Atomized Body: The Cultural Life of Stem Cells, Genes & Neurons - Hardcover

Hardcover

ISBN 10: 9187121921 ISBN 13: 9789187121920

Publisher: Nordic Academic Press, 2012

Synopsis

Just like the first theories in physics viewed atoms as independent and surrounded by a void, our bodies' microscopic constituents are often portrayed as disconnected from the body as a unified organism, and from its cultural and social contexts. In this book the authors examine the relations between culture, society and bioscientific research and show how our bodies' singularised particles indeed still are socially and culturally embedded. In today's medicine, the biosciences are entangled with state power, commercialism, and cultural ideas and expectations, as well as with the hopes and fears of individuals. Therefore, biomedicine and biotechnology also reshape our perceptions of selfhood and life. From multidisciplinary perspectives, including visual studies, theology, and ethnology, this volume discusses the biosciences and the atomised body in their social, cultural and philosophical contexts.

About this title

About the Author

Max Liljefors is an associate professor of art history and visual studies at Lund University in Sweden.

Susanne Lundin is a professor in ethnology at Lund University and a member of the Royal Swedish Academy of Sciences. She is the editor of Amalgamations and Gene Technology and Economy.

Andréa Wiszmeg is a PhD in ethnology at Lund University. She examines societal and cultural implications of neurological and genetic research for patients and the public.

Excerpt. © Reprinted by permission. All rights reserved.

The Atomized Body

The Cultural Life of Stem Cells, Genes and Neurons

By Max Liljefors, Susanne Lundin, Andréa Wiszmeg, Alain Le Nouail

Nordic Academic Press

Copyright © 2012 Nordic Academic Press and the authors
All rights reserved.

ISBN: 978-91-87121-92-0

Contents

Acknowledgments, 
Introduction, 
1. Moral accounting. Ethics and praxis in biomedical research Susanne Lundin, 
2. A molecular body in a digital society. From practical biosociality to online biosociality Niclas Hagen, 
3. Medical need, ethical scepticism. Clashing views on the use of fœtuses in Parkinson's disease research Andréa Wiszmeg, 
4. Ambivalent embodiment. Affective values and rationality René Rosfort, 
5. Interlacing the brain, contextualizing the body. Relational understandings in social neuroscience Stefan Beck, 
6. Neuronal fantasies. Reading neuroscience with Schreber Max Liljefors, 
7. The scan-portrait. Geographies and geometries of perception Silvia Casini, 
8. Credibility and legitimacy. Challenges to interdisciplinary research Elin Bommenel, 
Colour Plate, 
About the Authors, 

CHAPTER 1

Moral accounting

Ethics and praxis in biomedical research

Susanne Lundin

What circulates between scientists and non-specialists or even between the scientists of one discipline and other disciplines are at best the results, never the cooking. You are never allowed to enter the kitchen of science. (Bourdieu 1984/1992)

Today's biomedicine — and not least human genome research — has the knowledge and the tools to map the origins of mankind, enter the human present, and change our future. These circumstances have led to hopes, but also fears, in Swedish society just as much as internationally. This process is, as sociologist Ulrich Beck discusses, due to development and modernization themselves having become reflexive (Beck 1986). This means that the use of technology is, of necessity, dogged by discussions of its consequences. After more than two decades of ethical discussions, the Swedish population has more and more accepted science. Despite this increasing acceptance, the utopias of genome research continue to go hand in hand with terrifying scenarios and dystopias (Koch & Høyer 2007).

