Genetics and the Interstices of Knowledge
A report on the Postgraduate Forum for Genetics and Society 5th annual colloquium, University of Nottingham, July 2001
The annual colloquium of the postgraduate forum for genetics and society comprised delegates from a range of disciplines including anthropology, psychology, sociology, law and ethics. Although the forum is based in the UK, the growing number of members from elsewhere in Europe were also represented.
Many of papers presented can be situated within the critical social science literature about the dynamics of relationships between different kinds of expertise. The confronting of specific and apparently novel problems in this field was used too as a vehicle for the working through of debates in and beyond the social sciences about how we as societies and individuals frame and respond to risks. The themes covered can be divided (with the customary arbitrariness) into the following: firstly, governance and regulation; secondly, critiques of concepts in ethics and law; thirdly, representations of genetics- including both the issues of control of representation of science and the representation of views of >affected’ lay individuals by social scientists; and finally, papers concerned primarily with lay action and agency.
regulation and governance
The state response to the body of practices collectively recognised as biotechnology was the subject of five papers. I include here those papers which concern the ways in which law and ethics can be developed or are deployed in this context. Mavis Jones, from the University of East Anglia addressed the gap between the proliferation of policy responses and the mistrust amongst the public(s). Her discussion was based on a discourse analysis of directives from the EU (relating to the use of GMOs), guidelines from the Health and Safety Executive and documents from the UK’s Human Genetics Commission. These discourses were found to fall under two main themes: risk and transparency, each of which was related to a >grand narrative’, of rationality and democracy respectively. For Jones, these apparently newer discourses act as a kind of >lingua franca’ in the debates about innovation; nevertheless, they >may in fact serve to reproduce traditional approaches to science policy’. Understanding such discursive practices then may be helpful in identifying the strengths and weaknesses of policy regimes in this context.
The impact of different regulatory environments on biotechnology companies was addressed in a paper presented by Filippa Corneliussen from the University of Nottingham: interviews with founders of biotech companies, their management scientists and senior scientists were used as data for a comparative analysis of the regulatory regimes in Scotland and Norway. Very different regulatory regimes were shown to characterise the two nations. In Norway, informal networks between scientists and regulators manage much of the day to day work of compliance. There are serious penalties for not complying with the extensive regulations surrounding biotechnology industries in Norway; however, these have rarely been applied. A more formal and bureaucratic style of regulation exists in Scotland. In both cases, however, those interviewed did not view the raft of regulations as inhibiting their company’s formation or development. Thus the commonly held assumption that extensive regulation in this sensitive field impedes the development of science R&D was not supported by Corneliussen’s evidence.
Some of the implications of considering genetic information as >special’ were highlighted by James Mittra (University of Warwick) in a paper which analysed the developments which have taken place in relation to genetic testing and insurance in the UK over the last six years. Much of the debate, according to Mittra, takes place around possible future scenarios, whilst current problems are not squarely addressed. Defensive policy making around short term goals characterise the terrain here, with insurance companies staunchly defending their right to underwrite and the government primarily concerned with allaying fears of genetic discrimination. The argument developed here was that the >special’ attention given to genetic information complicates the debate and frames the way that individuals and groups respond to the issues. This issue was echoed in other papers throughout the symposium, which struggled to consider the ways in which >genetics’ is special -or not- in a range of contexts. Mark Taylor, from the University of Sheffield, explored the implications of this in relation to provisions against discrimination in the Human Rights Act 1998 (HRA). The issue of genetic regulation within the contractual context is still largely unregulated in the UK. A widespread assumption is that the law requires development to tackle potential injustices. However Mittra questioned the extent to which the incorporation of HRA into UK law will support such a development: he believes that whilst the principles of HRA would support the proscribing of unfair genetic discrimination, they would fail to support a blanket ban. This left us with a discussion of the possibility that there could be >fair’ genetic discrimination.
A paper addressing the effectiveness of the UK’s Local Research Ethics Committees (LRECs) as quasi regulatory bodies in the context of research was presented by Emma Williamson (University of Bristol), on the perspectives of participants in epidemiological genetic research. The project will draw on interviews with participants in a longitudinal panel who have been intensively researched via their donation of samples and of medical and lifestyle data. Both the genetic research project and the accompanying social science inquiry presented here include children as participants, an issue of particular interest to the (social) researchers. The question of the particular place of social research within the UK’s Research Ethics Committee system was discussed. Broadly speaking the approach here was to support the extension of the current system of ethical review to include social research. (This is the practice in many parts of the UK, but perhaps less consistently so than with the experimental or clinical research which these committees were designed to oversee.) In the next section I discuss papers which can be considered as offering a critique of concepts or institutions in bioethics and in law.
