision or Distributed Action? München, Wien: Profil. Science and Technology Studies, vol. 48, pp. 53-62. Cox, Susan M. (2010). “Genetic Testing and Experience of Identity: Some Neglected Dimensions”. In: Bernhard Wieser & Wilhelm Berger (Eds.). Assessing Life: on the Organisation of Genetic Testing. München & Wien: Profil. Science and Technology Studies, pp. 283-296. de Graaf, Irene M., Tjeerd Tijmstra, Otto P. Bleker, et al. (2002). “Women's Preference in Down Syndrome Screening”. Prenatal Diagnosis, 22 (7), pp. 624-629. de Jonge, Bram & Niels Louwaars (2009). “Valorizing science: whose values?”. EMBO Rep, 10 (6), pp. 535-539. Deleuze, Gilles (1999). “Foucault”. London: Continuum. Delpos, Manuela, Birgitt Haller, Jeny Marcelo, et al. (1998). “Demokratietheorie und Demokratieverständnis in Österreich”. Wien: BMWV. Denzin, Norman K. & Yvonna S. Lincoln (1994). “Introduction: Entering the Field of Qualitative Research”. In: Norman K. Denzin & Yvonna S. Lincoln (Eds.). Handbook of Qualitative Research. Thousand Oaks et al.: Sage, pp. 1-17. Dhondt, Jean-Louis (2007). “Neonatal screening: from the 'Guthrie age' to the 'genetic age'”. Journal of Inherited Metabolic Disease, 30, pp. 418-422. Dietz, Burkhard, Michael Fessner & Helmut Maier (1996). “Der “Kulturwert der Technik“ als Argument der Technischen Intelligenz für sozialen Aufstieg und Anerkennung”. In: Burkhard Dietz, Michael Fessner & Helmut Maier (Eds.). Technische Intelligenz und “Kulturfaktor Technik”. Münster, New York, München & Berlin: Waxmann, pp. 1-32.

B IBLIOGRAPHY | 337

Dolata, Ulrich (2008). “Soziotechnischer Wandel, Nachhaltigkeit und politische Gestaltungsfähigkeit”. In: Hellmuth Lange (Ed.). Nachhaltigkeit als radikaler Wandel. Die Quadratur des Kreises? Wiesbaden: VS Verlag für Sozialwissenschaften. Wiesbaden: VS Verlag für Sozialwissenschaften, pp. 261-286. Dolata, Ulrich & Raymund Werle (2007). “Bringing technology back in: Technik als Einflussfaktor sozioökonomischen und institutionellen Wandels”. In: Ulrich Dolata & Raymund Werle (Eds.). Gesellschaft und die Macht der Technik: Sozioökonomischer und institutioneller Wandel durch Technisierung. Frankfurt am Main: Campus, pp. 15-43. Downing, Melanie & Rodney Pollitt (2008). “Newborn bloodspot screening in the UK – past, present and future”. Annals of Clinical Biochemistry, 45 (1), pp. 1117. Drori, Gili S., John W. Meyer, Francisco O. Ramirez, et al. (2003). “Science in the Modern World Polity”. Stanford: Stanford University Press. Duster, Troy (1990). “Backdoor to Eugenics”. New York & London: Routledge. Edge, David (1995). “Reinventing the Wheel”. In: Sheila Jasanoff, Gerald E. Markle, James C. Petersen & Trevor J. Pinch (Eds.). Handbook of Science and Technology Studies. London: Sage, pp. 3-23. Eichler, Irmgard & Sylvia Stöckler-Ipsiroglu (2001). “Neugeborenenscreening auf Zystische Fibrose (CF)”. Monatsschrift Kinderheilkunde, 149 (12), pp. 13111318. Eser, Albin, Hans-Georg Koch & Thomas Wiesenbart (Eds.) (1990). “Tegelungen der Fortpflanzungsmedizin und Humangenetik 1”. Frankfurt am Main & New York: Campus. ESHG (2003). “Population genetic screening programmes: technical, social and ethical issues”. European Journal of Human Genetics, 11 (12), pp. 903-905. Etzkowitz, Henry & Loet Leydesdorff (1990). “The Second Academic Revolution: The Role of the Research University in Economic Development”. In: Susan E. Cozzens, Peter Healey, Arie Rip & John Ziman (Eds.). The Research System in Transition. Dordrecht, Boston & London: Kluwer, pp. 109-124. Etzkowitz, Henry & Loet Leydesdorff (2000). “The dynamics of innovation: from National Systems and “Mode 2” to a Triple Helix of university-industry-government relations”. Research Policy, 29, pp. 109-123. Etzkowitz, Henry, Marina Ranga, Mats Benner, et al. (2008). “Pathways to the entrepreneurial university: towards a global convergence”. Science and Public Policy, 35 (9), pp. 681-695. Europäischer Rat (2000). “Schlussfolgerungen des Vorsitzes”. Lissabon. European Commission (2002a). “Science and Society Action Plan”. Brussels. European Commission (2002b). “Towards a knowledge based Europe. The European Union and the information society”. Bruxeles. European Commission (2010a). “Europe 2020 Flagship Initiative Innovation Union”. Brussels: Communication from the Commission to the European

338 | H OW GENES MATTER

Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions. European Commission (2010b). “Europe 2020: A strategy for smart, sustainable and inclusive growth”. Brussels: Communication from the Commission. European Commission (2011a). “Green Paper on a Common Strategic Framework for EU Research and Innovation Funding. Analysis of public consultation”. Luxembourg: Publications Office of the European Union. European Commission (2011b). “Science, economy and society highlights 2010”. Bruxeles. European Society of Human Genetics (2003). “Population genetic screening programmes: technical, social and ethical issues. Recommendations of the European Society of Human Genetics”. Eur J Hum Genet, 11 (S2), pp. S5-S7. Everson, Ted (2007). “The Gene. A Historical Perspective”. Westport/CT & London: Greenwood Press. Ezrahi, Yaron (1990). “The Descent of Icarus: Science and the Transformation of Contemporary Democracy.”. Cambridge: Harvard University Press. Faden, Ruth R. & Tom L. Beauchamp (1986). “A History and Theory of Informed Consent.”. Oxford et al.: Oxford University Press. Fehér, Ferenc & Agnes Heller (1995). “Biopolitik”. Frankfurt & New York: Campus. Felt, Ulrike (1997). “Wissenschaft auf der Bühne der Öffentlichkeit: Die “alltägliche ” Popularisierung der Naturwissenschaften in Wien, 1900-1938”. Wien: Universität Wien. Felt, Ulrike (2002). “Wissenschaft, Politik und Öffentlichkeit - Wechselwirkungen und Grenzverschiebungen”. In: Mitchell G. Ash & Christian H. Stifter (Eds.). Wissenschaft, Politik und Öffentlichkeit. Von der Wiener Moderne bis zur Gegenwart. Wien: WUV-Universitätsverlag, pp. 47-72. Felt, Ulrike (2003). “O.P.U.S. - Optimizing Public Understanding of Science and Technology. Final Report”. Vienna: Department of Philosophy of Science and Social Studies of Science, University of Vienna. Felt, Ulrike, Maximilian Fochler, Astrid Mager, et al. (2008). “Visions and Versions of Governing Biomedicine”. Social Studies of Science, 38 (2), pp. 233-257. Felt, Ulrike, Maximilian Fochler & Anina Müller (2003a). “Sozial robuste Wissenspolitik. Analyse des Wandels von dialogisch orientierten Interaktionen zwischen Wissenschaft, Politik und Öffentlichkeit”. Vienna: Institut für Wissenschaftstheorie und Wissenschaftsforschung der Universität Wien Felt, Ulrike, Maximilian Fochler & Michael Strassnig (2003b). “Evaluierung des 'Diskurstag Gendiagnostik'. Analyse der dialogischen Wechselwirkun zwischen Wissenschaft und verschiedenen Öffentlichkeiten”. Vienna: Institut für Wissenschaftstheorie und Wissenschaftsforschung der Universität Wien. Filla, Wilhelm (2001). “Wissenschaft für Alle - Ein Widerspruch?”. Innsbruck, Wien & München: StudienVerlag.

B IBLIOGRAPHY | 339

Finetti, Marco & Armin Himmelrath (1999). “Der Sündenfall. Betrug und Fälschung in der deutschen Wissenschaft.”. Stuttgart: Raabe. Fischer, Frank (1999). “Technological deliberation in a democratic society: the case for participatory inquiry”. Science and Public Policy, 26 (5), pp. 294-302. Fisher, Erik (2005). “Lessons learned from the Ethical, Legal and Social Implications program (ELSI): Planning societal implications research for the National Nanotechnology Program”. Technology in Society, 27 (3), pp. 321-328. Fitzgerald, Mary (2007). “The EU gets tough on ethics”. Technology Ireland, 3, pp. 27-30. FLAG § 32, Bundesgesetz “Änderung des Familienlastenausgleichgesetz 1967, BGBL. Nr. 556/1986 STO226”. Fletcher, J. C., K. Berg & K. E. Tranøy (1985). “Ethical aspects of medical genetics. A proposal for guidelines in genetic counseling, prenatal diagnosis and screening”. Prog Clin Biol Res. , 177, pp. 511-523. Flick, Uwe, Ernst von Kardorff & Ines Steinke (Eds.) (2000a). “Qualitative Forschung. Ein Handbuch”. Reinbek bei Hamburg: Rowohlt. Flick, Uwe, Ernst von Kardorff & Ines Steinke (2000b). “Was ist qualitative Forschung? Einleitung und Überblick”. In: Uwe Flick, Ernst von Kardorff & Ines Steinke (Eds.). Qualitative Forschung. Ein Handbuch. Reinbek bei Hamburg: Rowohlt, pp. 13-29. Fonatsch, Christa, Franco Lacone, Jürgen Neesen, et al. (2007). “Department für Medizinische Genetik an der Medizinischen Universität Wien”. Medizinische Genetik, 2 (19), pp. 250-254. Fontana, Andrea & James H. Frey (1994). “Interviewing. The Art of Science”. In: Norman K. Denzin & Yvonna S. Lincoln (Eds.). Handbook of Qualitative Research. Thousand Oaks et al.: Sage, pp. 361-376. Foucault, Michel (1981). “Sexualität und Einsamkeit. Michel Foucault und Richard Sennett”. In: Michel Foucault (Ed.). Von der Freundschaft. Michel Foucault im Gespräch. Berlin: Merve, pp. 25-53. Foucault, Michel (1982). “The Subject and Power”. In: Hubert Dreyfus & Paul Rabinow (Eds.). Michel Foucault. Beyond Structuralism and Hermeneutics. Chicago: University of Chicago Press, pp. 208-226. Foucault, Michel (1984). “Eine Ästhetik der Existenz: Gespräch mit Alessandro Fontana”. In: Michel Foucault (Ed.). Von der Freundschaft. Michel Foucault im Gespräch, pp. 133-141. Foucault, Michel (1985). “Freiheit und Selbstsorge. Interview 1984 und Vorlesung 1982”. Frankfurt am Main: Materialis Verlag. Foucault, Michel (1990[1984]-a). “The Care of the Self. The History of Sexuality”. London, et al.: Penguin. Foucault, Michel (1990[1984]-b). “Die Rückkehr der Moral. Interview mit Michel Foucault”. In: Eva Erdmann, Rainer Forst & Axel Honneth (Eds.). Ethos der