These utopias and dystopias are often portrayed according to genre. For example, gene technology is often perceived as something positive when the purpose is to find a cure for human diseases or rare hereditary ailments, but is usually seen as hazardous when the technology is applied to Nature (see Ideland 2004). There are also clear labels for the users of the technology and its receivers. The Researcher and the Public form one such pairing of opposites, where the former is often described in terms of heroism or villainy, and the latter is without knowledge and power. The fact that generalizations and contradictions appear is naturally not surprising, but should be understood as cultural coping with medical developments. This cultural analytical insight is one thing; it is a completely different matter to consider the societal consequences of the categorizations. Such dichotomic thinking is evident in the formulation of ethical rules and research policy, and in the organization of health care — and it strongly influences individual people's conceptions and personal choices. To be defined as Researcher (villain or hero) by the Public thus makes demands on the individual, with both professional roles and private attitudes to biomedicine the objects of much soul- searching. It is the interaction between these structural processes and individual attitudes that is the focus of the analysis. This essay will show what is included in the category of Researcher and will discuss whether ethical positions are integrated in biomedical knowledge production.

My analytical starting-point is a cultural analytic, ethnological, and critical medical anthropology (see Lock & Nguyen 2010; Pálsson & Rabinow 2001). I also draw on studies that discuss the social and cultural constructions of categories. Just as there is no 'pure' public, as Herbert Gottweis (2008) calls it, there is no pure expertise. These theoretic models and assumptions emanate from complexity and aim to describe which conditions pertain, but also ask why and what the societal consequences might be (Lundin 2008). Against this background my assumption is that there is a risk in creating watertight lines between different groups, in this case between Researcher and Public. Groups find it harder to exchange thoughts than individuals — and communication is what is needed when dealing with the complicated issues of biomedicine. It matters whether we talk about researchers as scientific representatives or if they are described as people who do research. Representatives are often defined in black-and-white terms, whereas individuals are complex, contradictory, and situation-specific. Unlike studies that examine Researchers (Bourdieu 1984/1992; Knorr Cetina 1999) I would like to dismantle these categories and show how individual researchers may choose to reason on ethical issues. Running throughout the essay is the idea of what ethics, or rather what the talk about ethics, mean to researchers when making their own professional role culturally manageable (Høyer & Tutton 2005).

The main empirical material consists of the exchanges among a discussion group of researchers from Lund University in Sweden, where the work is highly charged with hopes and fears. The discussions took place in 2003–2004. This material is viewed against analyses from some of my previous work and recent studies in biology and culture. My starting-point is that the participants of the discussions are researchers as well as individuals in a culturally determined, reflexive society, and I will consider how they navigate between different kinds of attitudes — between their evident place in a profession and an equally evident belonging in an overall cultural system. The essay thus presents how they sometimes voice the kinds of opinions that the Public has ascribed to them as Researchers, and sometimes express their private moral perceptions that at times coincide with the perceptions of laypeople, but also how the participants in the discussions offer strategic and pragmatic formulations that illustrate the inner logic that runs the professional community — and they open the way to what the culture sociologist Pierre Bourdieu, in the introductory quotation, aptly calls the kitchen of science.

How it all started

Through his arguments on position-specific fields — meaning those arenas in which the struggle turns on specific interests, such as the power to define what is knowledge and what is morally acceptable — Bourdieu (1984, 1984/1992) provides tools with which to tackle the role of bioscience in society. But as he himself says, it is hard to enter the specialists' kitchen and learn about the research process. For my purposes, finding out how ethical reflections are manifested in the research community, the focus has to be on operating on the level of the individual or rather towards the interaction between individual and society. The anthropologist Emily Martin (1994) has described this process as a complex system — a communicative network that entwines individual and biological entities with social contexts (Lakoff & Johnson 1999). One way to approach these complex systems and to enter the specialists' kitchen is to conduct focus and conversation groups.