critiques of ethics and law
Klaus Hoeyer (University of Copenhagen) drew on fieldwork with those involved in collecting and donating samples for genetic research in Northern Sweden. His observation that donors did not show any particular interest in the information offered in the course of obtaining informed consent for this research led to a discussion about the ritual aspect of such a procedure. There was a challenge here to the way that the social issues around new genetics become reduced to the obtaining of informed consent. The practice of giving blood was analysed in the context of the ethos of the Swedish state health care system. Hoeyer’s suggestion that we see the donation of blood less as a conscious expression of meaning and more as a practice brings us to some of the methodological issues about interviews which are discussed below. Oongah Corrigan (Goldsmiths, London) also addressed the processes of obtaining informed consent in the field of drug trials and pharmacogenetics in particular. With research in pharmacogenetics, we have an expansion of the extent and the contexts in which DNA samples may be requested from patients. For Corrigan, the formalised practice of informed consent. and other procedural approaches cannot substitute for research looking at the areas of tension or concern for patients in these trials. Traditionally, these kinds of dilemmas are not situated in an empirical context- although this may be said to be changing- and the bioethics model less regard to the dynamics of doctor/patient or expert/lay relationships than does sociology. This analysis emphasised the way in which particular perspectives in ethics -derived from Kantian universals- have shaped bioethics.
Continuing this critical engagement with core concepts in bioethics was Harald Schmidt’s paper about the use of the concept of human dignity, a concept frequently invoked in discussions of bioethics, including those around the assisted reproductive technologies. Schmidt (University of Munster) claimed that such a concept is of very limited use in the case of pre-implantation genetic diagnosis. Indeed, it was suggested that >human dignity’ tends to be used as a way of stopping rational argument, particularly by those opposing scientific developments in this context. In support of this claim, Schmidt reviewed the ways the concept has been deployed in theology, philosophy and in political and legal contexts. Its prominence in the latter context was traced to the aftermath of the Nuremberg trials and the concern to protect the rights of (born and living) people which is etched into the charters and declarations of that era. With reference to pre-implantation genetic diagnosis, Schmidt challenged the debate about the >true’ moral status of the embryo with a position that that status could and would change over time. He did not argue for or against pre-implantation diagnosis, but that the use of the concept in this context was obfuscating a debate which desirably should take place >by society as a whole and not a particular society’.
Finally in this section, Anne Wilkinson (University of Leeds) addressed the presumption of liberty, taking the position that such a presumption should be set aside in the case of new reproductive technologies. Beginning with a consideration of the limits of philosophical tools of utilitarian and consequentialist reasoning for this field, where some of the problems are difficult to predict, Wilkinson went on to consider the role of theology and of the law in this context. Following Devlin (1965), Wilkinson suggested that the law could be seen as a boundary marker >like an inter-country borderline, which meanders according to geographical and historical factors’. It was suggested that the new statutory and advisory committees composed of representatives from the science, the law, religion and >the laity’ were crucial mediators. As though to reiterate the difficulties here though, the following set of papers address the diverse kinds of expertise which are brought to bear on social issues raised by developments in the new genetics.
representations of genetics
Sarah Cassidy (University of Edinburgh) considered the claims about the evolutionary and by implication genetic basis to human behaviour and society in the field of evolutionary psychology. A quantitative survey of coverage of evolutionary psychology in the UK broadsheet press was used to look at the uptake and diffusion of these ideas. In contrast to >classic’ patterns of science coverage, media coverage here was found to stress the political and social implications, and is seen as having a wider relevance. The paper concluded with a comment about the emergence of competing discourses on genetics in the context of a move towards greater inclusiveness in policy processes. The contested nature of these discourses was the subject of Nicola Lindsey’s paper. Lindsey (Imperial College, London) unpacked some of the conceptual issues around the use of the term >gene talk’. In early formulations the term referred to >the use of genetic language in secondary and tertiary contexts, apart from the disciplinary practice of genetics’ (Howe and Lyne, 1992: 112). This paper underlined the extent to which the term >gene talk’ has been mobilised to support notions about which knowledge (and talk) is legitimate and which is not. Examples of such contests were cited from within science Bthe critique of sociobiologists by molecular geneticists being one such- and from scientists’ challenges to the validity of lay people engaging with the subject of genetics in a particular social context.
In a dramatic paper entitled >Determined to kill’ Jennifer Bostock from King’s College London deployed a series of images in which >abnormal’ brain physiology and >fatally damaged’ DNA were said to be represented amongst other >normal’ examples. These aimed to put the audience in a position analogous to that of a jury presented with expert evidence for a claim of >genetic defense’ in a court of law. The paper explored the question of how courts are to interpret the results of genetic research, and the extent to which there is anything uniquely deterministic about such a defense in comparison to for example relying on psychosocial evidence.