340 | H OW GENES MATTER

Moderne. Foucaults Kritik der Aufklärung. Frankfurt am Main & New York: Campus, pp. 133-145. Foucault, Michel (1991[1975]). “Discipline and Punish. The Birth of the Prison”. London, et al.: Penguin Books. Foucault, Michel (1992). “Was ist Kritik?”. Berlin: Merve. Foucault, Michel (1992[1984]). “The Use of Pleasure. The History of Sexuality”. London, et al.: Penguin. Foucault, Michel (1996). “Diskurs und Wahrheit. Berkeley-Vorlesungen 1983”. Berlin: Merve. Foucault, Michel (1997[1981]). “Sexuality and Solitude”. In: Paul Rabinow (Ed.). Ethics. Subjectivity and Truth. New York: The New Press, pp. 175-184. Foucault, Michel (1997[1983]). “On the Genealogy of Ethics: An Overview of Work in Progress”. In: Paul Rabinow (Ed.). Ethics. Subjectivity and Truth. New York: The New Press, pp. 253-280. Foucault, Michel (1998[1976]). “The Will to Knowledge. The History of Sexuality Volume 1”. London et al.: Pinguin Books. Foucault, Michel (2002 [1977]). “Truth and Power”. In: James D. Foubion (Ed.). Power. London et al.: Pinguin Books. Essential Works of Foucault 1954-1984, vol. 3, pp. 111-133. Foucault, Michel (2002[1969]). “The Archeology of Knowledge”. Abingdon, Oxon: Routledge Classics. Foucault, Michel (2002[1994]). “For an Ethics of Diskomfort”. In: James D. Foubion (Ed.). Power: Essential Works of Foucault 1954 - 1984. London, et al.: Penguin. Essential Works of Foucault 1954 - 1984, pp. 443-448. Foucault, Michel (2004 [1997]). “Society Must be Defended: Lectures at the Collège de France, 1975-76”. London et al.: Pinguin Books. Foucault, Michel (2009[2004]). “Security, Territory, Population. Lectures at the Collège de France 1977-78”. Basingstoke: Palgrave Macmillan. Foucault, Michel (2010[2004]). “The Birth of Biopolitics. Lectures at the Collège de France 1978-79”. Basingstoke: Palgrave Macmillan. Foucault, Michel (2012[2008]). “Die Regierung des Selbst und der anderen”. Frankfurt am Main: Suhrkamp. Fox Keller, Evelyn (2001[2000]). “Das Jahrhundert des Gens”. Frankfurt am Main: Campus. Freitag, Daniela (2008). “Ein Blick in das Leben von Familien mit CF-Kindern”. Leben mit Cystischer Fibrose, 1, pp. 10. Freitag, Daniela (2010a). “Die Diagnose von Cystischer Fibrose bei Neugeborenen: Eine empirische Untersuchung zur Identitätskonstruktion betroffener Eltern”. Dissertation aus Soziologie, geisteswissenschaftlicher Studienzweig, zur Erlangung des akademischen Grades PhD, Vienna: University of Vienna. Freitag, Daniela (2010b). “Interrelated Identities: Being a Parent of a Child with Cystic Fibrosis”. In: Bernhard Wieser & Wilhelm Berger (Eds.). Assessing Life:

B IBLIOGRAPHY | 341

on the Organisation of Genetic Testing. München, Wien: Profil. Science and Technology Studies. Friedrichs, Günther (1999). “Der Wandel der Wissenschaft”. TA-Datenbank-Nachrichten, 8 (3/4), pp. 16-25. Funtowicz, Silvio O. & Jerome R. Ravetz (1993). “The Emergence of Post-Normal Science”. In: Rene von Schomberg (Ed.). Science, Politics and Morality. Scientific Uncertainty and Decision Making. Dordrecht: Kluwer. Galison, Peter L. (1999). “Image & Logic. A Material Culture of Microphysics”. Chicago & London: University of Chicago Press. Galison, Peter L. (1999[1997]). “Trading Zone. Coordinating Action and Belief”. In: Mario Biagioli (Ed.). The Science Studies Reader. New York & London: Routledge, pp. 137-160. Gannett, Lisa (2008). “The Human Genome Project”. Stanford Encyclopedia of Philosophy. Stanford, CA: Stanford University. Garfinkel, Harold (1967). “Studies in ethnomethodology”. Englewood Cliffs/NJ: Prentice Hall. Gibbons, Michael, Camille Limoges, Helga Nowotny, et al. (1994). “The new production of knowledge. The dynamics of science and research in contemporary societies”. London et al.: Sage Publications. Giddens, Anthony (1997 [1989]). “Soziologie”. Graz & Wien: Nausner & Nausner. Gieryn, Thomas (1983). “Boundary-Work and the Demarcation of Science from Non-Science: Strains and Interests in Professional Ideologies of Scientists”. American Sociological Review, 48, pp. 781-795. Gieryn, Thomas (1995). “Boundaries of Science”. In: Sheila Jasanoff, Gerald E. Markle, James C. Peterson & Trevor J. Pinch (Eds.). Handbook of Science and Technology Studies. Thousand Oaks et al.: Sage, pp. 393-443. Gieryn, Thomas (1999). “Cultural Boundaries of Science. Credibility on the line”. Chicago & London: The University of Chicago Press. Gill, Bernhard (1993). “Technology assessment in Germany's biotechnology debate”. Science as Culture, 4 (1), pp. 69 - 84. Gillam, L (1999). “Prenatal diagnosis and discrimination against the disabled”. Journal of Medical Ethics, 25 (2), pp. 163-171. Glaser, Barney G. & Anselm L. Strauss (1967). “The Discovery of Grunded Theory: Strategies of Qualitative Research”. Chicago: Aldine Publishing Company. Godard, Béatrice, Leo ten Kate, Gerry Evers-Kiebooms, et al. (2003). “Population Genetic Screening Programmes: Principles, Techniques, Practices, and Policies”. European Journal of Human Genetics, 11 (2), pp. 49-87. Godin, Benoît (2006). “The Knowledge-Based Economy: Conceptual Frameworks or Buzzword?”. Journal of Technology Transfer, 31, pp. 17-30. Goffman, Erving (1981). “Forms of Talk”. Philadelphia: University of Pennsylvania Press.

342 | H OW GENES MATTER

Goffman, Erving (2010[1959]). “Wir spielen alle Theater. Die Selbstdarstellung im Alltag”. München & Zürich: Serie Piper. Goffman, Erwing (1959). “The Presentation of Self in Everyday Life”. New York: Doubleday & Company. Gottweis, Herbert (1998). “Governing Molecules. The Discursive Politics of Genetic Engineering in Europe and the United States”. Cambridge, MA & London, UK: The MIT Press. Grabner, Petra (1999). “Technik, Politik und Gesellschaft: eine Untersuchung am Beispiel des österreichischen Gentechnikgesetzes”. Frankfurt am Main: Peter Lang. Grabner, Petra (2000). “Die österreichische Stimme im Chor europäischer Gentechnikpolitik”. In: Armin Spök, Karoline Hartmann, Bernhard Wieser, Andreas Loinig & Wagner Christian (Eds.). GENug gestritten?! Graz: Leykam, pp. 172198. Greco, Monica (2000). “Homo Vacuus. Alexithymie und das neoliberale Gebot des Selbstseins”. In: Ulrich Bröckling, Susanne Krasmann & Thomas Lemke (Eds.). Gouvernementalität der Gegenwart. Studien zur Ökonomisierung des Sozialen. Frankfurt am Main: Suhrkamp, pp. 265-285. Grießler, Erich (2008). “Die Entwicklung des österreichischen Gentechniggesetzes. Policy-Analyse im Hinblick auf die Genanalyse am Menschen und genetische Beratung”. Vienna: IHS. Grimpe, Christoph “Extramural research grants and scientists’ funding strategies: Beggars cannot be choosers?”. Research Policy (0). Grunwald, Armin (2007). “Umstrittene Zukünfte und rationale Abwägung. Prospektives Folgenwissen in der Technikfolgenabschätzung”. Technikfolgenabschätzung - Theorie und Praxis, 16 (1), pp. 54-63. Guthrie, Robert & Ada Susi (1963). “A simple phenylalanine method for detecting PKU in large populations of newborn infants”. Pediatrics, 32, pp. 338-343. Habermas, Jürgen (1966). “Verwissenschaftlichte Politik in demokratischer Gesellschaft”. In: Helmut Krauch, Werner Kunz & Ritte Horst (Eds.). Forschungsplanung. Eine Studie über Ziele und Strukturen amerikanischer Forschungsinstitute. München: Oldenburg Verlag, pp. 130–144. Habermas, Jürgen (1993[1988]). “Der Philosophische Diskurs der Moderne. Zwölf Vorlesungen”. Frankfurt am Main: Suhrkamp Taschenbuch Wissenschaft. Habermas, Jürgen (2001). “Die Zukunft der menschlichen Natur. Auf dem Weg zu einer liberalen Eugenik?”. Frankfurt am Main: Suhrkamp. Hagendijk, Rob & Alan Irwin (2006). “Public Deliberation and Governance: Engaging with Science and Technology in Contemporary Europe”. Minerva, 44 (2), pp. 167-184. Hagendijk, Rob P. (2004). “The Public Understanding of Science and Public Participation in Regulated Worlds”. Minerva, 42 (1), pp. 41-59.