For many years now I have had repeated contacts with biomedical researchers. Many of them have wanted to reason with me about their own researcher role and the expectations of society. Many of them have also wanted to discuss ethical issues that have emerged in the course of their own research. As part of the Swegene consortium's programme, for instance for stem cell research in Sweden, funds were earmarked for ethical and cultural investigations of this research. Thus I had the opportunity to supplement my private experiences and conduct a project in a more systematic way, to gain insight into the activity of the nerve cell and stem cell researchers. During my fieldwork at their workplace, the Neuronal Survival Unit, one of them proposed establishing a discussion group. So it was that 'Discussions about bio-technology and bioethics' was established and continued regularly for more than six months during 2003 and 2004. The participants of the group decided the topics for the discussions themselves. Apart from the medical researchers and me, an ethnologist colleague participated. Since the purpose was to create an environment that allowed the researchers to reflect in as impartial a manner possible on their own work and on biomedicine in general, the role of the ethnologist was to listen and record the discussions.

In the public interest

On several occasions, the group of researchers' conversation came to revolve around the commerce in cells, tissues, and organs. At the very first meeting, there was a lively exchange of views about the way in which organs should be made available. Among other things, the discussions dealt with what attitude to take towards the fact that some countries claim organs of executed prisoners for use as objects of study or for medical treatments. One person in the discussion group said:

Perhaps you remember 'the sliced man'? He was a prisoner in the US who was going to be executed and who announced, 'When I die, I'm donating my body and you can slice it up and use it in virtual education or for studies.' So he ended up on the Web, where everyone could study his body. This is an interesting moral dilemma, and I don't really know how it ought to be handled. But why should it be more wrong for a condemned prisoner's body parts to be used than for organs of brain-dead people to be donated? But still, you get a strange feeling. More or less like when the Chinese state uses and sells organs from executed prisoners.

The researcher who raised the question was not alone in this hesitation. Several of the other people in the discussion group were against the idea of individuals being reduced to research objects and their bodies being at the disposal of authorities. This obviously felt problematic: not only the death sentence in itself, but the fact that in connection with organ donations, the body is at the disposal of other people and not the individual himself. As the conversation proceeded, however, an awareness of the complexity of the question emerged. One researcher pondered as follows:

But, actually, there's no difference from what we're doing ourselves. We work with nerve cells from aborted fœtuses because we want to crack Parkinson's or Alzheimer's. And in the same way as with the lives of the Chinese prisoners, it's been decided that the lives of these fœtuses will be eradicated, and so they can just as well be used for a good purpose, developing cures for neurological disorders.

Several others concurred, with comments such as:

Yes, that's the way it always is, society or the state 'decides' what goes. In Sweden we don't accept the death penalty, which China does, but abortion is allowed here, and doing research on fœtuses as well.

A contributing factor to the group's interest in discussing the body and human life may have been the ongoing scientific and societal debates about whether it was acceptable to patent human stem cell lines. These issues, then very much in evidence in public debate as well as in the group's thoughts, are one of the more important questions in modern health care. The tense relationship that characterizes premodern as well as modern medical science appears here — the fact that the striving for the human being's bodily health goes hand in hand with the objectification of the person. If new medicines are to be developed, it is necessary that individuals be transformed into research subjects, or even that parts of their bodies become commercial products. This commodification, by which body parts become merchandise, is illustrated by the HUGO project's mapping of the human gene pool and the patenting of genes (Pálsson & Rabinow 2001).

The conflict that arises between transplantation technology and people's discomfort vis-à-vis the dispersal of the body is often dismissed as irrational behaviour, superstition, and folklore. All the same, this play between body and society does more than hint at basic values in Western culture, at norms with the capacity to support both the development of modern biotechnology and people's attitudes towards this technology. With modern medicine, and not least its transplantation techniques, has come a view of the body as composed of interchangeable parts that can be utilized by many. Yet there are other systems of thought, in Western society as in many other cultures, where the body appears as an autonomous and delimited system. Every division of this unit, according to Mary Douglas's classic studies of the body as a symbolically charged element in an all-embracing cosmology, threatens the very foundations of society as well as the individual (Douglas 1966/1979). The law against taking, providing, or receiving organs from a living human being for profit emanates from such a Western model of thought (SFS 1995:831). Other examples are the resistance against the patenting of human genes, and scientific discussions about whether cells in the laboratory are research objects or human individuals.

