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Second Colloquium Report

Report on Second Colloquium of the Postgraduate Forum on Genetics and Society

Niall Scott, Lancaster University


Between 18-19 December 1998, the second meeting of the Postgraduate Forum on Genetics and Society was held at University College, London. This meeting was organised as a result of a successful first meeting of the group at Lancaster University in April 1998. Since then, the Postgraduate Forum has attracted the interest of many more students from institutions in both the U.K and in other European countries, including The Netherlands, Germany, Sweden and Finland. Taken together, these students represent a range of disciplinary perspectives from the sociological, the philosophical, the legal to the anthropological, which was in evidence in the six presentations that were given at the colloquium.

Research into the human genome has taken on different aims and is received differently in American and European cultural contexts. This introduces the complex issue of identity and how practices in genetics research are affecting the way in which the human being is conceived of as an entity. Richard Tutton (Lancaster University) addresses this issue in his opening paper, looking at ‘Culture and identity in European genetic diversity’. He notes that there has been ‘notable opposition to the human genome project in America’ because, inter alia its opponents represent the genetic origins of the Native American peoples in ways that conflicted with their own sense of identity and difference. The controversy that has surrounded this project has meant that any large scale funding from scientific agencies in the United States has not been forthcoming. There is however a very different situation in Europe, where the European Commission has funded human genetic diversity research and particular groups have positively received such studies as explorations of their heritage. This is clearly demonstrated by Tutton in his discussion of a BBC television documentary presented by Sir Walter Bodmer on his research amongst the population of Orkney, describing how genetics is interwoven other forms of heritage in the creation of a distinct cultural identity. He then compares the way in which the European commission has used heritage as a means of establishing a common European identity, asking how we might perceive genetic diversity studies as useful in the context of this identity formation.

Whereas Tutton is engaged in an issue which illustrates that geneticist are involved in finding the fundamental cultural identities of people through genetics research, Amâde M’charek, (Belle van Zuylen Instituut, Universiteit van Amsterdam) demonstrates in her paper, ‘Naturalisation of a Reference Sequence: Anderson or the Mitochondrial Eve of Modern Genetics’, that genetic or natural identities can be seen as a cultural product coming from within laboratory practice. Geneticist doing research on mtDNA, using mtDNA as a referencing sequence to align or identify all other DNA The referencing sequence, known as the Anderson sequence, she points out can be used as a piece of communication technology, acting as a base to which research results can be measured in terms of corresponding similarity or difference. As the ‘natural tool of comparison’ then, it acts as a reference sequence from which the relatedness of humans can be determined. In her article, she shows that naturalisation is not a matter of localising the mtDNA sequence as an object, but rather a matter of the universal claims that can be made by this object.” It is not the reference sequence which is perceived as natural, rather the results of the comparison to it. The use of the Anderson sequence illustrates how issues of gender, identity and race, arise in laboratory practice: Its origin in Cambridge as a synthesis of cell material from two individuals mainly from the HeLa cell line has led Anderson to be referred to as a British sequence. A biased can thus be interpreted in that differences between European sequences and Anderson are going to be less marked than differences between African sequences and Anderson. Not only in terms of the complex origin of the mtDNA genetic information (as the HeLA line stems from Henrietta Lacks, a Black American carcinoma patient) but the availability of placental tissue in the eighties means that M’Charek insists that the racial bias in Anderson is not ideological but rather due to the tissue availability and cloning technology regime in laboratory practice in the eighties. She also points out that the gender bias is not ideological since the availability of mtDNA is interchangeable between males and females even though it is inherited maternally. The presented Britishness of Anderson is a product of the organisation of science and the geographical location of the cloning and sequencing work, rather than any inherent property of the mtDNA reference sequence itself. M’Charek suggests that this sequence can most aptly be referred to as the “mitochondrial eve of modern genetics.” In conclusion then, the contextual practice in which referencing sequence arise can never be neutral Both Anderson and all individuals become standardised in terms of mtDNA. The problem lies in the nature of the comparisons made to Anderson, not the naturalisation of Anderson as a tool in population genetics, as it does not represent all individuals or global populations. The universalisation which results from using comparisons to Anderson homogenises individuals into a mitochondrial family and does not include the variety in the behaviour of DNA or the technologies and practices by which the research is carried out.