B IBLIOGRAPHY | 343

Hajer, Maarten A. (2005). “Setting the Stage: A Dramaturgy of Policy Deliberation”. Administration & Society, 36 (6), pp. 624-647. Hallowell, Nina (1999). “Doing the right thing: genetic risk and responsibility”. Sociology of Health & Illness, 21 (5), pp. 597-621. Hallowell, Nina, Sarah Cooke, Gill Crawford, et al. (2009). “Distinguishing research from clinical care in cancer genetics: Theoretical justifications and practical strategies”. Social Science & Medicine, 68 (11), pp. 2010-2017. Hanekop, Heidemarie & Volker Wittke (2007). “Der Einfluss des Internets auf die Rekonfiguration des Systems wissenschaftlichen Publizierens”. In: Ulrich Dolata & Raymund Werle (Eds.). Gesellschaft und die Macht der Technik. Sozioökonomischer und institutioneller Wandel durch Technisierung. Frankfurt & New York: Campus, pp. 201-220. Hargreaves, Katrina , Jennifer Sinclair & Sandy Oliver (2007). “Evaluation of UK Newborn Screening Programme Centre Information Resources”. London: Social Science Research Unit, Institute of Education, University of London. Harper, Peter S., Sjef Gevers, Guido de Wert, et al. (2004). “Genetic testing and Huntington's disease: issues of employment”. The Lancet Neurology, 3 (4), pp. 249-252. Harris, Richard G. (2001). “The knowledge-based economy: Intellectual origins and new economic perspectives”. International Journal of Management Reviews, 3 (1), pp. 21-40. Hartog, Jennifer & Gerhard Wolff (1997). “Das genetische Beratungsgespräch”. In: Franz Petermann, Silvia Wiedebusch & Michael Quante (Eds.). Perspektiven der Humangenetik. Medizinische, psychologische und ethische Aspekte. Paderborn et al.: Ferdinand Schöningh, pp. 153-174. Hedgecoe, Adam (1998). “Geneticization, medicalisation and polemics”. Medicine, Health Care and Philosophy, 1, pp. 235-243. Heintz, Bettina (1993). “Wissenschaft im Kontext: Neuere Entwicklungstendenzen der Wissenschaftssoziologie”. Kölner Zeitschrift für Soziologie und Sozialpsychologie, 45, pp. 528-552. Hengstschläger, Markus (2006). “Die Macht der Gene. Schön wie Monroe, schlau wie Einstein”. Salzburg: ecowin. Hermanns, Harry (2000). “Interiviewen als Tätigkeit”. In: Uwe Flick, Ernst von Kardorff & Ines Steinke (Eds.). Qualitative Forschung. Ein Handbuch. Reinbek: Rowohlt, pp. 360-368. Hess, Rainer (2005). “Bekanntmachungen: Beschluss über eine Änderung der Richtlinien des Bundesausschusses der Ärzte und Krankenkassen über die Früherkennung von Krankheiten bei Kindern bis zur Vollendung des 6. Lebensjahres (Kinder-Richtlinien) zur Einführung des erweiterten Neugeborenen-Screenings vom 21. Dezember 2004”. Deutsches Ärzteblatt, 102 (16), pp. A 1158-A1163.

344 | H OW GENES MATTER

Hilgartner, Stephen (2000). “Science on Stage”. Stanford, CA: Stanford University Press. Hoeyer, Klaus L. & Richard Tutton (2005). “‘Ethics was here’: Studying the language-games of ethics in the case of UK Biobank”. Critical Public Health, 15 (4), pp. 385-397. Holm, Søren (2003). “Using empirical data”. Bulletin of Medical Ethics, 190 (August), pp. 8-11. Holm, Søren (2005). “An empirical approach”. In: Richard Ashcroft, Anneke Lucassen, Michael Parker, Marian Verkerk & Guy Widdershoven (Eds.). Case Analysis in Clinical Ethics. Cambridge: Cambridge University Press, pp. 201211. Honneth, Axel (1989). “Kritik der Macht. Reflexionsstufen einer kritischen Gesellschaftstheorie”. Frankfurt am Main: Suhrkamp Taschenbuch Wissenschaft. Honneth, Axel (2001). “Interview anlässlich der Frankfurter Foucault-Konferenz 2001”. Ausgestrahlt in: Dimensionen: Der Anwalt der Entrechteten. Wien, Österreichischer Rundfunk Ö1, 11.10.2001. Hope, Tony (1999). “Empirical medical ethics”. Journal of Medical Ethics, 25 (3), pp. 219-220. Hopf, Christel (2000). “Qualitative Interviews - ein Überblick”. In: Uwe Flick, Ernst von Kardorff & Ines Steinke (Eds.). Qualitative Forschung. Ein Handbuch. Reinbek: Rowohlt, pp. 349-360. Hund, Wulf D. (2008). “Ein Traum der Vernunft. Das weiße Eutopia des James Watson”. Blätter für deutsche und internationale Politik, 11/2008, pp. 73-80. Irwin, Alan (2006). “The politics of talk: Coming to terms with the “new” scientific governance”. Social Studies of Science, 36 (2), pp. 299-320. Irwin, Alan (2008). “STS Perspective on Scientific Governance”. In: Edward J. Hackett, Olga Amsterdamska, Michael Lynch & Judy Wajcman (Eds.). The Handbook of Science and Technology Studies. Cambridge/MA & London: MIT Press, pp. 583-607. Irwin, Alan & Mike Michael (2003). “Science, Social Theory and Public Knowledge”. Maidenhead: Open University Press. Irwin, Alan & Brian Wynne (1996). “Introduction”. In: Alan Irwin & Brian Wynne (Eds.). Misunderstanding Science? The Public Reconstruction of Science and Technology. Cambridge: Cambridge University Press, pp. 1-17. Jasanoff, Sheila (1995). “Product, process or programme: three cultures and the regulation of biotechnology”. In: Martin Bauer (Ed.). Resistance to new technology: nuclear power, information technology and biotechnology. Cambridge: Cambridge University Press, pp. 311-331. Jasanoff, Sheila (2003a). “Breaking the Waves in Science Studies: Comment on H.M. Collings and Robert Evans, 'The Third Wave of Science Studies'”. Social Studies of Science, 33 (3), pp. 389-400.

B IBLIOGRAPHY | 345

Jasanoff, Sheila (2003b). “Technologies of Humility: Citizen Participation in Governing Science”. Minerva, 41 (3), pp. 223-244. Jasanoff, Sheila (2005). “Designs on Nature. Science and Democracy in Europe and the United States”. Princeton and Oxford: Princeton University Press. Joerges, Bernward (1999a). “Die Brücken des Robert Moses. Stille Post in der Stadtund Techniksoziologie”. Leviathan, 27 (1), pp. 43-63. Joerges, Bernward (1999b). “Do Politics Have Artifacts?”. Social Studies of Science, 29 (2), pp. 411-431. Joss, Simon (1999). “Public participation in science and technology policy- and decision-making - ephemeral phenomenon or lasting change?”. Science and Public Policy, 26 (5), pp. 290-293. Joss, Simon (2005). “Lost in translation? Challenges for participatory governance of science and technolgy”. In: Alexander Bogner & Helge Torgersen (Eds.). Wozu Experten? Ambivalenzen der Beziehung von Wissenschaft und Politik. Wiesbaden: VS Verlag für Sozialwissenschaften, pp. 197-219. Joss, Simon & Sergio Bellucci (2002). “Participatory Technology Assessment – European Perspectives”. London: Centre for the Study of Democracy (CSD) at University of Westminster in association with TA Swiss. Joss, Simon & John Durant (Eds.) (1995). “Public participation in science: The role of consensus conferences in Europe”. London: Science Museum. Kant, Immanuel (1994[1785]). “Beantwortung der Frage: Was ist Aufklärung?”. In: Immanuel Kant (Ed.). Was ist Aufklärung? Aufsätze zur Geschichte und Philosophie. Göttingen: Vandenhoek und Ruprecht, pp. 55-61. Katz-Rothman, Barbara (1989[1986]). “Schwangerschaft auf Abruf”. Marburg: Metropolis Verlag. Kearnes, Matthew & Brian Wynne (2007). “On Nanotechnology and Ambivalence: The Politics of Enthusiasm”. NanoEthics, 1 (2), pp. 131-142. Kemper, Oliver (2010). “ELSA in der Genomforschung - eine vorübergehende Erscheinung?”. Österreichische Zeitschrift für Soziologie (special issue), pp. 13-31. Kenen, Regina (1994). “The Human Genome Project: Creator of the Potentially Sick, Potentially Vulnerable and Potentially stigmatized?”. In: Ian Robinson (Ed.). Life and Death unter Higher Technology Medicine. Manchester: Manchester University Press, pp. 49-64. Kerr, Anne (2003). “Rights and Responsibilities in the New Genetics Era”. Critical Social Policy, 23 (2), pp. 208-226. Kerr, Anne & Sarah Cunningham-Burley (2000). “On Ambivalence and Risk: Reflexive Modernity and the New Human Genetics”. Sociology, 34 (2), pp. 283304. Kerr, Anne, Sarah Cunningham-Burley & Amanda Amos (1997). “The new genetics: professionals' discursive boundaries”. Sociological Review, 45 (2), pp. 279-303. Kezar, Adrianna (2003). “Transformational Elite Interviews: Principles and Problems”. Qualitative Inquiry, 9 (3), pp. 395-415.

