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Subject: Pre-implantation genetic diagnosis, embryo research and contemporary abortion issues - John Gillott From: pauline@metamute.COM (pauline) Date: 26 Aug 1997 11:52:58 +0200 * * * * * (for interview with John Gillot of GIG and Josephine Berry from mute: see newsgroup entry with 'no subject' header.) 20 December 1996 A briefing paper on ante-natal and pre-implantation genetic diagnosis, embryo research and contemporary abortion issues by John Gillot <John@jo-jo.demon.co.uk> on behalf of the Genetic Interest Group Throughout 1996, the second half of it in particular, a wide range of issues sparked considerable debate about ante-natal and pre-implantation genetic diagnosis, embryo research and abortion. This briefing paper (1) summarises the different discussions; (2) examines the connections between the various issues that have been raised, and the motivations of those involved; and (3) outlines the Genetic Interest Group's approach to the issues. (1) Summary of issues Prominent anti-abortionists raised concerns about genetic diagnosis in 1996. David Alton MP intervened on the issue during the House of Commons debate on human genetics and the work of the Commons Science and Technology Committee in July 1996, painting a fearful picture of the Brave New World that awaits us[1]. David Alton also expressed concerns about the membership of the new Human Genetics Advisory Commission after it was announced in November - he feels it is dominated by supporters of genetic science. He has also asked for a breakdown of any cross-membership between the Commission and the British Eugenics Society and the Galton Institute. However, in 1996, it was pre-implantation genetic diagnosis in particular rather than genetic diagnosis in general that aroused the most mainstream interest and concern. Lord Winston has extended his work at London's Hammersmith Hospital to include pre-implantation diagnosis for late-onset cancer. He argues: 'if a child has a 90 per cent probability of developing the disease, because of the family history, it would be good to avoid it. There is a strong case for screening these people.' Others are not so sure. The Human Fertilization and Embryology Authority has conducted a review of the scope of pre-implantation diagnosis. Its conclusions had not been announced when this briefing was written, but Ruth Deech, chair of the HFEA, has expressed concern about doctors creating 'babies to order'. Not surprisingly, both anti-abortionists and disability rights activists have condemned Winston's work. Some of the latter argue that both pre-implantation and ante-natal genetic diagnosis amount to a programme of eugenics. Within Europe, a report prepared by Seppo Pelttari, on the Council of Europe's draft Convention on Bioethics, called for an effective end to embryo research. His proposal, which echoed current German law, was that only as many fertilised eggs could ever be created as were to be implanted in a woman during IVF. It was debated by the European Parliament. Perhaps more by luck than by design, the report was rejected. The full Bioethics Convention has now been adopted by the Council of Europe - with Germany, Poland and Belgium abstaining. It allows 'spare' embryos to be used for research where this is consistent with national law (it is in Britain), but it forbids the creation of human embryos for research (something that is legal in Britain)[2].Also in 1996, research on the use of embryonic material in treatments for neurological conditions and retinitis pigmentosa, as well as on fetal treatments for a range of genetic conditions, brought forth opposition from anti-abortionists. Ethicists are also uneasy: The Reverend Dr John Polkinghorne argued[3] that the use of embryos in research to treat conditions such as Huntington's disease might be problematic as it requires a particular method of abortion - one that leaves the fetal brain intact - and this fact might breach the Chinese Wall[4] his committee on the uses of fetal tissue in research sought to establish between the reasons for abortion and the future use of aborted material in medicine. 'Events' in 1996 related to abortion and fertility treatment included: the thawing of 3,300 frozen embryos under the terms of the Human Fertilization and Embryology Act; the reduction of a twin pregnancy to a singleton; Mandy Allwood's attempt to take eight fetuses to term; the refusal of fertility treatment to a woman who had previously given up three babies for adoption; a discussion in the medical and popular press of fetal pain, plus a discussion of the matter by the Rawlinson Commission; legislative attempts to outlaw 'partial-birth abortions' (following on- going attempts to ban the procedure in the United States); legislative attempts to outlaw termination for Down's syndrome (Lord Braine's Private Members Bill); and, as background to the previous 'event', what might be called 'noises off' about the need to explicitly specify the conditions for which post 24-week abortion is and is not allowed. Anti-abortionists also tried to alter the law on abortion as a whole; Elizabeth Peacock MP attempted to get the All-Party Commons Select Committee