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Colloquium 1998

Colloquium 1: 17 April 1998, Lancaster University

This meeting was organised by Richard Tutton and hosted by the Department of Sociology at Lancaster University.

At this colloquium Jimmy Endicott, Adam Hedgecoe, Shaun Pattinson, Niall Scott, Andrea Stockl, and Richard Tutton presented papers and other participants included David Cumner, Wan Ching Yee, Annie James and Kate Harkavy.

You can find a report of this first colloquium in the EASST Review, vol. 17 (2), June 1998, pp. 20-24, and another version in Network, Newsletter of the British Sociological Association, October 1998, p. 25.

Presentation Titles

Jimmy Endicott

‘Dollymania: an examination of media portrayals of cloning’

Adam Hedgecoe

‘Geneticisation, medicalisation, and polemics’

Shaun Pattinson
‘Access to assisted reproduction in the UK: morality, law and practice’

Andrea Stockl

‘Embodying genetic disorder – the case of SLE’

Richard Tutton

‘Writing the human’
The EASST Review, vol. 17 (2), June 1998, pp. 20-24 ran with this report from the first colloquium, which we archive here. 

The Postgraduate Forum On Genetics And Society

by Adam Hedgecoe and Richard Tutton

As Sarah Franklin rightly points out, science studies now exists as a wide and diverse research initiative that is rightly characterized by its critics as comprising an established scholarly field within the academy (Franklin, 1995, p. 166). Those working within it question directly the positivism and universalism of western science, and seek to describe its discourses as cultural practices imbricated in the social and historical conditions of the society in which they are produced. This general task has produced various factions and epistemological positions, from science and technology studies, to science policy, to the history, philosophy, and sociology of science and scientific knowledge, around which new courses and departments have been generated in both Europe and the US. Beyond these more explicit areas of research, there are many other engagements with the sciences in the wider academic community, from philosophy, anthropology, to linguistics, and literature departments that subject scientific texts to the kind of analysis once reserved for literary texts. However, despite being fundamentally interdisciplinary, the more formal boundaries in many universities, particularly in the UK, still remain a barrier between these different approaches, methods, and levels of analysis. This situation has made it difficult for postgraduates, entering this more nebulous field of science studies, to communicate with their peers (other than at formal conferences) and to discuss common points of interest. For this new generation of researchers, we wanted to overcome these intellectual and practical obstacles, to create a forum for the exchange of ideas, resources, and approaches, to create a space, an informal and supportive environment, to present our work in progress.

Therefore, on 17 April 1998, the Department of Sociology at Lancaster University hosted a one-day postgraduate colloquium on the sociological, anthropological, and philosophical implications of developments in the field of human genetics.1 The focus of this colloquium moved away from standard bioethics research that is often more concerned with establishing protocols or identifying concerns of potential users of new techniques or treatments. Whereas our aim was to initiate more critical and interdisciplinary engagements and to create a distinct postgraduate research identity. The papers that were delivered featured the ongoing work of six researchers all wishing to address broader points of interest.2 These included the media representation and public perception of biotechnologies, the far-reaching issue of the geneticization of medical and social discourse, access to reproductive technologies, the philosophical discourse of molecular biology, the lived experience of genetic disorders, and the Human Genome Diversity Project. In this article, we would like to highlight each of these papers and discuss their specific areas of research.

The way that newspapers, television, and radio present new scientific developments, address ethical, philosophical and social questions, and interrogate individual scientists on these issues is crucial. Jimmy Endicott (Nottingham Trent University) in his paper Dollymania: an examination of media portrayals of cloning, describes the hysteria and moral-panic generated by the announcement of a cloned sheep in February 1997 mainly, but not exclusively, in the UK media. Endicott highlights how the media used the familiar frameworks of science fiction and religion to describe a complex scientific process and its equally complex ethical issues. He argues that the responses by the media to innovations such as transgenic cloning shape public perceptions about other possible biotechnologies that could be developed. The UK Human Genetics Advisory Commission has now begun its public consultation on nuclear transfer and Endicott expresses the fear, no doubt shared by many scientists, that the public at large will not be able to make an informed decision on this due to the bias in news management and reporting. The public representation of science has long been an important issue for both science and its critics. For example, in the UK, the Royal Society report (1985) on the public understanding of science brought about a whole new area of investigation. Working from a deficit model in which an undifferentiated public is regarded as generally ignorant of the sciences, the level of its understanding has been measured and assessed. There has also been a concerted effort to promote a particular vision of science in the media through engaging and accessible programmes that show science being done in certain ways. No doubt, in light of the Dolly incident, the scientific community shall become more cautious when dealing with parts of the media. However, this incident has to balanced against the representation of science in specialist television programmes in the UK, such as those produced for the Horizon (BBC2) or Equinox (Channel Four) strands. The recent controversy over the Against Nature programme on Channel Four in which those critical of certain scientific developments, such as David King the editor of GenEthics News, were claimed to have been treated unfairly, is only one example of where a pro-science bias is clearly evident. Another programme, Gene for Genius, featuring the work of Robert Plomin on the identification of the heredity of intelligence which also featured King, failed to disclose how he and the Campaign for Real Intelligence (CRIT) had lobbied the MRC to end funding for this kind of research. The programme did not address the very specific issues of concern raised by the CRIT (King, 1997) and presented, on the whole, the views of those who supported Plomins work.