346 | H OW GENES MATTER

Kirton, John J. & Michael J. Trebilcock (2004). “Hard Choices, Soft Law: Voluntary Standards in Global Trade, Environment and Social Governance”. Ashgate & Aldershot. Kline, Ronald (1995). “Construing “Technology” as “Applied Science”: Public Rhetoric of Scientists and Engineers in the United States, 1880-1945”. Isis, 86 (2), pp. 194. Kluge, Susann (1999). “Empirisch Begründete Typenbildung. Zur Konstruktion von Typen und Typologien in der qualitativen Sozialforschung”. Opladen: Leske + Budrich. Koch, Lene & Mette Nordahl Svendsen (2005). “Providing solutions–defining problems: the imperative of disease prevention in genetic counselling”. Social Science & Medicine, 60 (4), pp. 823-832. Kowal, Sabine & Daniel C. O'Connell (2000). “Zur Transkription von Gesprächen”. In: Uwe Flick, Ernst von Kardorff & Ines Steinke (Eds.). Qualitative Forschung. Ein Handbuch. Reinbek bei Hamburg: Rowohlt, pp. 437-447. Krimsky, Sheldon (1982). “Genetic Alchemy”. Cambridge/MA & London/UK: MIT Press. Krohn, Wolfgang, Gernot Böhme & Wolfgang Van den Daele (1976). “Finalization in Science”. Social Science Information, 15 (2-3), pp. 307-330. Kröner, Hans-Peter (1997). “Von der Eugenik zum genetischen Screening: Zur Geschichte der Humangenetik in Deutschland”. In: Franz Petermann, Silvia Wiedebusch & Michael Quante (Eds.). Perspektiven der Humangenetik. Medizinische, psychologische und ethische Aspekte. Paderborn, München, Wien, Zürich: Ferdinand Schöningh, pp. 23-47. Kuczewski, Mark (1998). “Casuistry and Principlism: The Convergence of Method in Biomedical Ethics”. Theoretical Medicine and Bioethics, 19 (6), pp. 509-524. Kurath, Monika (2009). “Nanotechnology Governance”. Science, Technology & Innovation Studies, 5 (2), pp. 87-110. Küsters, Yvonne (2006). “Narrative Interviews. Grundlagen und Anwendungen”. Wiesbaden: VS Verlag für Sozialwissenschaften. Labitsch, Alfons (2002). “Health in the Era of Molecular Medicine - a Historical Perspective”. In: Antje Gimmler, Christian Lenk & Gerhard Aumüller (Eds.). Health and Quality of Life. Philosophical, Medical, and Cultural Aspects. Berlin et al.: Lit, pp. 199-217. Lamnek, Siegfried (1995a). “Qualitative Sozialforschung: Band 2: Methoden und Techniken”. Weinheim: Psychologische Verlags Union. Lamnek, Siegfried (1995b). “Qualitative Sozialforschung: Bd. 1: Methodologie”. Weinheim: Psychologische Verlags Union. Latour, Bruno (1993). “We habe never been modern”. Cambridge/MA: Harvard University Press.

B IBLIOGRAPHY | 347

Latour, Bruno (1999a). “For David Bloor ... and Beyond: A Reply to David Bloor's 'Anti-Latour'”. Studies In History and Philosophy of Science Part A, 30 (1), pp. 113-129. Latour, Bruno (1999b). “Pandora's Hope. Essays on the Reality of Science Studies”. Cambridge/MA & London: Cambridge Universyty Press. Lee, Yew-Jin & Wolff-Michael Roth (2004). “Making a Scientist: Discursive “Doing” of Identity and Self-Presentation During Research Interviews”. Forum Qualitative Social Research, 5 (1, art 12). Lemke, Thomas (2000). “Die Regierung der Risiken. Von der Eugenik zur genetischen Gouvernementalität”. In: Ulrich Bröckling, Susanne Krasmann & Thomas Lemke (Eds.). Gouvernementalität der Gegenwart. Studien zur Ökonomisierung des Sozialen. Frankfurt am Main: Suhrkamp, pp. 227-264. Lemke, Thomas (2002). “ʻDer Mensch ist, was er isst?ʼ Zur Nutrigenomik”. GenEthischer Informationsdienst, 18 (151), pp. 24-26. Lemke, Thomas (2003). “Molekulare Medizin? Anmerkungen zur Ausweitung und Redefinition des Konzepts der genetischen Krankheit”. Prokla: Zeitschrift für kritische Sozialwissenschaft, 132 (3), pp. 471-492. Lemke, Thomas (2004). “Veranlagung und Verantwortung. Genetische Diagnostik zwischen Selbstbestimmung und Schicksal”. Bielefeld: transcript Verlag. Lemke, Thomas (2007). “Gouvernementalität und Biopolitik”. Wiesbaden: VS Verlag für Sozialwissenschaften. Lemke, Thomas (2011). “Biopolitics”. New York & London: New York University Press. Lengwiler, Martin & Dagmar Simon (2009). “New Governance Arrangements in Science Policy”. Berlin: Wissenschaftszentrum Berlin für Sozialforschung. Lenhard, Johannes, Holger Lücking & Holger Schwechheimer (2006). “Expert knowledge, Mode-2 and scientific disciplines: Two contrasting views”. Science and Public Policy, 33 (5), pp. 341-350. Levidow, Les (2007). “European Public Participation as Risk Governance: Enhancing Democratic Accountability for Agbiotech Policy?”. East Asian Science, Technology and Society: An International Journal, 1 (1), pp. 19-51. Levitt, Mairi (2001). “Let the consumer decide? The regulation of commercial genetic testing”. Journal of Medical Ethics, 27 (6), pp. 398-403. Liebl, B., R. von Kries, U. Nennstiel-Ratzel, et al. (2001). “Ethisch-rechtliche Aspekte des Neugeborenenscreenings”. Monatsschrift Kinderheilkunde, 149 (12), pp. 1326-1335. Lieven, Oliver & Sabine Maasen (2007). “Transdisziplinäre Forschung: Vorbote eines “New Deal” zwischen Wissenschaft und Gesellschaft?”. GAIA, 16 (1), pp. 35-40. Lippman, Abby (1991). “Prenatal Genetic Testing and Screening: Constructing Needs and Reinforcing Inequalities”. American Journal of Law & Medicine, 17 (1 & 2), pp. 15-50.

348 | H OW GENES MATTER

Lippman, Abby (1994). “The Genetic Construction of Prenatal Testing: Choice, Consent, or Conformity for Women?”. In: Karen H. Rothenberg & Elisabeth J. Thomson (Eds.). Women and Prenatal Testing. Facing the Challenges of Genetic Technology. Columbus: Ohio State University Press, pp. 9-34. Liu, D. T. Y. (1992). “Chorionic villus sampling”. BMJ, 304, pp. 54. Loeber, J. G. (2007). “Neonatal screening in Europe; the situation in 2004”. Journal of Inherited Metabolic Disease, 30 (4), pp. 430-8. Löffler, Stefan (2000). “Das englische Patent”. heureka: Das Wissenschaftsmagazin im Falter, 5, pp. 16-17. Luhmann, Niklas (1992[1998]). “Die Wissenschaft der Gesellschaft”. Frankfurt am Main: Suhrkamp. Maasen, Sabine & Oliver Lieven (2006). “Transdisciplinarity: a new mode of governing science?”. Science and Public Policy, 33, pp. 399-410. Macilwain, Collin (2009). “Genetics: Watching science at work”. Nature, 462 (17. Dec.), pp. 840-842 MacKenzie, Donald & Judy Wajcman (1985). “The Social Shaping of Technology. How the Refigerator Got its Hum”. Milton Keynes: Open University Press. Maier, Barbara (2006). “Autonomy: On Decision-Making in Prenatal Diagnosis”. In: Bernhard Wieser, Sandra Karner & Wilhelm Berger (Eds.). Prenatal Testing: Individual Decision or Distributed Action? München, Wien: Profil. Science and Technology Studies, vol. 48, pp. 181-189. Mallia, Pierre & Henk ten Have (2003). “Can the Four Principles Help in Genetic Screening Decision-Making?”. Health Care Analysis, 11 (2), pp. 131-140. Mappes-Niediek, Norbert (2008). “Österreich für Deutsche. Einblicke in ein fremdes Land”. Berlin: Christoph Links Verlag. Marquis, Don (2007). “An Argument that Abortion is wrong.”. In: Russ ShaferLandau (Ed.). Ethical Theory: an Anthology. Malden/MA et al.: Blackwell Publishing, pp. 439-449. Marshall, Eliot (1996). “The Genome Program's Concience”. Science, 274 (25. October), pp. 488-490. Marteau, Theresa & Martin Richards (Eds.) (1996). “The Troubled Helix. Social and psychological implications of the new human genetics”. Cabridge: Cambridge University Press. Mathieu, Azèle, Martin Meyer & Bruno van Pottelsberghe de la Potterie (2008). “Turning science into business: a case study of a major European research university”. Science and Public Policy, 35, pp. 669-679. Matt, Eduard (2000). “Darstellung qualitativer Forschung”. In: Uwe Flick, Ernst von Kardorff & Ines Steinke (Eds.). Qualitative Forschung. Ein Handbuch. Reinbek: Rowohlt, pp. 578-587. Mayer, Stefanie, Peter Biegelbauer, Erich Grießler, et al. (2010). “The Regulation of Genetic Testing: A Three Country Comparison”. In: Bernhard Wieser & Wilhelm