on Health to examine the matter, and plans have been announced for 50 plus anti-abortionists to run for Parliament at the 1997 general election under the banner of the 'Pro Life Alliance'. Finally, litigation became an issue of increasing importance in 1996. In one case a woman sued Northwick Park Hospital for not warning her of her risk of having a child with spina bifida. More generally, issues such as whether or not there should be a list of conditions for which post 24- week termination is allowed now involve legal considerations. (2) Behind the issues and events Clearly, arguments about the rights and wrongs of abortion are not new. But what is novel is the level of public and professional concern and discussion about questions arising from the interaction of abortion politics, genetics, reproductive technologies and embryo research. To schematically summarise the issues before discussing them at greater length, there are three important elements whose interaction shapes contemporary discussion of the issues. A. Background influences Within society as a whole, there exist concerns and doubts about genetic screening and testing. A general loss of confidence in the future and in science is one factor. More specific aspects and issues which are important include worries about genetic manipulation and concerns about discrimination against disabled people. A mood shift on the issue of abortion and fertility treatments is evident in some liberal circles: Formerly very much pro-choice, many liberals are now less certain - critiques of A fairly nebulous, but nevertheless evident, new dimension to worries about the treatment of fetuses arises not from the traditional focus on fetal rights but from a sympathy for the powerless - it is interesting to note that many young people who are concerned about animal suffering are also uneasy about abortion, abortion on the grounds of fetal abnormality in particular. The question of fetal pain is also important here.[6] B.Majority opinion is still pro-choice on abortion However, notwithstanding the above points, anti-abortionists have lost the basic argument about abortion as far as public and professional opinion is concerned, and it seems unlikely, though not impossible, that they will succeed in getting the Government to re-open the issue in the near future. In response to this, they have shifted their focus of activity and propaganda. While many of them no doubt sincerely hold concerns about some of the issues arising from genetic science raised in (A) above, it is also the case that in response to losing the basic argument, anti- abortionists now seek to instrumentally use the issues listed in (A) to cast doubt on abortion. Over the course of 1996, anti-abortionists were particularly active in relation to fetal pain. The recent attention paid to genetic testing by David Alton MP suggests that this might be the next issue to attract their attention. C. Opposition to abortion is not the only reason to question genetic diagnosis Two distinct agendas are evident in opposition to pre-implantation and ante-natal genetic diagnosis: one is the traditional anti-abortionist concern with the status of the fetus; the other is a disability rights perspective which opposes genetic diagnosis on the grounds that it de-values the lives of the disabled. In practice the fact that there are two agendas at work is not always evident as some people are pursuing both, and, as mentioned above, traditional anti-abortionists are opportunistically latching onto the disability rights agenda. However, it is important to keep in mind the distinction because it matters in a number of areas; most importantly in relation to pre- implantation diagnosis. 2.1 Genetic diagnosis, IVF and abortion issues today To expand on the points raised in A-C with a few examples. As far as abortion as such is concerned, surveys indicate growing support for a woman's right to choose. In 1995 a Mori poll showed that two thirds of British voters believe that abortion should be available on request. A poll for the Mail on Sunday in 1996 found that 81% support a woman's right to choose. At one level, traditional anti-abortionists have thrown in the towel: Spectator columnist Paul Johnson might have argued that 'It is not true that there are no good causes - ending abortion is one' (17 August 1996); but the political columnist of the same journal is aware that 'history and politics' are against the pro-lifers, and that abortion is a 'law that won't die' (Sunday Times, 11 August 1996). But at another level, anti-abortionists give every impression of believing that things are going their way[7].The reason for this apparent discrepancy is that while anti-abortionists have lost the basic argument, they are able to play on widespread concerns about abortion, concerns which are especially strong when the issue is linked to genetic diagnosis and reproductive technologies. In the above-mentioned House of Commons debate on human genetics, David Alton MP welcomed the shift away from a focus on individual choice among sections of the liberal press (a fact strikingly confirmed not long after the debate when Hugo Young of The Guardian called for the outright rejection of