Colloquium Abstracts 2000

Colloquium 4: 26-27 June 2000

Sheffield Institute for Biotechnological Law and Ethics

This meeting was organised by Shaun Pattinson and Mark Taylor, and was hosted by the Sheffield Institute for Biotechnological Law and Ethics (SIBLE). 

Presentations were given by Claudia Downing, Sahra Gibbon, Iina Hellsten, Baerbel Mauss, Ainsley Newson, Carlos Novas, Peter Odell, Shaun Pattinson, Phil Roberts, Jnr, Harald Schmidt, Mark Taylor, and Richard Tutton.

Other participants included Alia Ahmed, Sally Amanuel, Jennifer Bostock, Oongah Corrigan, Filippa Corneliussen, Peter Coy, Jo Ford, Rachel Grellier, Georgina Haarhoff, Adam Hedgecoe, Jane Kaye, Nicola Lindsey, Sarah Parry, David Patton, Natasha Semmens, & Darren Shickle

 

 

Presentation Abstracts

Claudia Downing (Cambridge University)

Genetic Responsibility

Genetic information affects the ways in which people think about, and experience, their biological connections to others. It has been suggested that awareness of this information changes an independent concept of self into an ‘interdependent’ social one, heightening one’s awareness of genetic responsibilities towards others who may also be affected by this information (Kenen,1994). They include biological family members who share similar risks, future generations, and partners. Reproductive decision-making provides an appropriate context in which to study genetic connection and responsibility. Little was previously known about how people make reproductive decisions in relation to a life that might be “normal” until adulthood but then be affected by a late onset disorder. This paper reports on a grounded theory study undertaken of reproductive decision-making in families facing a late onset disorder, Huntington’s disease (HD). HD is a neuropsychiatric disorder for which there is currently no effective prevention or cure, which has serious implications for reproduction. As genetic testing had recently become available for HD it was hoped that this would provide an opportunity to learn more about how these developments are viewed and accommodated within reproductive decision-making.

Comparisons of aware and unaware decisions identified “awareness” of the risk for HD as the causal condition for the model grounded in this study. Awareness defined reproduction as problematic. A key aspect of the model was that it confirmed that HD presents two dimensions of reproductive risk: that which may be passed on to any children born, and that of not being able to sustain a parenting role. Awareness of these risks prompted certain elements of the situation to be redefined – such as the nature of the risks, themselves, fertility, and relationships. The form redefining took reflected modifying factors such as the values that people held, their concept of the future and their perception of social support. Redefining enabled people to tell a different story when subsequently accepting, modifying or avoiding one or both of these risks. Concerns about one value, responsibility, dominated their stories – identifying responsibility as the core concept for the model.

Case studies will be presented to convey the complexity underlying the theoretical model. These case studies convey the intricacies of changing individual experience, social contexts and technological advances in which reproductive decision-making is experienced within families facing HD. Case studies have been selected which reveal different facets of how responsibility was negotiated within families as genetic testing became available. The first will show how conceptions of what responsible decision-making entails changes over time within a family. The second will reveal how changing risk status impacts on how an individual perceives responsibility. The third will show how it becomes possible to reject testing and redefine accepting the risk as acting responsibly.

Sahra Gibbon (University College London)

Geneticisation in breast cancer

Based on fieldwork currently being carried out at a breast cancer family history clinic in central London hospital I will discuss some of the ways that genes, family history and genetic testing are used and discussed in clinical encounters and by women attending the clinic. I will show that there are practices of containment and boundary making at work here which foreground certain meanings and eclipse others suggesting that geneticisation in breast cancer is strategically deployed in specific and often diverse ways.

Iina Hellsten (Tampere University, Finland)

Metaphors Of Modern Biotechnology

Modern biotechnology is constantly discussed in terms of discovering the alphabetic of life, playing God and creating new Frankenstein’s monsters. These metaphors of modern biotechnology are based on views on science and technology in general. The basic narratives of hope and fear, from Prometheus and Frankenstein to modern versions of indefinite progress and the narratives of eugenics have influenced the public representations of biotechnology. These narratives reflect two opposing views. First, it is wrong to modify nature and thus gene technology is just a new and dangerous way of interfering with nature. Second, modern biotechnology is a beneficial tool for controlling nature. Both views have humans as outside of nature, either subjects to its whims or lording over it.

However, these narratives, and metaphors are also transformed when moving from discourse to another. The ambiguity of metaphors allows their use for opposing purposes. For instance, the metaphor of discovering the alphabetic of life evokes different images depending on the purpose of the user and the context of use. My aim is to discuss the continuity and transformation of the metaphors on modern biotechnology. The presentation is part of an ongoing project entitled “The Power of the Gene. Mediated science and its publics” (http://www.valt.helsinki.fi/staff/valiverr/gene/index.htm) and my Ph.D. study on metaphors of biodiversity and biotechnology in the media.