B IBLIOGRAPHY | 349

Berger (Eds.). Assessing Life: on the Organisation of Genetic Testing. München, Wien: Profil, vol. 59, pp. 67-100. Mayntz, Renate (1986). “Lernprozesse - Probleme der Akzeptanz von TA bei politischen Entscheidungsträgern”. In: Meinolf Dierkes, Thomas Petermann & Volker Thienen (Eds.). Technik und Parlament: Technikfolgen-Abschätzung: Konzepte, Erfahrungen, Chancen. Berlin: Edition Sigma. McCain, Lauren (2002). “Informing technology policy decisions: the US Human Genome Project's ethical, legal, and social implications programs as a critical case”. Technology in Society, 24 (1-2), pp. 111-132. McCain, Lauren (2003). “A policy appraisal of the US human genome project”. Boulder: University of Colorado at Boulder. McCorkel, Jill A. & Kristen Myers (2003). “What Difference Does Difference Make? Position and Privilege in the Field”. Qualitative Sociology, 26 (2), pp. 199-231. McKusick, Victor A. (1989). “The human genome organisation: History, purposes, and membership”. Genomics, 5 (2), pp. 385-387. McNay, Lois (2009). “Self as Enterprise”. Theory, Culture & Society, 26 (6), pp. 5577. Mead, George Herbert (1967[1934]). “Mind, Self, and Society: from the Standpoint of a Social Behaviourist”. Chicago & London: University of Chicago Press. Meili, Christoph, Antje Hellemann-Grobe & Nico Luchsinger (2004). “Evaluierung des GEN-AU Diskurstages”. St. Gallen: Stiftung Risiko-Dialog. Meinefeld, Werner (2000). “Hypothesen und Vorwissen in der qualitativen Sozialforschung”. In: Uwe Flick, Ernst von Kardorff & Ines Steinke (Eds.). Qualitative Forschung. Ein Handbuch. Reinbek: Rowohlt, pp. 265-275. Merton, Robert (1996[1942]). “The Normative Structure of Science”. In: Helga Nowotny & Klaus Taschwer (Eds.). The Sociology of the Sciences. Cheltenham: Edward Elgar Publishing, pp. 38-49. Meuser, Michael & Ulrike Nagel (2005[2002]). “Experteninterviews - vielfach erprobt, wenig beachtet. Ein Beitrag zur qualitativen Methodendiskussion”. In: Alexander Bogner, Beate Littig & Wolfgang Menz (Eds.). Das Experteninterview. Theorie, Methode, Anwendung. Wiesbaden: VS Verlag für Sozialwissenschaften, pp. 71-93. Michael, Mike & Lynda Birke (1994). “Accounting for Animal Experiments: Identity and Disreputable ʻOthersʼ”. Science, Technology & Human Values, 19 (2), pp. 189-204. Miller, Fiona, Mita Giacomini, Catherine Ahern, et al. (2008). “When research seems like clinical care: a qualitative study of the communication of individual cancer genetic research results”. BMC Medical Ethics, 9 (1), pp. 4. Miller, Peter & Nikolas Rose (2008). “Governing the Present: Administering Economic, Social and Personal Life”. Cambridge/UK & Malden/MA: Polity Press.

350 | H OW GENES MATTER

Mirowski, Philip & Esther-Mirjam Sent (2008). “The commercialisation of science and the response of STS”. In: Edward J. Hackett, Olga Amsterdamska, Michael Lynch & Judy Wajcman (Eds.). The Handbook of Science and Technology Studies. Cambridge, MA/London: The MIT Press, pp. 635-689. Mirowski, Philip & Robert Van Horn (2005). “The Contract Research Organization and the Commercialization of Scientific Research”. Social Studies of Science, 35 (4), pp. 503-548. Mishler, Elliot G. (1986). “Research Interviewing. Context and Narrative”. Cambridge/MA & London/UK: Harvard University Press. Mittelstraß, Jürgen (2001). “‘On Transdisciplinarity’, Science and the Future of Mankind”. Vatican City: Pontifical Academy of Sciences: The Holy See. Molewijk, Bert (2004). “Integrated empirical ethics: In search for clarifying identities. A response to 'Integrated empirical ethics: Loss of normativity?'”. Medicine, Health Care and Philosophy, 7 (1), pp. 85-87. Murray, Alexandra & Angus Clarke (2002). “The ethics of population screening”. Current Paediatrics, 12 (6), pp. 447-452. Nationalrat XXII:67 (2004). “Stenographisches Protokoll der 67. Sitzung des Nationalrates der Republik Österreich. XXII. Gesetzgebungsperiode”. Vienna: Austrian Parliament. Nelis, Annemiek, Colin Reddy & Elles Mulder (2008). “ELSA Genomics in the ERASAGE Consortium. Similarities and Differences in Approaches and Themes in the Study of the Relationschip Between Genomics and Society”. Nimegen: Centre for Society and Genomics. Nelkin, Dorothy (Ed.) (1992). “Controversies: Politics of technical decisions”. Newbury Park: Sage. Nelkin, Dorothy (1995). “Science controversies. The dynamics of public disputes in the United States”. In: Sheila Jasanoff, Gerald E. Markle, James C. Petersen & Trevor J. Pinch (Eds.). Handbook of Science and Technology Studies. London: Sage, pp. 444-456. Nentwich, Michael, Alexander Bogner, Walter Peissl, et al. (2006). “TECHPOL 2.0: Awareness – Partizipation – Legitimität. Vorschläge zur partizipativen Gestaltung der österreichischen Technologiepolitik”. Vienna: Institut für Technikfolgenabschätzung der Österreichischen Akademie der Wissenschaften. Nicolaides, Kypros H., G. Azar, D. Byrne, et al. (1992). “Fetal nuchal translucency: ultrasound screening for chromosomal defects in first trimester of pregnancy”. British Medical Journal, 304 (6831), pp. 867-869. Nieden, Andrea zur (2008). “Zum Subjekt der Gene werden. Subjektivierungsweisen im Zeichen der Genetisierung von Burstkrebs: Eine qualitative Untersucheung”. Freiburg: Albert-Ludwigs-Universität. Novas, Carlos & Nikolas Rose (2000). “Genetic Risk and the Birth of the Somatic Individual”. Economy and Society, 29, pp. 485-513.

B IBLIOGRAPHY | 351

Nowotny, Helga (1979). “Kernenergie: Gefahr oder Notwendigkeit: Anatomie eines Konflikts”. Frankfurt am Main: Suhrkamp. Nowotny, Helga (1998). “Vorwort”. In: Bettina Heintz & Bernhard Nievergelt (Eds.). Wissenschafts- und Technikforschung in der Schweiz: Sondierungen einer neuen Disziplin. Zürich: Seismo, pp. 7-12. Nowotny, Helga (1999). “The Need for Socially Robust Knowledge”. TA-Datenbank-Nachrichten, 8 (3/4), pp. 12-16. Nowotny, Helga, Peter Scott & Michael Gibbons (2001). “Re-Thinking Science”. Cambridge/UK: Polity Press. NSGC (1993). “National Society of Genetic Counsellors Code of Ethics”. In: Diane M. Bartels, Bonnie S. LeRoy & Arthur L. Caplan (Eds.). Prescribing our Future. Ethical Challenges in Genetic Counceling. New York: De Gruyter, pp. 169-171. Nuffield Council on Bioethics (1993). “Genetic Screening. Ethical Issues”. London: Nuffield Council on Bioethics. OECD (2001). “OECD Science, Technology and Industry Scoreboard. Towards a Knowledge-Based Economy”. Paris: OECD Publishing. OECD (2010). “OECD Science, Technology and Industry Outlook 2010”. OECD Publishing. OECD (2011). “OECD Science, Technology and Industry Scoreboard 2011”. Paris: OECD Publishing. Orlandi, F., G. Damiani, T. W. Hallaban, et al. (1997). “First-trimester screening for fetal aneuploidy: biochemistry and nuchal translucency”. Ultrasound in Obstetrics and Gynecology, 10 (6), pp. 381-386. Ortega, Francisco (1997). “Michel Foucault. Rekonstruktion der Freundschaft”. München: Wilhelm Fink Verlag. Osborne, Thomas (1993). “Liberalism, neo-liberalism and the liberal profession of medicine”. Economy and Society, 22 (3), pp. 345-356. Paine, Robert (1992). “`Chernobyl' reaches Norway: the accident, science, and the threat to cultural knowledge”. Public Understanding of Science, 1 (3), pp. 261280. Pandor, Abdullah , Joe Eastham, Catherine Beverley, et al. (2004). “Clinical effectiveness and cost-effectiveness of neonatal screening for inborn errors of metabolism using tandem mass spectrometry: a systematic review”. Health Technology Assessment, 8 (12), pp. 1-312. Parsons, E P, A J Clarke, K Hood, et al. (2002). “Newborn screening for Duchenne muscular dystrophy: a psychosocial study”. Arch Dis Child Fetal Neonatal, 86 (2), pp. F91–F95. Parsons, Evelyn P. & Don M. Bradley (1994). “Ethical issues in newborn screening for Duchenne muscular dystrophy. The question of informed consent”. In: Angus Clarke (Ed.). Genetic Counselling. Practice and Principles. London & New York: Routledge, pp. 95-112.

