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Report on the Fourth Colloquium

Postgraduate Forum on Genetics and Society

Report on the Fourth Colloquium

Ainsley Newson1

Ethical, legal and social questions raised by the ‘new genetics’ are now amply represented in a diverse range of postgraduate research. Recently, the fourth Postgraduate Forum on Genetics and Society (PFGS) enabled many of these students to meet. Held between June 26 – 27, 2000 and hosted by The University of Sheffield with the generous support of the Wellcome Trust, the timely 4thPFGS coincided with the announcement of the completion of the draft human genome sequence.

The PFGS provides an opportunity for postgraduate students in disciplines such as philosophy, sociology, history, law, cultural studies, and anthropology to present their work in an informal and supportive environment. The forum provided the opportunity for an extremely interesting cross-disciplinary discourse, and four distinct, yet overlapping themes concerning issues in genetics emerged as the conference proceeded:

  1. The nature and role of biological and genetic information;
  2. Deliberations about how regulatory responses should be made to genetics;
  3. The relationship between genetic information and decision-making; and
  4. The cultural context of genetics.

It is within these themes that the papers of this forum will be briefly discussed.

Prior to engaging in debate about genetic technology, it is important to ensure that the nature of the information under consideration is being conceptualised in as clear a way as possible. Two presentations at the colloquium addressed these issues. Phil Roberts Jr reconsidered Dawkins’ ‘memes’, and argued that rather than treating them as a unit of selection, the term instead should simply be understood as that which negotiates the gap between the ruthless selfishness of evolution and the benevolent selfishness that characterises human cultures.

Ainsley Newson addressed questions concerning how behavioural genetic information ought to be perceived in order to ensure appropriate ethical debate over finding ‘genes for’ behaviour. She claimed that behavioural genetic information is special when compared to both medical genetic information and other measures of behaviour. She then claimed that despite this special nature of behavioural genetic information, it should not be privileged over other types of information about behaviour, and concluded by articulating several ethical questions that should be addressed.

Enabling the development of workable regulatory instruments is vital to ensure a balance between the protection of interests and the facilitation of the development of beneficial technologies. In a presentation that combined a legal and ethical approach, Shaun Pattinson examined the nature and validity of Slippery Slope arguments as a justification for banning germ-line gene therapy. He argued that in order for slippery slopes to be used as an effective tool, both the kind of slope and evidence for its ‘slipperiness’ should be considered. Thus, the consensus regulatory response to germ-line gene therapy is not as stably supported by the slippery slope argument as is commonly assumed.

Mark J. Taylor considered the concept of genetic discrimination, and when it may be justifiable. He claimed that a conflation of the claims made in ethical and scientific discourse has had the effect of complicating this debate, and that these two discourses should be separated. He supported this with the claim that science alone cannot and should not be used as the sole determinant of legislative direction. In actuality, legislators should look towards other factors such as ethical discourse to determine whether discrimination is ever justifiable.

Peter J. Odell discussed an extremely relevant aspect of regulation with a presentation summarising and contrasting patent regulations between the European Union and the United States. The information presented was extremely helpful as it accurately demonstrated the criteria for patenting biological ‘inventions’, and clarified numerous questions of forum delegates.

Genetic information alters how we experience our biological connections to others. With this comes the ability to make new decisions, and to accept responsibility for these. Claudia Downing illustrated the intricate and context-dependant nature of genetic decision-making. Her work concerning Huntington’s Disease has shown that responsibility and risk are the key factors which dominate decision-making, but that these are felt to differing degrees by different families, to differing degrees within families, and that these feelings can change over time.

An extremely important decision which parents may face in light of genetic research is the potential to influence traits that their children may have. Harald Schmidt from The University of Oxford addressed a particular ethical objection to making such deliberate decisions. Focussing on the interests of the person born, he claimed that if there is a risk that the person born would not appreciate the intervention, then it becomes problematic. He supported this assertion by claiming that we have no way of determining what their conception of the good life would be.

A final (but no less important) theme that emerged incorporated several ideas concerning the cultural context of genetics.

Metaphors are a very powerful tool with which to convey imagery and influence how people think about genetics. Iina Hellsten presented examples of several metaphors and discussed how they are generally used to influence public opinion. She also drew attention to the ambiguity of metaphors, their fluid nature, such that their meaning alters dependant upon the context in which the metaphor is used.

The Internet is a medium that is increasingly being consulted by many people touched by genetic disease to both gain knowledge and obtain advice and support. Carlos Novas presented his study theorising the role of the Internet in forming conceptions of genetic risk and genetic disease. His paper utilised the context of Huntington’s Disease to demonstrate that rather than simply empower patients, the Internet is also having the effect of altering the conception of personhood to one defined by genetics and biochemistry.

In addition to the importance of knowledge concerning how the public is presented with genetic information is an understanding of how genetic concepts manifest in clinical encounters. Sahra Gibbon conveyed her results from anthropological fieldwork in a breast cancer family history clinic. Focussing on the role of a family history in clinical consultation, she illustrated the complex workings of power and agency in the geneticisation of breast cancer genetics. Particularly, she showed that the way that routine discussion and representation of family histories helps to validate a predictive approach in cancer genetics.

How do people who participate in genetic research conceptualise their contributions? Richard Tutton qualitatively examined the concept of gift within the context of participation in a project to trace the genetic origins of a particular population. In comparing the concept of ‘gift’ in genetic research with ‘gift’ in blood donation, he identified differences in both the concept of the gift and the target of the donation. Specifically, samples being donated for genetic research are conceived of as part of a reciprocal exchange between the subject and researcher in addition to being an altruistic act.

Baerbel Mauss is undertaking research critically examining how genetics is affecting social institutions. Her presentation outlined the power of human genetics to construct ‘intelligible bodies’ – that science is a cultural practice. Using Judith Butler’s notions of materialization and performativity she addressed how genetics, as a narrative of ‘normality’ and ‘deviation’ can serve to stabilize sexual differences..

Overall, the colloquium challenged participants to consider the role and significance of their discipline, and how particular research approaches can combine to complement each other to formulate appropriate actions for future conduct. In a research climate currently dominated by ethical theory, it was extremely refreshing for all to consider bioethics as a broader field that will greatly benefit from the contributions of empirical work and cross-disciplinary discussions.

This report originally appeared in the Newsletter of the International Association of Bioethics.

1 PhD Student: Ethox, The University of Oxford, and Ethics Unit, The Murdoch Childrens Research Institute

Republished from http://www.nottingham.ac.uk/sociology/genetics/pfgs/pgfsreport_4.htm (now defunct)
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