Baerbel Mauss (Humboldt University, Germany)

Materialisation of Bodies

My project , that I would like to discuss on the colloqium of the Postgraduate Forum on Genetics and Society, critically investigates the field of human gentics with the aim to demonstrate its power to construct intelligible bodies. On the one hand I try to show that human genetics play a relevant role in the sex-gender-discourse. I claim that human genetics stabilize heteronormativity and the norm of the two-sex-system. On the other hand I try to show that human genetics, through the citation of the norm of ‘gene-health’ fix the boundaries of our image of a healthy human being in the biomedical discourse on disability.

Along selected publications from the field of human genetics I discuss the concepts of a “gendered” body and of “gene-abled” body, and show where and how those concepts intersect.

Ainsley Newson (Melbourne University, Australia; Oxford University)

Behavioural Genetics: a new informational structure

In addition to the identification of genes for complex human diseases, numerous research projects are now being undertaken in order to identify and characterise genes involved in human behaviours such as intelligence, homosexuality and criminality. Consider the following scenario: – The company GenInfo Solutions Inc. yesterday announced the availability of its new DNA analysis software, Personality Profiler, which is able to give accurate predictions of human characteristics from DNA chip information together with the provision of some limited information about environmental variables. The CEO of the company has claimed that the software will be able to “Offer genetic prediction for virtually any trait in any place in any person”.

Obviously this research raises many issues. However, two initial questions arise – Is this information significantly different from other types of information? – and – How should society be interpreting complex ‘non-medical’ genetic information? The answers to both of these questions will have far-reaching implications for the ethical debate about behavioural genetic information. This paper will make the claim that behavioural genetic information is of a morally different kind than ‘medical’ genetic information, or other ‘non-genetic’ information about behaviour. It will then claim, however, that genetic information should not be privileged over other information about behaviour, as this would lead to the geneticization of human behaviour. The paper will conclude by using the above treatment of complex ‘non-medical’ genetic information to articulate ethically relevant questions that arise from the research.

Carlos Novas (University of London)

Living with ‘risky’ genes: the Internet, ethics and the care of the self

Persons who are at genetic risk, who suffer from a genetic illness, and those who care for these persons are increasingly using the Internet as a tool to gain knowledge about their illness, to guide others to useful sites of information, and as a forum to provide advice and support to one another. Within the growing body of literature which examines the use of the Internet by ‘health consumers’ it is often suggested that these

developments are empowering patients by giving them access to medical knowledge. Rather than seeing the Internet as site of empowerment, this paper argues that the Internet constitutes a medium which facilitates the writing of life and attributes of personhood in the language of biochemistry and molecular genetics. This enfolding of medical authority and the experiences of others for the purposes of the care of the self that is increasingly taking place over the Internet is constitutive of the very ways in which humans come to understand and act upon themselves. The paper will attempt to outline the ways in which genetic and biomedical discourses are productive of the person ‘genetically at-risk’ and have become central to the ethical problematisation of how to live one’s life. Through the analysis of the ‘sites’ where those persons who are at-risk or care for those suffering from Huntington’s disease come for support on the Internet and the websites they have created to guide others who share a similar fate, I suggest that it is promoting an ethic which is in alignment with neoliberal forms of governmental reason; that is to say, the ethical valorisation of being active, responsible, entrepreneurial, prudent, and knowledgeable in relation to living a life with risky genes.

Shaun Pattinson (Sheffield Institute of Biotechnological Law and Ethics)

Regulating Germ-Line Gene Therapy To Avoid Sliding Down The Slippery Slope

Many arguments can be made for or against various regulatory approaches towards germ-line gene therapy and its associated research. A popular conclusion is that it ought to be prohibited, and this is commonly defended by use of a slippery slope argument. This paper will begin by outlining the regulatory approaches adopted towards germ-line gene therapy in EU countries, demonstrating the popularity of the restrictive approach. The slippery slope argument will then be examined. A number of variants of the slippery slope argument will be distinguished, highlighting the conceptually different claims made by each. Finally, examples of slippery slope arguments often invoked to support the prohibition of germ-line gene therapy will be examined with regard to the conditions that each must satisfy to form a theoretically sound argument. I will argue that these conditions are rarely given sufficient consideration.

For the purposes of this paper, “germ-line gene therapy” is defined as the deliberate genetic modification of germ cells (sperm or oocytes), their precursors, or the cells of early embryos where the germ-line has yet to be segregated.

Phil Roberts, Jnr.

Hume’s Psychodynamics: Why We Turned Out Like Captain Kirk Instead of Mr. Spock

Rather than treating the “meme” (Dawkins, 1976) as a literal unit of selection, I believe the term should simply serve as a marker for delineating the explanatory gap between the “ruthless selfishness” (with “special” and “limited” exceptions) predicted by Hamilton’s kin calculus (1964) and the benevolent selfishness we often find in ourselves (self endangering Greenpeacers, Albert Schweitzer, etc.). And, in this sense at least, it could be argued that memetics is probably as old as psychology itself.