Media representation also features in one of the most significant and difficult questions facing researchers in science studies. Has Western contemporary culture undergone a process of geneticization by which individuals and their characteristics are increasingly seen as a consequence and in terns of their DNA? Adam Hedgecoe (University College London) in his paper Geneticization, Medicalisation and polemics sets out to critically examine this question. He looks at Abby Lippmans term geneticization and its analogue genetic essentialism, used most notably by Dorothy Nelkin and Susan M. Lindee (1995). These are often the main starting points for discussion of genetics in medicine, health care, and the heredity of behaviour. For example, we often hear the expression that someone has a gene for a certain trait, such as intelligence, aggression, addiction, or shyness and popular magazine articles are asking whether Were you born that way? (Colt, 1998).

Moreover, since the description of the structure of DNA and its pronouncement as the secret of life, images of the double helix have proliferated in popular culture, with genetics and genetic engineering featuring more in film, from Twins (1988), Alien3 (1992), Alien: Resurrection (1997), to Gattaca (1997). And those who have been watching British television could not have failed to notice Professor Steve Jones sharing his vision of a genetically engineered future for the Equitable Life commercial or his lecture on evolution for Renault. With their focus clearly on the last decade, Nelkin and Lindee argue it is not surprising that this popular appropriation of genetics should begin just as the Human Genome Project (HGP) is underway with scientists actively promoting it in the popular media and in popular science texts. However, Hedgecoe asks, is there actually a qualitative shift in explanations that privilege genetic factors over the environmental, which would justify the claim that western society has become geneticized? Or it is only a new figuration of a long tradition of hereditarian discourse? Indeed, the term genetic essentialism seems reminiscent of biological determinism used by writers such as Steven Rose, Richard Lewontin and Leon Kamin (1990), even if now the level of determinism has shifted from the physiological to the molecular. And they argue that this biologism has existed for centuries in a variety of discourses in the West. Hedgecoe also looks to more recent work by Celeste Condit who has used quantitative data as a way of approaching the question of geneticization. Condits research reveals a decrease in the number of articles in popular magazines in the US attributing influence to genetics only. However, the evidence to support or refute the geneticization/genetic essentialism thesis remains ambiguous, so Hedgecoe argues for a certain caution when using such encompassing terms and calls for further empirical research. Two papers delivered at the colloquium outline the different kinds of philosophical engagements with genetics that are possible. In his paper, Access to assisted reproduction in the UK: morality, law and practice, Shaun Pattinson (University of Sheffield) also acknowledges the role of the media — through sensationalising certain examples, such as Diane Blood or Mandy Allwood — in determining the public perception of who should have legitimate access to assisted reproductive technologies (ARTs). For Pattinson these technologies are a paradigm of moral conflict. By applying a model developed by the philosopher Alan Gewirth, called the argument to the Principle of Generic Consistency, he argues that all individuals have certain rights, which includes the right to eproduce. This right can be expressed either as a positive, meaning that assistance should be given to allow that individual to reproduce, and a negative, meaning that the individual has the right to reproduce without interference if so wished. If any of these rights are denied then that individual is harmed, s/he might feel personal grief, or a lack of personal fulfilment. Once Pattinson establishes the philosophical argument for the universal right to reproduce, and with certain qualifications, the right to be assisted if so desired, he turns to the requirements and practices surrounding the access to ARTs. He notes how certain individuals are denied access to these technologies that reflects the power structures around sexuality and reproduction in UK society. According to the 1985 Warnock committee, it is morally wrong to allow lesbian or single women access to such technologies because, it is claimed, the interests of the child are best served in a two-parent heterosexual environment. Pattinson argues that this is an indefensible position to maintain in terms of the philosophical model with which he is working. Then, in a strong and provocative argument, he questions the very decision making mechanism that regulates the access to and operations of ARTs in the UK, the Human Fertilisation and Embryology Authority (HFEA). He critically examines how the membership of the HFEA is decided and suggests how its decisions could be more democratically accountable. The latest development to increase the success rate of ARTs is pre-implantation diagnosis, which will again complicate the moral position Pattinson and other researchers will adopt. In a recent front page article in the newspaper, The Independent, it was disclosed that 50 children had been born after being screened for genetic defects (Laurence, 1998). These included the single gene disorders Cystic Fibrosis, Duchennes muscular dystrophy, and Taysachs disease. More troubling, BrCaI, which gives women a 80 per cent chance of developing breast cancer, usually around middle age, is likely to be the next test.