The conceptual framework in which genetics research takes place can also be situated in a larger evolutionary worldview. The role of identity and culture is developed in relation to a view of a human being specifically as a biological organism. Given this evolutionary context, Niall Scott, (Lancaster University) discusses how the ethical dimensions of the genome project and genetics research centre around issues concerning the use and misuse of information and the nature of identity. The paper explored the relationship between the biological view of the origin of ethical behaviour, expressed as the tension between altruism and egoism and the genome project as a moment in evolutionary development. He asks for consistency between the general framework of theories concerning natural selection and the direction in which the genetic research is heading. This has broad implication for the ethical issues which genetics research raises, such as eugenics and progress. Furthermore the question of what kind of behaviour is manifested in the human genome project, egoistic or altruistic, according to its aims will have a profound impact on how the moral domain of the project will develop.

Adam Hedgcoe (University College London) examined the classification of diabetes as changing form a disease classified on symptomatic grounds to its current position of being viewed as a genetic condition. He showed how the process of geneticization has required the reclassification of the condition in terms of different forms being linked to different genes, leading to new forms of diabetes, type I and type II. His paper focussed on the way in which research has been presented in review articles to persuade readers of the genetic reclassification of diabetes. In the literature concerning attempts to rename or re-identify diabetes as genetic, there are problems of ambiguity and relating symptoms to the new genetic origins and his paper looked at the way in which such data was included in the view of diabetes as a genetic disease.

Moving from conceptual to applied issues, Shaun Pattinson of Sheffield University presented a report on his work in collaboration with Prof. D. Beyleveld on assisted reproduction regulation in Europe. It continues from his presentation in the previous PFGS meeting where Pattinson presented some of the moral and legal issues concerning assisted reproductive technologies. Pattinson’s work takes an interest in the moral philosophy of Alan Gewirth most notably the principle of generic consistency. Giving a description of the regulation concerning assisted reproduction, embryo research, cloning, germline gene therapy pre-implantation genetic diagnosis and prenatal diagnosis and abortion, He discusses the legislation concerning assisted reproductive techniques involving in vitro storage or use of embryos. According to Pattinson, where assisted reproduction is addressed by legislation, it only encompasses those assisted reproductive techniques that involve the storage or use of embryos or gametes outside the body. He also notes that there is furthermore no consensus on whether medically assisted reproduction ought to be made available to single women and homosexual couples.

Advances in genetics research in the field of medicine have both produced reasons for optimism in dealing with genetically related diseases as well as matters for ethical debate, most profoundly the issue of genetic screening, allowing the predictive testing for the presence of genetic disorders in the embryonic stage of development. Jane Gow (University of Glasgow) addressed the experiences of young women with conditions identifiable through diagnostic testing and these women’s views on new developments in reproductive technology and genetics. By investigating the beliefs and values expressed by fourteen women with cystic fibrosis Gow presented an investigation how their experiences relate to their condition and how the ‘severity’ of cystic fibrosis is defined. The severity of the condition relative to the implication of the routine screening process, which implies, as Gow puts it, that prevention is necessary and appropriate and whether there should be limits on reproductive choice. Her findings indicated that these women had a wide range of experiences in living with the condition and reported a general positive approach to life. Interviews indicated that their condition was seen as objectively serious, but the relative severity of cystic fibrosis is seen differently by the women in the research, as this was found to depend on how they as individuals were affected by the condition. The objective seriousness of the condition is related to the short life expectancy, where as the quality of life varies with the progression of the condition. There were those women who saw Cystic fibrosis as a serious condition, welcomed the introduction of screening but did not express favour for abortion. Others saw the condition as less serious because of their experience of their quality of life and an optimistic approach to the future. Here ambivalence was expressed concerning importance of prevention of birth of CF carriers, suggesting strongly that abortion to be inappropriate. Views varied on the advantages or benefits of having accurate information concerning results of screening, because of the varied way in which the seriousness of the condition is perceived. Her conclusions were that there was no consensus on the issue of severity in the group studied and the need to reduce the incidence of the condition. Gow points out that if routine CF screening is introduced, it would be the first national screening programme for a genetic condition.

In addition to these six presentations, Tom Wilkie of the bioethics programme at the Wellcome Trust was also invited to address the Postgraduate Forum on the first day of our meeting. He outlined the aims of this new programme and described the scope of research for which the Wellcome Trust was keen to develop and provide funding.

Note:

The organiser of this meeting, Adam Hedgecoe, would like to thank the Department of Science and Technology Studies, the Graduate School and Beck Hurst for their kind assistance in arranging this colloquium.

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