352 | H OW GENES MATTER

Parsons, Evelyn P., Janet T. King & Don M. Bradley (2007). “Mother's account of screening newborn babies in Wales (UK)”. British Journal of Midwifery, 14 (2), pp. 59-65. Paul, Diane B. (1994). “Eugenic Ancieties, Social Realities, and Political Choices”. In: Carl F. Cranor (Ed.). Are Genes Us? The Social Consequences of the New Genetics. New Brunswick/NJ: Rutgers University Press, pp. 142-154. Pauwels, Eléonore (2007). “Ethics for Researchers. Facilitating Research Excellence in FP7”. Luxembourg: Office for Official Publications of the European Communities. Petchesky, Rosalind Pollack (1981). “Antiabortion, Antifeminism, and the Rise of the New Right”. Feminist Sudies, 7 (2), pp. 206-246. Petersen, Alan (1998). “The new genetics and the politics of public health”. Critical Public Health, 8 (1), pp. 59-71. Petersen, Alan & Lupton Deborah (1996). “The New Public Health. Health and Self in the Age of Risk”. London et al.: Sage. Pezalla, Anne E, Jonathan Pettigrew & Michelle Miller-Day (2012). “Researching the researcher-as-instrument: an exercise in interviewer self-reflexivity”. Qualitative Research, 12 (2), pp. 165-185. Philips, Nelson & Hardy Cynthia (2002). “Discourse analysis: Investigating processes of social construction”. Thousand Oaks/CA: Sage. Pinch, Trevor J. & Wiebe E. Bijker (1984). “The Social Construction of Facts and Artefacts: or How the Sociology of Science and the Sociology of Technology might Benefit Each Other”. Social Studies of Science, 14 (3), pp. 399-441. Plass, Ann-Marie (2010). “Extentions of the Newborn Screening Programme in the Netherlands: Opinions of Prospective Parents, and Unintended Side Effects”. In: Bernhard Wieser & Wilhelm Berger (Eds.). Assessing Life: on the Organisation of Genetic Testing. München, Wien: Profil. Science and Technology Studies, pp. 155-174. Pollitt, R. (2006). “International perspectives on newborn screening”. Journal of Inherited Metabolic Disease, 29 (2), pp. 390-396. Pollitt, Rodney J. (2007). “Introducing new screenings: Why are we all doing different things?”. Journal of Inherited Metabolic Disease, 30 (4), pp. 423-429. Pollitt, Rodney J., A Green, C. J. McCabe, et al. (1997). “Neonatal screening for inborn errors of metabolism: cost, yield and outcome”. Health Technology Assessment, 1 (7). Prainsack, Barbara, Mette N. Svendsen, Lene Koch, et al. (2010). “How do we collaborate? Social science researchers’ experience of multidisciplinarity in biomedical settings”. BioSocieties, 5 (2), pp. 278-286. Pregernig, Michael (2006). “Transdisciplinarity viewed from afar: science-policy assessments as forums for the creation of transdisciplinary knowledge”. Science and Public Policy, 33 (6), pp. 445-455.

B IBLIOGRAPHY | 353

Proctor, Robert N. (1988). “Racial Hygene. Medicine under the Nazis”. Cambridge/MA & London: Harvard University Press. Rabinow, Paul & Gaymon Bennett (2007) “The Work of Equipment: 3 Modes”. ARC Working Paper 10. Radder, Hans (Ed.) (2010). “The commodification of academic research”. Pittsburgh: University of Pittsburgh Press. Rammert, Werner (1992). “Wer oder was steuert den technischen Fortschritt? Technischer Wandel zwischen Steuerung und Evolution”. Soziale Welt, 43 (1), pp. 7-25. Rammert, Werner (2002). “Technik als verteilte Aktion: Wie technisches Wirken als Agentur in hybriden Aktionszusammenhängen gedeutet werden kann Technical University Technology Studies”. Berlin: Technische Universität Berlin. Rammert, Werner (2003). “Technik in Aktion: Verteiltes Handeln in soziotechnischen Konstellationen”. In: Thomas Christaller & Josef Wehner (Eds.). Autonome Maschinen. Wiesbaden: Westdeutscher Verlag, pp. 289-315. Rheinberger, Hans-Jörg (1997). “Von der Zelle zum Gen. Repräsentationen der Molekularbiologie”. In: Hans-Jörg Rheinberger, Michael Hagner & Bettina Wahring-Schmidt (Eds.). Räume des Wissens: Repräsentation, Codierung, Spur. Berlin: Akademie Verlag, pp. 265-279. Rhodes, Rod A.W. (1997). “Understanding Governance: Policy Networks, Governance, Reflexivity and Accountability”. Buckingham & Philadelphia: Open University Press. Rip, Arie (2009). “Futures of ELSA”. EMBO Rep, 10 (7), pp. 666-670. Rip, Arie, Thomas J. Misa & Johan Schot (Eds.) (1995). “Managing Technology in Society: The Approach of Constructive Technology Assessment”. London & New York: Pinter. Roberts, Celia (2006). “Enacting Gender in Reproductive Medicine”. In: Bernhard Wieser, Sandra Karner & Wilhelm Berger (Eds.). Prenatal Testing. Individual Decision or Distributed Action? München & Wien: Profil, vol. 48, pp. 87-100. Ropohl, Günter (1991). “Technologische Aufklärung. Beiträge zur Technikphilosophie”. Frankfurt am Main: Suhrkamp. Rose, Nikolas (1999). “Powers of Freedom: Reframing Political Thought”. Cambridge: Cambridge University Press. Rose, Nikolas (2007). “The Politics of Life Itself: Biomedicine, Power and Subjectivity in the Twenty-first Century”. Princeton: Princeton University Press. Rose, Nikolas & Peter Miller (2008[1992]). “ Political power beyond the state: problematics of government”. In: Peter Miller & Nikolas Rose (Eds.). Governing the Present: Administering Economic, Social and Personal Life. Cambridge/UK & Malden/MA: Polity Press, pp. 53-83. Rose, Nikolas & Carlos Novas (2005). “Biological Citizenship”. In: Aihwa Ong & Stephen Collier (Eds.). Global Assemblages. Techology, Politics, and Ethics as

354 | H OW GENES MATTER

Anthropological Problems. Malden/MA, Oxford & Charlton: Blackwell, pp. 439463. Rosen, Paul (2002). “Framing Production. Technology, Culture, and Change in the British Bicycle Industry”. Cambridge, London: MIT Press. Rosenkranz, Werner & Hannelore Zierler (1982). “Ergebnisse und Erfahrungen bei der präpartalen Diagnose”. Wiener klinische Wochenschrift, 94, pp. 213-217. Rubin, Herbert J. & Irene S. Rubin (2005). “Qualitative Interviewing: the art of hearing data”. Thousand Oaks/CA et al.: Sage Publications. Samerski, Silja (1999). “Schwanger gehen mit dem ‘Risiko’? Professionelle Verratlosung in der genetischen Beratung”. Psychomed 11 (2), pp. 72-76. Samerski, Silja (2003). “Entmündigende Selbstbestimmung. Wie die genetische Beratung schwangere Frauen zu einer unmöglichen Entscheidung befähigt”. In: Sigrid Graumann & Indgrid Schneider (Eds.). Verkörperte Technik-Entkörperte Frau. Biopolitik und Geschlecht. Frankfurt am Main & New York: Campus, pp. 213-229. Samerski, Silja & Barbara Duden (1998). “Das aufgeschwatzte Risiko - genetische Beratung als Sprach-Ritual”. In: Ulrike Hauffe & Elmar Brähler (Eds.). Moderne Schwangerschaften - zwischen Machbarkeitswahn und Auslese. Gießen: Psychosozial Verlag, pp. 79-88. Schäffer, Wolf (Ed.) (1983). “Finalization in Science. The Social Orientation of Scientific Progress”. Dordrecht: Reidel. Schicktanz, Silke & Jörg Naumann (2003). “Bürgerkonferenz: Streitfall Gendiagnostik. ein Modellprojekt der Bürgerbeteiligung am bioethischen Diskurs”. Opladen: Leske + Budrich. Schmid, Wilhelm (1994[1987]). “Die Geburt der Philosophie im Garten der Lüste. Michel Foucaults Archäologie des platonischen Eros”. Frankfurt am Main: Fischer Taschenbuch Verlag. Schmid, Wilhelm (2000[1991]). “Auf der Suche nach einer neuen Lebenskunst. Die Frage nach dem Grund und die Neubegründung der Ethik bei Foucault”. Frankfurt am Main: Suhrkamp Taschenbuch Wissenschaft. Schmid, Wilhelm (2000[1998]). “Philosophie der Lebenskunst. Eine Grundlegung1998”. Frankfurt am Main: Suhrkamp Taschenbuch Wissenschaft. Schmidt, Christiane (2000). “Analyse von Leitfadeninterviews”. In: Uwe Flick, Ernst von Kardorff & Ines Steinke (Eds.). Qualitative Forschung. Ein Handbuch. Reinbek: Rowohlt, pp. 447-456. Schmidt, E. (1978). “Demographie – Biostatistik”. In: K. D. Bachmann, H. Ewerbeck, G. Joppichet al (Eds.). Pädiatrie in Praxis und Klinik. Stuttgart & New York: Gustav Fischer Verlag, pp. 2.1-2.7. Schnell, Rainer, Paul B. Hill & Elke Esser (2005). “Methoden der empirischen Sozialforschung”. München: Oldenbourg. Schulz-Schaeffer, Ingo (2000). “Sozialtheorie der Technik”. Frankfurt am Main: Campus.