Moving to the interstices between lay and medical more specifically, two papers considered the significance of genetic counselling. For Melanie Pearce (University of Nottingham), genetic counselling is a key site for the dissemination of scientific knowledge about genetic disorders. Yet there is a paradox here as the traditional rationale for such counselling involves a stance of non-directiveness. Based on semi-structured interviews with genetic counsellors, Pearce explored the process of this work, and the different expectations brought to the genetic counselling sessions. Georgina Haarhoff from the University of Cambridge drew on interviews with individuals diagnosed with colorectal cancer and with their spouses to explore the impact that a subsequent genetic diagnosis has on the individual: Haarhoff posed the question of whether the genetic diagnosis in itself is associated with a particular orientation towards the experience of having cancer.
Discussions about methodologies were interwoven with the substantive points which I have made above, but two papers in particular addressed methodological issues about interviewing specifically. Caroline Benjamin (University of Liverpool) outlined a model for research which would enable account to be taken of linked historical events in the experience and referral of women to a breast cancer family history clinic. Life course methodologies were used here to locate individual women’s experiences in relation to time, place, and institutional contexts, including for example the NHS. Based on initial interviews, themes relating to >intergenerational transference’ were discussed, and in this context the significance of a particular chronological age with fear of illness was marked. Lotte Huniche from the University of Copenhagen spoke of her conversation with one individual who is >at risk’ of developing Huntingdon’s disease, and whose relatives portray him as not actively speaking of or doing anything about it. The discussion of this persons’ life trajectory was used as a way of considering the perspective of those whose voice is not expressed, who are considered passive, and how they may differ from those seen as active. It is the latter group, inevitably perhaps because of their accessibility, who are usually the focus of social research. This presentation fed into a discussion in which the pre-eminence of interviews in this field of research, together with the normative assumption that narrative is process for establishing control, were questioned.
lay action and agency
Sahara Gibbon (UCL) explored the work of a cancer charity, drawing on her fieldwork with the charity which is active in fundraising and lobbying for a particular cancer. The organisation has become a funder of research in its own right, and it was the role of lab tours for supporters (including relatives of those who had died from the illness) which were described in the paper. In addition to their more obvious function of informing supporters, these tours could, in Gibbon’s analysis, be considered as memorial events, as the presence of plaques and names on a memorial wall hint. Whilst such memorialising >could be redemptive for those involved, the tensions between remembering and forgetting are a feature of such practices’.
The ways in which hope is mobilised featured in Carlos Novas’ (Goldsmiths) discussion of the way in which patient and lobby groups in the USA intermesh with the work of geneticists and other scientists and practitioners. Taking the example a particular lobby group concerned with a rare metabolic disorder, he described how this group had played a key role in research to the extent of setting up a tissue bank and becoming a co-applicant for a patent in this context. The ways in which different interests intermesh are shifting, and the notion of a >political economy of hope’ was used by Novas as framework for the analysis of such developments. Sara Skodbo’s paper about technological information, identity and food in Norway was concerned with >the under-researched mechanisms behind everyday appropriation and negotiation of new technologies in industry’. Skodbo, from UCL, drew on her fieldwork in the food industry in Norway to explore how the uptake of technology depends on interactions with local knowledge and notions. In doing so the paper challenged the implicit assumptions in actor network theory and stressed the agency of the individuals involved.
Vajira Dissanayake (University of Nottingham and University of Colombo) presented preliminary results from a survey of attitudes to new reproductive and genetic technologies amongst doctors in Sri Lanka. He moved on to explore the ways in which a Buddhist cultural background may frame the debate associated with such technologies quite differently than it has been framed in Western Europe: a different stance on tissue donations and a profound sympathy towards overcoming reproductive failure was cited as examples of this. Dissanayake described the ways in which genetic predictive tests are commonly taken up by those with illness whilst also consulting a horoscope reader. This was a timely reminder of the pluralism of knowledge about illness: despite the pre-eminence which genetics has gained in recent years, it takes it place within a broader set of social responses to suffering of which orthodox medical practice is but one part.
Delegates were grateful to Filippa Corneliussen for coordinating the colloquium.The 6th annual colloquium of the PFGS is planned to take place in September 2002 at the University of Cambridge. Those interested in attending may contact Georgina Haarhoff at grh25@hermes.ca.ac.uk or refer to the PFGS website http://www.nottingham.ac.uk/sociology/genetics/pfgs.
References
Devlin, P (1965/1990) Law, liberty and morality. Oxford: Oxford Unversity Press.
Howe, H and Lyne, J (1992) Social Epistemology, 6,2.