The other engagement, with more metaphysical implications of genetics, comes from Niall Scott (Lancaster University) in his paper `Necessity, contingency, and identity in evolutionary theories.’ Scott is prompted in part by the writings of eminent scientists such as Steven Jay Gould, Richard Lewontin, Steven Rose, Richard Dawkins, and Jacques Monod from whose book Chance and Necessity, he derives the twin foci of his research — the random and the contingent vis a vis invariance and determinism in evolutionary accounts. As the two poles around which such theories turn, this is a very interesting area of research that shows the difficulty in striking a balance between them when explaining the emergence and continuation of biological organisms. Monod, a molecular biologist, writing just at the end of the golden age of his science in 1970, discusses how the randomness at the molecular level is governed by certain structural laws. There is, for example, a universal genetic code even if there are an almost infinite number of possible combinations that could create new and different proteins.

However, what Monod is keen to stress is that things new and different don’t happen all that often, but when they do, they are faithfully copied to future generations. Gould, on the other hand, looking at the matter from the level of the organism, sees the evolution of humans, as with any other species, as a purely random and unlikely event. Rose and Lewontin argue along similar lines to Gould here, not accepting fully the adaptationist explanation for the evolution of species that seeks to account for all mutations in terms of giving selection advantage. They point instead to other random forces that might give rise to neutral mutations with no obvious advantage. There is also a question of level and perspective, since a random mutation at the molecular level does not necessarily produce one at the level of the phenotype. And mutations between many different organisms do not necessarily affect the identity of the population in which it is situated. This whole tension between chance and necessity comes from trying to account for the reproduction of relatively unchanging and highly complex organisms while trying to move away from narratives of design and teleology which are part of that quagmire marked with the warning sign eugenics. The most recently heralded example of how the science of genetics will bring about a change in the philosophical understanding of what it means to be human is the Human Genome Project (Bodmer and McKie, 1994). Again the relationship between chance and necessity still seems to be a central issue in the context of some of the claims made by the many supporters and participants of the HGP. They argue that the whole nature vs. nurture debate will be successfully brought to a close with the realisation that it is the former that dominates the way people develop and behave. As the writer of an article in Life remarked, far from a piece of putty, say biologists, my daughter is more like a computers motherboard, her basic personality hardwired into the infinitesimal squiggles of DNA (Colt, p. 40).

Anthropological research in the field of science studies has linked the kind of discourses with which many of the papers are concerned with here, to the lived experiences of individuals and groups. For example, Andrea Stockl (University of Cambridge) in her paper Embodying genetic disorder the case of SLE [Systematic Lupus Erythematosus] examines the social and cultural construction of biomedical knowledge of SLE. Its aetiology is currently unknown although genetics, sex hormones, viruses and stress are seen to play a crucial role. Stockl wishes to combine the observation of laboratory practice and the life-world of SLE, particularly howpeople make sense of the diagnosis and the disease in their everyday life, in relation to the body of biomedical knowledge through what she called illness narratives. SLE is now viewed as an example of an autoimmune disease, where the immune system turns against its own body, therefore Stockl is interested in the recent revival in exploring concepts of the self, especially in the work of Donna Haraway. Individuals with SLE, like many others, have set up user groups on the Internet where aetiology, current research, and new techniques is shared and discussed. Stockl suspects that they might be beginning to form their own discourse and identity, which is also happening with other groups of people with certain genetic disorders. These groups, currently the subject of research, are sites where forms of knowledge are generated outside the boundaries of academic or corporate science. The distinction and relationship between expert and lay knowledge, which has often been the focus of science studies research, is brought to the foreground, and the implications for future research is of great interest.