The question of the ownership of the body, of the autonomy and individuality of the human being, is something most disciplines have pondered. Immanuel Kant's ideas about the value of life — the thought that every individual is created for his or her own sake and is never a means for anyone else — are a philosophical cornerstone (see Svenaeus 2012). Its ostensible opposites are theories that apply a utilitarian perspective, where the individual is set aside in favour of what is best for society (Singer 1990). These and other value systems function as invisible and intuitive guiding rules in people's lives. But unlike philosophical principles, the various guiding rules have a tendency to get tangled up in one another when they start being put into regular use, as when ethics are converted into moral practice. This is a process that can be described as people's everyday experience going hand in hand with changeable, everyday ethics (Lundin 2002). This was also the case in the conversations amongst the group of researchers, which would swing between safeguarding the autonomy of the individual (fœtuses may not be used for medical purposes) and advocating the public interest (various body parts taken from an executed prisoner might save the lives of many people).

This is an illustrative example of what takes place when the category of Researcher is broken down into individuals — when the discussion group became a tool to capture the interplay of the individual researchers' private thoughts, the points of view of the researcher community, and the view of society. It is clear that the researchers' own thinking was in evidence in the group's discussions. As private individuals, many of them were critical of the objectification of individuals; as professionals they used a kind of substituting motif when doing their research, for example by stating that their work was in the best interests of the public.

Problematic use of the body

At one discussion meeting, I told the participants about the recent SIFO survey on transplantation (SIFO 2001; Lundin & Idvall 2003) and let them have a look at the questions and the results of the report. The questions dealt with established transplantation practices such as organ donation from one person to another, but also with xenotransplantations, where animal transplants are conveyed to human beings, and cell transplantations. Many of the survey answers coincide with the discussion group's views, but in some significant areas the answers from the survey differed. That was the case regarding the final question, dealing with whether advanced medical research should be conducted in the academy or in commercial biotechnology companies, where a clear majority (76 per cent) were of the opinion that the academy and university hospitals were the proper places for medical and genetic research. Historically, one of the distinctive features of the university, or rather the hallmark ascribed to academic researchers, is independent and almost altruistic research. Biotechnology companies are the university's symbolic opposite, characterized by commissioned research and profit-driven goals (ibid.). The work of the participants in the discussion group is performed within the university, but is still intimately linked with the pharmaceutical companies, which transform the researchers' results into medial products. It is, therefore, not entirely surprising that they found the SIFO study responses critical of their own work. Several of them turned defensive, and one of them said:

All this about genetically altering cells in order to cure diseases, yes of course there are different conceptions of that. On the whole, actually, I think that people have a strange picture of risks and possibilities — often it's totally irrational. If they only had the right understanding, if they could be properly informed and learn basic facts, everything would be simpler. As it is now, people are completely dependent on what the media put about — like super-people could be designed, and organs cultivated in labs for sale to the highest bidder.

Not all of the participants dismissed the SIFO study responses, but they were aware of, and even worried about, the existing connection between the results of their research and the needs of the market. One participant thought about what this connection means to humankind at an individual level.

It's not like we act as the buyer and the seller, but we create the conditions. We investigate a person in every detail, we break her down to cell level. I don't think that the soul is there, but sometimes I wonder what's really there. And what we do to it.

(Continues...)

Excerpted from The Atomized Body by Max Liljefors, Susanne Lundin, Andréa Wiszmeg, Alain Le Nouail. Copyright © 2012 Nordic Academic Press and the authors. Excerpted by permission of Nordic Academic Press.
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Edition details

• Publisher: Nordic Academic Press
• Publication date: 2012
• Language: English
• ISBN 10: 9187121921
• ISBN 13: 9789187121920
• Binding: Hardcover
• Number of pages: 240
• Editor: Liljefors Max