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Subject: (no subject) From: mute@easynet.co.UK (mute) Date: 23 Aug 1997 19:07:27 +0200 * * * * * Interview with John Gillott of the Genetic Interest Group by Josephine Berry. The Genetic Interest Group is a group that supports and promotes the rights of patients suffering from genetic diseases and genetically related disabilities. They have sucessfully lobbied on issues such as the the legalisation of gene patenting - a law recently passed by the European Parliament.Josephine Berry interviewed him on GIG's work and the ethics involved in their agenda. J.B.: > - Firstly, I'd like to ask you about GIG's working methods and in > specific who the main recipients of its papers and reports are and what > sorts of political ties it has? ------------------- J.G.: GIG has no political ties. It is an alliance representing individuals and families affected by genetic disorders. An individual member would typically be a group representing people affected by a specific genetic condition, such as Huntington's disease or muscular dystrophy. GIG has a management committee which is made up of individuals from the member groups. It is elected from among the members on a regular basis. The papers GIG produces are distributed widely, primarily to politicians and policy makers in different fields. We are also interested in what is now called the 'public understanding of science' and we seek to disseminate our views accordingly. ------------------------- J.B.: > - Would you consider there to be any parties amongst its sponsors, apart > from individual sufferes, who might directly benefit from the unimpeded > development of genetic research and biomedical activty. ------------------------ J.G.: 'Unimpeded' might need to be qualified. Most supporters of genetic research place some sort of restriction on what should be done with genetic science. Though clearly, GIG and others take a positive view of advances in the basic science of genetics and look forward to many of the applications it makes possible. If by sponsors you mean funders, then yes quite possibly. GIG receives money from a range of sources, including: our members, the biotechnology and pharmaceutical industry, government; charitable foundations. ------------------------------ J.B.: > - Could you define exactly what is meant by the term 'genetic disease'? J.G.: We might need to break that down into 'genetic' and 'disease'. Genetic in so far as it is understood that a genetic mutation is the direct cause of or an increased risk-factor for a diseased state. 'Disease' as in illness, which might not have been understood to have a genetic basis in the past, eg cancer. Leaving aside the debate about the genetic basis for such characteristics for the moment, GIG does not believe behavioral characteristics such as homosexuality to be diseases. ----------------------------------- J.B.: > - I was very interested in the reference you made, in your paper 'A > briefing paper on ante-natal and pre-implantation genetic diagnosis, > embryo research and contemporary abortion issues' to the "general loss > of confidence in the future and in science...". Could you talk a little > bit about this sea change in attitudes and where you stand in relation > to this description. Also, is this a culturally specific attitude? --------------------------- J.G.: This is a very broad area and I have a train to catch! It is also a contentious question in so far as clearly GIG is making a value judgement about contemporary attitudes. Others might say that society has not lost confidence in the future and in science but has rather rightly adopted a different perspective on these matters. Perhaps the simplest thing to do is to leave it to the reader to form their own opinion on the point we make. --------------------------------- J.B.: > - In the above mentioned report, you talk about the 'opportunistic' > appropriation by old school pro-lifers (who you describe as having lost > the 'basic argument' on anti-abortion) of the criticism of eugenicist > thinking levelled by dissability groups against selective termination of > foetuses and pre-implantation diagnosis. Firstly, It seems very in > keeping with their non-interventionist approach to child birth and for > that reason hardly opportunistic. Secondly, and perhaps this goes deeper > into the essence of your position, within it is the implication that > actual sufferers or people with disabilities are the only groups who can > legitimately defend the importance of/and or right to life of the > 'unhealthy'. Is it not also possible for 'the healthy' to legitimately > voice their concern about levels of medical intervention and control in > their own society? J.G.: On the first point: yes it is quite consistent for the pro-life movement to object to medical intervention into conception and birth. We had in mind a different point. Some disability activists argue that selective termination is a form of discrimination against people with disabilities and actually leads to discrimination against those living with a condition. The opportunism we refered to was the use of these specific arguments by the anti-abortion lobby as they have lost the basic argument against abortion in general or against the use of new technologies in the field of conception and termination in general. On the second point, you are of course right: there is no monopoly of truth just because you have experience of a genetic condition. But our point is that in our opinion there is no problem about the level of medical intervention and control. Intervention and control could be understood as coercion. Our point is that new technologies are not coercive. Rather individuals with experience of genetic conditions in families commonly request access to new technologies. ------------------------------------ J.B.: > - I was interested to read how conservatives and liberals have united in > their opposition to pre-implantation and ante-natal interventions. What > do you consider to be the common thinking or premises that lie between > these groups - how does this span their otherwise broad separation? J.G.: Again, a big question! Very briefly, I would argue that old divisions between conservatives and liberals are no longer very meaningful, and that both have become more conservative (with a small c). Certainly, what unites people of many political persuasions is a suspicion of forms of science and scientific expertise linked to interventions in nature and society. A big influence on this is environmental politics, broadly understood, and also the themes collected under the heading 'Risk Society' which include crtitiques of instrumental thinking and action of which modern genetics is seen to be an example. Another aspect of the demise of old-style liberalism (small l) is that individual choice is commonly problematised today. So, whereas in the past the right of the individual to make their own reproductive choices was supported by many, this is now qualified without being opposed outright. ------------------------- J.B.: > > - Would you accept that definitions of sickness or disability are > culturally informed? In other words, can these conditions be described > as a priori undesirable and is society measurably better off as a whole > without them? ---------------------- J.G.: Clearly, definitions of disability and sickness are culturally informed. Clearly, also, the organisation of society has a big impact on people with genetic conditions. However, this does not mean that disability and sickness are primarily culturally informed. Genetic disorders and sickness are organic conditions which most people who suffer from them would rather not have, which is why they support genetic research. ----------------------------------- J.B.: > - Do you see a discrepancy between the loss of the basic fight on > anti-abortion and growing worries over embryonic discrimination? ------------------------- J.G.: No, obviously. It is our view that worries over embryonic discrimination are informed by a different set of ideas than those that underpinned the classic opoosition to abortion per se (see above and the GIG briefing paper). ---------------------------------- J.B.: > - GIG has stated: "GIG firmly believes that individuals must be free to > make their own decisions because they are the ones who will have to live > with the consequences of those decisions". How does this tie into the > basic principle of any ethics i.e. that it is concensual and aimed at > establishing a situation of majority well being? Not wishing to > over-dramatise, but a good example of this is the criminal who must also > live with the consequences of their actions. This is no reason to grant > them freedom of action. --------------------------- J.G.: The way you pose it and the analogy you draw carries with it certain assumptions about what the 'majority' point of view might be, and the morality of the choice to terminate. GIG is not arguing for the freedom to do terrible things. GIG is making the point that there is no harm to society in the decision to terminate (or not to terminate) on the grounds of fetal abnormality, and that the real harm would be done to the individual woman and family if their ability to make their own choices in an area that directly affects their own lives was restricted. There is no clash here between individual choice and majority well-being. ----------------------------- J.B.: > - This leads directly into my final question, which is: do you foresee > any long-term detrimental effects for a society which pre-selects the > children being born in it? ------------------------------ J.G.: I don't agree with the way you pose it: 'Society' is not selecting; individuals are. Of course, society makes certain choices possible. And as we point out, the choice most people want to be able to make is to terminate a pregnancy that is affected by a genetic disorder. Is this is a problem? No - it is a perfectly understandable and reasonable choice. So long as coercion is avoided, the reduction of suffering made possible by advances in genetic science is something GIG welcomes. ------------------------------