Thanks to his momentous discovery of the “qualities by which the mind is convey’d from one idea to another”, the venerable David Hume has managed to decipher some of the logic of how values behave. With the help of this logic (and a few diagrams), I believe it is possible to account for the sustained presence of non-self-serving concern for others. In this scenario, the cumulative effect of Hume’s laws operating over millennia of cultural evolution has become sufficient to overwhelm nature’s incessant culling of the valuatively unfit. Although less than optimal, the resulting valuative profile has been TOLERATED by natural selection as an acceptable premium for reaping the considerable rewards that attend a rational species (i.e., they survive good). Paradoxically, this implies that we have become LESS DETERMINED (conatively/valuatively) by natural selection as a result of natural selection.

Harald Schmidt (Oxford University)

Drawing the Line: Which Human Traits Must Never Be Altered by Genetic Engineering? – Persons, the Good Life and ‘Procreative Autonomy’

In this paper I am concerned with non-medical genetic alterations in the germ- or somatic cell line of humans. In particular, I focus on alterations that are carried out to determine specific traits that deem desirable to the respective parents. I present and reject John Harris’ adoption of Ronald Dworkin’s concept of ‘Procreative Autonomy’ (Harris 1998), that, applied in this context, allows for highly problematic cases in those instances where the determined traits pre-select a certain way of life that eventually is not appreciated by the thus created person. I show that Harris’ transfer of the concept that was originally forwarded in the context of the abortion debate (Dworkin 1993) is in principle inadmissible, and that if it is applied nonetheless it must be rejected in many cases as it is directly self defeating where autonomy is proclaimed for violating another’s – i.e. the created person’s – autonomy.

I do not deny that there may well be many, mostly medical, cases where genetic alterations can be desirable or where there might even be a duty to alter human traits, technical feasibility granted. Nonetheless, for most of this paper I try to look only at which alterations should not be undertaken with respect to the interests of the affected individual. The result that I present is not a list of ‘forbidden traits’ but a formal device that can be used to check alterations in question. The (Kantian) ‘Argument from Autonomy’ and the (Existentialist) ‘Argument from Assuming Life’ yield the conclusion that those alterations should not be undertaken that impose what I call preset non random constraint on a person’s life.

The reasons for this claim are, (a) that it is impossible to obtain consent to the respective alterations from the finally affected person, (b) that it must in principle be underdetermined whether the respective alterations will fit in the sort of conception of a good life that the affected person will eventually choose to lead, (c) that choosing autonomously what sort of life one wants to lead on a neutral basis is however what genuinely constitutes leading the life of a person, (d) that if one’s liberty to do so is infringed it is radically more difficult to accept one’s life, to feel responsible for one’s actions and to be grateful for one’s existence towards one’s parents, (e) that it is doubtful whether parents can live with, and take on the responsibility resulting from their imposing preset non random constraints.

Thus it seems that in respect to those traits that pre-determine a special scope of living a good life, we can live best with the fuzziness provided by the various randomisations in the conventional fertilisation process.

Mark Taylor (Sheffield Institute of Biotechnological Law and Ethics)

Justification of Preference Expression Founded Upon Probability: When Is It Okay for People to Discriminate Because of What Might Happen?

In this paper I wish to spend some short time looking at the phenomenon of genetic discrimination. Discussing some of the reasons commonly offered for its legal proscription, and suggesting that there may be a confusion within the literature between condemning genetic discrimination because it is ethically unfair, and doing so because it is scientifically unfounded. While I acknowledge that there will often be an overlap between the two, I think recognising the distinction is important for two main reasons. First I will suggest that demonstrating a preference to have been expressed on the basis of information that is scientifically unsound, is neither a necessary nor a sufficient reason for making such preference expression (i.e. discrimination) illegal. Secondly, I suggest that the converse of this is also true, i.e. that demonstrating sound scientific reasons for a particular preference in a given situation is neither a necessary nor a sufficient reason for legally permitting the discrimination. Essentially I wish to demonstrate, how the ‘fairness’ of a test is calculated through assessment of more than just scientific reliability, and how this is in fact the only reliable measure of whether a particular instance of discrimination ought to be outlawed.

Richard Tutton (Lancaster University)

Gifts and Genes

Since the proposal for the UK Population Biomedical Collection was announced, the concept of the gift has been re-introduced into the contemporary debate on the collection and storage of biological samples, with particular reference to the question of how members of the public conceptualise voluntary donations made to medical research. I explore some of the different ways in which gift has been understood, drawing on the work of Richard Titmuss who argued that the voluntary blood donor system in Britain represented a particular form of gift relationship, and on earlier ethnographic research on gift exchange by the French social anthropologist Marcel Mauss. Discussing some of the criticisms made of Titmuss, I note how on a number of points his understanding of gift differs significantly from this previous research. However, I highlight that for Titmuss, as for Mauss, the most important aspect of the gift lies in the fact that it is a force for sociality. I explore the meaning of this sociality before turning to an analysis of interview data from my fieldwork in Orkney, the site of a collection of genetic samples in 1994. I examine the purchase of these differing conceptualisations of the gift, derived from the work of Titmuss and Mauss, to illuminate issues associated with the public participation in this collection.