B IBLIOGRAPHY | 355

Schulz-Schaeffer, Ingo (2006). “Who Is the Actor and Whose Goals Will Be Pursued? Rethinking Some Concepts of Actor Network Theory”. In: Wilhelm Berger, Sandra Karner & Bernhard Wieser (Eds.). Prenatal Testing: Individual Decision or Distributed Action. München, Wien: Profil. Science and Technology Studies, vol. 48, pp. 131-158. Schulz-Schaeffer, Ingo (2009). “Die Frage nach der Handlungsträgerschaft von Technik und das Konzept gradualisierten Handelns”. In: Wilhelm Berger & Günter Getzinger (Eds.). Das Tätigsein der Dinge. Beiträge zur Handlungsträgerschaft von Technik. München, Wien: Profil. Science and Technology Studies, vol. 58, pp. 37-59. Schwarz-Cowan, Ruth (1994). “Women's Role in the History of Amniocentesis and Chronic Villi Sampling”. In: Karen H. Rothenberg & Elisabeth J. Thomson (Eds.). Women and Prenatal Testing. Facing the Challenges of Genetic Technology. Columbus: Ohio State University Press, pp. 35-48. Scully, Jackie Leach, Rouven Porz & Christoph Rehmann-Sutter (2007). “ʻYou don't make genetic test decisions from one day to the nextʼ - using time to preserve moral space”. Bioethics, 21 (4), pp. 208-217. Seifert, Franz (2002). “Gentechnik - Öffentlichkeit - Demokratie. Der österreichische Gentechnik-Konflikt im intetrnationalen Kontext”. München, Wien: Profil. Seifert, Franz (2006). “Local steps in an international career: a Danish-style consensus conference in Austria”. Public Understanding of Science, 15 (1), pp. 73-88. Seymour, Carol A. , MJ Thomason, RA Chalmers, et al. (1997). “Newborn screening for inborn errors of metabolism: a systematic review”. Health Technology Assessment, 1 (11), pp. 1-97. Shapin, Steven & Simon Shaffer (1985). “Leviathan and the air-pump: Hobbes, Boyle, and the experimental life”. Princeton: Princeton University Press. Silverman, David (2010). “Doing Qualitative Research”. London et al.: Sage. Sloterdijk, Peter (1999). “Regeln für den Menschenpark: Ein Antwortschreiben zu Heideggers Brief über den Humanismus”. Frankfurt am Main: Edition Suhrkamp. Snijders, Rosalinde J. M., Katrin Sundberg, Wolfgang Holzgreve, et al. (1999). “Maternal age- and gestation-specific risk for trisomy 21”. Ultrasound in Obstetrics and Gynecology, 13 (3), pp. 167-170. Soini, Sirpa, Segolene Ayme & Gert Matthijs (2008). “Patenting and licensing in genetic testing: ethical, legal and social issues”. Eur J Hum Genet, 16 (S1), pp. S10-S50. Soloway, Richard A. (1990). “Demography and Degeneration. Eugenics and the Declining Birthrate in Twentieth-Century Britain.”. Chapel Hill & London: University of North Carolina Press. Standard, Der. (2007). “Down-Syndrom Tag”. Der Standard. Retrieved 4.4.2007, from http://derstandard.at/2804467.

356 | H OW GENES MATTER

Stanley, Christine A. & Patrick Slattery (2003). “Who Reveals what to whom? Critical Reflections on Conducting Qualitative Inquiry as an Interdisciplinary, Biracial, Male/Female Research Team”. Qualitative Inquiry, 9 (5), pp. 705-728. Statistik Austria (2000). “Gesundheitsstatistisches Jahrbuch 1995/96 (1998) – 1998 (2000)”. Wien: Verlag Österreich. Stehr, Nico (1994). “Arbeit, Eigentum und Wissen”. Frankfurt am Main: Suhrkamp. Steinke, Ines (2000). “Gütekriterien qualitativer Forschung”. In: Uwe Flick, Ernst von Kardorff & Ines Steinke (Eds.). Qualitative Forschung. Ein Handbuch. Reinbek bei Hamburg: Rowohlt, pp. 319-331. Stemerding, Dirk & Annemiek Nelis (2006). “Cancer genetics and its different faces of autonomy'”. New Genetics & Society, 25 (1), pp. 1-19. Stengel-Rutkowski (1997). “Möglichkeiten und Grenzen pränataler Diagnostik”. In: Franz Petermann, Silvia Wiedebusch & Michael Quante (Eds.). Perspektiven der Humangenetik. Medizinische, psychologische und ethische Aspekte. Paderborn, München, Wien, Zürich: Ferdinand Schöningh, pp. 49-80. Stirling, Andy (2008). “ʻOpening Upʼ and ʻClosing Downʼ”. Science, Technology & Human Values, 33 (2), pp. 262-294. Stöckler-Ipsiroglu, Sylvia, Olaf A. Bodamer, Dorothea Möslinger, et al. (2000). “Neugeborenen-Screening in Österreich: Erweiterung des Untersuchungsprogrammes nach Einführung der Tandemmassenspektrometire”. report, Wien: Universitäts-Klinik für Kinder- und Jugendheilkunde, AKH Wien. Strauss, Anselm & Juliet Corbin (1996). “Grounded Theory: Grundlagen qualitativer Sozialforschung”. Weinheim: Psychologie Verlags Union. Streetly, A & V Corbett (1998). “National newborn screening programme an audit of phenylketonuria and congenital hypothyroidism screening in England and Wales”. London: United Medical and Dental Schools Department of Public HealthMedicine. Sturgis, Patrick & Nick Allum (2004). “Science in Society: Re-Evaluating the Deficit Model of Public Attitudes”. Public Understanding of Science, 13 (1), pp. 55-74. Tanggaard, Lene (2007). “The Research Interview as Discourses Crossing Swords”. Qualitative Inquiry, 13 (1), pp. 160-176. ten Have, Henk (2001). “Genetics and culture: The geneticization thesis”. Medicine, Health Care and Philosophy, 4 (3), pp. 295-304. Thompson, Charis (2005). “Making Parents: The Ontological Choreography of Reproductive Technologies”. Cambridge/MA & London: MIT Press. Tooley, Michael (2007). “Abortion and Infanticide”. In: Russ Shafer-Landau (Ed.). Ethical Theory: an Anthology. Malden/MA et al.: Blackwell Publishing, pp. 429438. Torgersen, Helge (1999). “The Ozone Consensus Conference in Austria. Case Study for EUROpTA”. Copenhagen: Teknologirådet.

B IBLIOGRAPHY | 357

Truffer, Bernhard (2007). “Wissensintegration in transdisziplinären Projekten. Flexibles Rollenverständnis als Schlüsselkompetenz für das Schnittstellenmanagement.”. GAIA, 16 (1), pp. 41-45. Vailly, Joëlle & Cécile Ensellem (2010). “Informing Populations, Governing Subjects: The Practices of Screening for a Genetic Disease in France”. In: Bernhard Wieser & Wilhelm Berger (Eds.). Assessing Life: on the organisation of genetic testing. München, Wien: Profil. Science and Technology Studies, pp. 225-253. van Bramer, Scott E. (1998). “An Introductin to Mass Spectrometry”. Cester/PA: Widener University. Venter, Craig J. (2007). “A Life Decoded. My Genome: My Life”. New York: Penguin. Wainwright, Steven P., Clare Williams, Mike Michael, et al. (2006a). “Ethical boundary-work in the embryonic stem cell laboratory”. Sociology of Health & Illness, 28 (6), pp. 732-748. Wainwright, Steven P., Clare Williams, Mike Michael, et al. (2006b). “From bench to bedside? Biomedical scientists' expectations of stem cell science as a future therapy for diabetes”. Social Science & Medicine, 63 (8), pp. 2052-2064. Waldschmidt, Anne (1996). “Das Subjekt in der Humangenetik. Expertendiskurse zu Programmatik und Konzeption der genetischen Beratung 1945-1990”. Münster: Westfälisches Dampfboot. Watson, James D. (2000). “Die Ethik des Genoms. Warum wir Gott nicht mehr die Zukunft des Menschen überlassen dürfen”. Frankfurter Allgemeine Zeitung, 224 (26.09.2000), pp. 55. Watson, Michael S., Michele A. Lloyd-Puryear, Marie Y. Mann, et al. (2006). “Main Report”. Genetics in Medicine, 8 (5), pp. 12S-252. Watson, Michael S., Marie Y. Mann, Michele A. Lloyd-Puryear, et al. (2006). “Executive Summary”. Genetics in Medicine, 8 (5), pp. 1S-11. Weber, Max (1980[1921]). “Wirtschaft und Gesellschaft. Grundrisse der verstehenden Soziologie”. Tübingen: Mohr Weingart, P. (1999a). “Scientific expertise and political accountability: paradoxes of science in politics”. Science and Public Policy, 26 (3), pp. 151-161. Weingart, Peter (1997). “From ʻFinalizationʼ to ʻMode 2ʼ: old wine in new bottles?”. Social Science Information, 36 (4), pp. 591-613. Weingart, Peter (1999b). “Neue Formen der Wissensproduktion: Fakt, Fiktion und Mode”. TA-Datenbank-Nachrichten, 8 (3/4), pp. 48-57. Weingart, Peter (2001). “Die Stunde der Wahrheit. Zum Verhältnis der Wissenschaft zu Politik, Wirtschaft und Medien in der Wissensgesellschaft”. Weilerswist: Velbrück Wissenschaft. Weir, Lorna (1996). “Recent developments in the government of pregnancy”. Economy and Society, 25 (3), pp. 373-392.

358 | H OW GENES MATTER

Weiss, Martin G. (2009). “Bios und Zoe”. Frankfurt am Main: Suhrkamp Taschenbuch Verlag. Wellcome Trust (1998). “Biomedical advance and public policy: Bridging the research gap”. Broadway: Wellcome Trust. Weltärztebund. (2000). “Deklaration des Weltärztebundes von Helsinki. Ethische Grundsätze für dei medizinische Forschung am Menschen”. Retrieved 16.2. 2010, from http://www.ek.med.tu-muenchen.de/media/pdf/helsinki.pdf. Werle, Raymund (2002). “Technik als Akteurfiktion”. In: Werner Rammert & Ingo Schulz-Schaeffer (Eds.). Können Maschinen handeln? Soziologische Beiträge zum Verhältnis von Mensch und Technik. Frankfurt am Main: Campus, pp. 119139. Werle, Raymund (2007). “Pfadabhängigkeit”. In: Arthur Benz, Susanne Lütz, Uwe Schimank & Georg Simonis (Eds.). Handbuch Governance. Wiesbaden: VS Verlag für Sozialwissenschaften, pp. 119-131. Wertz, Dorothy C. & John C. Fletcher (1989). “Ethics and Human Genetics. A CrossCultural Perspective”. Berlin et al.: Springer. Wertz, Dorothy C. & John C. Fletcher (2004). “Genetics and Ethics in Global Perspective”. Dordrecht/Netherland: Kluwer Academic Publishers. Wexler, Nancy S. (2003). “James D. Watson and the ELSI Years”. In: John Inglis, Joseph Sambrook & Jan Witkowski (Eds.). Inspiring Science: Jim Watson and the Age of DNA. Cold Spring Harbor, NY: Cold Spring Harbor Laboratory Press, pp. 403-412. Weyer, Johannes (2009). “Die Kooperation menschlicher Akteure und nichtmenschlicher Agenten. Ansatzpunkte einer Soziologie hybrider Systeme”. In: Wilhelm Berger & Günter Getzinger (Eds.). Das Tätigsein der Dinge. Beiträge zur Handlungsträgerschaft von Technik. München, Wien: Profil. Science and Technology Studies, vol. 58, pp. 61-92. Wieser, Bernhard (2005). “Das Erbe der Väter: Über historische Aspekte der Humangenetik”. Pränataldiagnostik: Historische Aspekte - aktuelle Frorschung Beratungsdimensionen - ethische Fragen. Wilhelm Berger. Klagenfurt: IFF/ TEWI, vol. 108, pp. 6-48. Wieser, Bernhard (2006). “Inescapable Decisions. Implications of New Developments in Prenatal Testing”. Science, Technology & Innovation Studies, 2, pp. 41-56. Wieser, Bernhard (2009). “Akteurskonstellationen des Neugeborenenscreeenings”. In: Wilhelm Berger & Günter Getzinger (Eds.). Das Tätigsein der Dinge. Beiträge zur Handlungsträgerschaft von Technik. München, Wien: Profil. Science and Technology Studies, vol. 58, pp. 209-251. Wieser, Bernhard (2010a). “Ethische, rechtliche und soziale Implikationen der Genomforschung: Über die Entsteheung eines Tandem-Modells im Kontext des Human Genom Projekts”. Genomforschung als Gegenstand geistes- und sozial-