Probably the greatest area of controversy in the 1990s has been the conduct of genetics research in developing countries. This has mainly involved the Human Genome Diversity Project (HGDP) whose proponents wish to sample and preserve genes from the worlds populations, especially those on the verge of extinction. It has been consistently opposed by Indigenous Peoples Councils and non- governmental organisations. The term that often features now in their declarations and press releases is biocolonialism — the practice whereby the dominant culture in the world maintains and extends control over the biological resources of others (Whitt, 1998). It describes the growing commercial interest in these resources by universities, governments and industry often in partnership, leading, it is feared, to the continued exploitation of isolated communities with high incidences of particular diseases. The most notable example is probably Tristan da Cunha whose small population experiences a very high rate of asthma (Biggin, 1997). The other component of this biocolonialism might be seen as the way in which the proponents of the HGDP dont acknowledge the specific originary and historical inscriptions held by many of the populations whose genes they would like to sample.

Richard Tutton (Lancaster University), in his paper `Writing the human’, locates the HGDP in the broader context of western biology and the emergence of the textual and informational metaphor so fundamental to the discourses of the human genome. He shifts the argument from documenting the sequence of events in the controversy of the HGDP, to an analysis of its conceptual foundations, especially to the effect of its chosen sampling strategy on the discursive claims of its proponents. He argues that their desire is to create a universal humanity based on molecular genetics and Neo-Darwinian theory, in which physical differences (the basis for the old category of race) are supplanted by a common genetic heritage to unite all the worlds populations. However, he suggests that this universal humanity, which is bound up with the attempt to scientifically answer the origins of other cultures, is highly offensive to many indigenous peoples, and highlights the difficulties of a universal science dealing with situations of cultural relativism.

At the end of the meeting in April, it was decided to hold a second colloquium hosted by the Department of Science and Technology Studies at University College London in December, under the title of Postgraduate Forum for Genetics and Society (PFGS). The intention is to make this a biannual event so as to follow closely the work of participants as it progresses, and to make the forum open to as many postgraduates, on both MA and PhD programmes, as possible. The organisers would therefore like to hear from those involved in the public understanding of science, anthropology, cultural studies, sociology, philosophy, literary studies, and science and technology studies who will find this new forum to be very useful. We are especially interested in fostering pan-European links, and would like to attract researchers from different national traditions.

To join the PFGS electronic mailing list for details of our future meetings, please send a message to Richard Tutton at the email address below.

Notes

  1. We would like to thank the Department of Sociology for funding this event. We would also thank Justine Brooks, Dr Sarah Franklin, Dr Maureen McNeil, and Denise Wright for their valuable assistance.
  2. Other participants included Wan Ching Yee (University of the West of England), David Cumner, Katy Harkavy, and Annie James (all at Lancaster University).

References

Biggin, S. (1997) “Whose DNA is it, anyway?” Science, 278: 564-67.

Bodmer, W. and McKie, R. (1994) The Book of Man: The Quest to Discover our Genetic Heritage, Abacus, London.

Colt, G. H. (1998) “Were you born that way?” Life, April 1998: 38-51.

Franklin, S. (1995) “Science as culture, cultures of science,” Annual Review of Anthropology, 24: 163-84.

King, D. (1997) “How to control science: a case study,” GenEthics News, 19: 6-8.

Laurence, J. (1998) “Designer baby fears after 50 screened births,” The Independent, 7 May: 1.

Nelkin, D. and Lindee, S. M. (1995) The DNA Mystique: The Gene as Cultural Icon, W. H. Freeman, New York.

Rose, S. Lewontin, R. C. and Kamin, L. J. (1990) Not in our Genes: Biology, Ideology and Human Nature, Penguin Books, Harmondsworth.

The Royal Society (1985) The Public Understanding of Science, Report of an Ad Hoc Group, The Royal Society, London.

Whitt, L. A. (1998) “Biocolonialism and the commodification of knowledge,” Science as Culture, 7 (1): 33-67.

authors’ addresses: a.hedgecoe@ucl.ac.uk, r.tutton@lancaster.ac.uk

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