B IBLIOGRAPHY | 359

wissenschaftlicher Reflexion: Über die Entstehungshintergründe des ELSI Programms im Human Genom Projekt. Wilhelm Berger. Klagenfurt: IFF/TEWI, vol. 129, pp. 11-70. Wieser, Bernhard (2010b). “Genetisches Testen: ELSA im Kontext medizinischer Anwendungen”. Österreichische Zeitschrift für Soziologie (special issue), pp. 139-167. Wieser, Bernhard (2010c). “Grenzen der Wissenschaft und deren Überschreitung”. In: Werner Lenz (Ed.). Interdisziplinarität - Wissenschaft im Wandel. Wien: Erhard Löcker, pp. 129-145. Wieser, Bernhard (2010d). “Public accountability of newborn screening: Collective knowing and deciding”. Social Science & Medicine, 70 (6), pp. 926-933. Wieser, Bernhard (2011a). “Die Verhandlung von ELSA-Forschung”. ELSA Forschung: Über Möglichkeiten und Grenzen reflexiver Forschungsbeziehungen im Kontext der modernen Biowissenschaften. Wilhelm Berger. Klagenfurt: IFF/ TEWI, vol. 131, pp. 9-120. Wieser, Bernhard (2011b). “Empirische Spuren konzeptueller Ansätze in der ELSAForschung”. ELSA Forschung: Über Möglichkeiten und Grenzen reflexiver Forschungsbeziehungen im Kontext der modernen Biowissenschaften. Wilhelm Berger. Klagenfurt: IFF/TEWI, vol. 132. Wieser, Bernhard (2011c). “Gene im Bauch: Über die Genetisierung von Schwangerschaft”. In: Arno Bammé (Ed.). Live Sciences. Die Neukonstruktion des Menschen? München & Wien: Profil, pp. 107-127. Wieser, Bernhard (2011d). “Methodische Herausforderungen der ELSA-Forschung”. ELSA-Forschung: Theoretische Bezüge und disziplinäre Verortungen. Wilhelm Berger. Klagenfurt: IFF/TEWI, vol. 131. Wieser, Bernhard (2011e). “Vier Zugänge der ELSA-Forschung”. ELSA-Forschung: Zur Rolle geistes- und sozialwissenschaftlicher Reflexion über emergierende Technologien am Beispiel der Biowissenschaften. Wilhelm Berger. Klagenfurt: IFF/TEWI, vol. 130, pp. 11-75. Wieser, Bernhard, Daniela Freitag & Sandra Karner (2008). “Diffusion und Organisation genetischen Testens. Medizinische ExpterInnen im Interview”. Klagenfurt: IFF/TEWI, vol. 120, pp. 202. Wieser, Bernhard & Sandra Karner (2006). “Individualising Decisions: On the Paradoxes of Prenatal Testing”. In: Bernhard Wieser, Sandra Karner & Wilhelm Berger (Eds.). Prenatal Testing: Individual Decision or Distributed Action? München, Wien: Profil. Science and Technology Studies, vol. 48, pp. 27-52. Wieser, Bernhard, Sandra Karner & Wilhelm Berger (2006a). “Introduction”. In: Bernhard Wieser, Sandra Karner & Wilhelm Berger (Eds.). Prenatal Testing: Individual Decision or Distributed Action? München, Wien: Profil. Science and Technology Studies, vol. 48, pp. 7-12. Wieser, Bernhard, Sandra Karner, Wilma Mert, et al. (2006b). “Pränataldiagnostik aus der Sicht von untersuchten Frauen.”. Klagenfurt: IFF/TEWI, vol. 112.

360 | H OW GENES MATTER

Wieser, Bernhard, Sandra Karner & Martina Ukowitz (2006c). “Pränataldiagnostik aus der Sicht von medizinischen ExpertInnen”. Klagenfurt: IFF/TEWI, vol. 111. Wilding, Peter (2000). “Verheißungen der Technik. Der Modernisierungsprozess im Blick der technischen Eliten und ihrer Kritiker um die Jahrhundertwende (1900)”. In: Katharina Scherke & Sabine A. Haring (Eds.). Analyse und Kritik der Modernisierung um 1900 und um 2000. Wien: Passagen Verlag, pp. 85-107. Wilsdon, James & Rebecca Willis (2004). “See-through Science: Why Public Engagement Needs to Move Upstream”. London: Demos. Wilson, James M. G. & Gunner Jungner (1968). “Principles and Practice of Screening for Disease”. Geneva: World Health Organization. Winner, Langdon (1980). “Do Artifacts Have Politics?”. Daedalus, 109 (1), pp. 121136. Woolgar, Steve & Geoff Cooper (1999). “Do Artefacts have Ambivalince? Moses' Bridges, Winner's Bridges and other Urban Legends in S&TS”. Social Studies of Science, 29 (3), pp. 433-449. Wüstner, Kerstin (2003). “Ethics and practice: Two worlds? The example of genetic counselling”. New Genetics and Society, 22 (1), pp. 61-87. Wynne, Brian (1991). “Knowledges in Context”. Science, Technology & Human Values, 16 (1), pp. 111-121. Wynne, Brian (1993). “Public uptake of science: a case for institutional reflexivity”. Public Understanding of Science, 2 (4), pp. 321-337. Wynne, Brian (1996a). “May the Sheep Safely Graze? A reflexive view of the expertlay knowledge divide”. In: Scott Lash, Bron Szerszynski & Brian Wynne (Eds.). Risk, Environment and Modernity. London: Sage, pp. 44-83. Wynne, Brian (1996b). “Misunderstood misunderstanding: social identities and public uptake of science”. In: Alan Irwin & Brian Wynne (Eds.). Misunderstanding Science? The Public Reconstruction of Science and Technology. Cambridge: Cambridge University Press, pp. 19-46. Wynne, Brian (2002). “Risk and Environment as Legitimatory Discourses of Technology: Reflexivity Inside Out?”. Current Sociology, 50 (3), pp. 459-477. Wynne, Brian (2006). “Public Engagement as a Means of Restoring Public Trust in Science – Hitting the Notes, but Missing the Music?”. Public Health Genomics, 9 (3), pp. 211-220. Yesley, Michael S. (2008). “What's ELSI got to do with it? Bioethics and the Human Genome Project”. New Genetics and Society, 27 (1), pp. 1-6. Ziman, John (1991). “Public Understanding of Science”. Science, Technology & Human Values, 16 (1), pp. 99-105. Ziman, John (1995). “Postacademic Science: Constructing Knowledge with Networks and Norms”. Royal Society Medawar Lecture. London. Zwart, Hub & Annemiek Nelis (2009). “What is ELSA genomics?”. EMBO Reports, 10 (6), pp. 540-544.

Acknowledgement

I would like to thank all those who have supported me over the years. Each of them has contributed in unique ways to my academic development. My teachers and mentors have shown me a way to discover the pursuit of knowledge. My colleagues have challenged my thoughts and also cheered me up when I was desperate. Many times, I had the opportunity to travel to other countries and could experience their scholarly cultures. I am very grateful to those who hosted me in Lancaster, Cardiff, Nijmegen and Copenhagen. Furthermore, I wish to thank my funding institutions for providing me with the resources to carry out the research that led to this study. Special thanks I owe to those who shared their experiences with me when I interviewed them. Last but not least, I am especially grateful for the love and friendship I enjoy; without it, I would not have come this far. The research providing the empirical grounding for this book was obtained in a series of projects: 1) “Prenatal Testing: Individual Decision or Distributed Action?”, 2) “Genetic Testing: Diffusion–Frameworks of Application–Identity and Ethical Reflection”, and 3) “Doing ELSA: an Empirical Study of ELSA Research in Practice”. All three research projects were funded by the Austrian Genome Research Programme GEN-AU and part of the so-called “‘Accompanying Research Programme ELSA’ within the ‘Austrian Genome Research Programme GEN-AU’”. The research team of the project on prenatal testing consisted of Sandra Karner, Martina Ukowitz, Michaela Jahrbacher, Wilma Mert, Wilhelm Berger and Bernhard Wieser. The team working on the newborn screening project as well as on the project called “Doing ELSA” consisted of Sandra Karner, Daniela Freitag, Wilhelm Berger and Bernhard Wieser. It was a pleasure being part of these research teams and I am grateful for having had the opportunity for building on the collective achievements of these research teams. Published with support of the Forschungsrat of Universitaet Klagenfurt.

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