IVF [8]). He further welcomed the growing unease with genetic technology. The criticisms of genetic testing and IVF procedures by a traditional conservative such as David Alton MP, Elizabeth Peacock MP and Dame Jill Knight are familiar. Less familiar perhaps, but certainly quite typical today, are criticisms made by liberal commentators, or feminist and environmentalist writers. Significantly, it is the fact that it is not just traditional conservatives who are raising doubts about choice, IVF and genetic diagnosis that adds weight to the criticisms made. A couple of examples will illustrate broad shifts in the direction from which arguments are coming. The feminist Hilary Rose and the sociologist Ulrich Beck, to take two well-known writers, question parental choice in relation to pre-natal diagnosis. They argue that the choice is manufactured by the technology, and that parents have become de-facto practising eugenicists. Rose argues that 'when medical interventions are particularly heroic, as with infertility treatments, foetal surgery and embryo genetic screening, women can find themselves having "chosen", yet feeling that it was not "this" that they wanted.' And these 'choices', she argues, are eugenic in that they are premised on the goal of marginalising disabled people: 'the underlying message is "screen, abort or fix". For this discourse, both the rights of disabled people and the complexity of decision are undervalued. The old and powerful mechanism of devaluing the victims and blaming mothers has been activated, and can run and run.'[9] According to Beck, we live in a barbaric 'Eugenic Age'. He equates the avoidance or elimination of genetic disease with the eugenic removal of people with genetic diseases as practised by the Nazis. His argument is that society hasn't woken up to this because contemporary barbarism 'does not appear on the political stage, clothed in the familiar garb of brutality. It gains access through the clinics, laboratories and factories of the new biochemical industries. Its victory parade does not begin with street brawls, the persecution of minorities or people's assemblies, the dissolution of parliaments and the abolition of constitutions. This time it steps onto the stage of world history dressed in white coats, of self-confident research, the good intentions of doctors and the desire of parents to do their "best" for their children.[10] A woman's right to choose in relation to abortion is still supported by the new critics of genetic diagnosis and reproductive technologies. However, what the quotes from Rose and Beck illustrate is that a distinct concern for the rights of disabled people is a powerful influence on attitudes toward particular kinds of abortion independent of traditional conservative attitudes toward abortion per se. Principally, while contemporary attitudes include respect for the status of the embryo, they also weave in worries about the rights of disabled people and the related concern that modern genetics is creating a society in which people are intolerant of anything less than perfection. Taking into account the new influences in the discussion, it is likely that future discussions will focus less on the rights and wrongs of abortion as such than on whether restrictions ought to be placed on the conditions for which post 24-week abortion can be performed and the conditions for which pre-implantation and ante-natal genetic diagnosis ought to me made available. Indeed, as evidenced by the widespread concern expressed about Robert Winston's work in this area, there is already evidence that this is the set of issues that will dominate the future debate. [11]If the experience of other countries is anything to go by, these issues could come before Parliament soon: at the end of 1995, the Dutch Parliament began a discussion after there was an outcry over termination on account of a positive test for retinitis pigmentosa. 3. The approach of the Genetic Interest Group Subject to the constraints of existing law, GIG believes that for medical conditions, without restriction, pre-implantation and ante-natal genetic diagnosis should be available to those who want to make use of them. GIG also supports research on embryos and research on treatments for diseases using embryonic material. Finally, GIG supports a woman's right to choose whether or not to terminate a pregnancy. 3.1 Pre-implantation and ante-natal genetic diagnosis GIG does not believe that sanctioning termination for abnormality leads to discrimination against disabled people. The experience of GIG members groups is that parents who use genetic diagnosis to avoid the birth of a child with a genetic condition after having a first child with the condition love the first child no less as a result of the choices they make. In the case of serious genetic conditions, this kind of choice is often motivated by a desire to be able to provide the time and resources the first child needs. In his book The Lives to Come, Philip Kitcher argues, persuasively, that what holds at the level of parental attitudes can also hold at a societal level. He gives the example of the way in which the Greek Orthodox Church has a positive programme to reduce the birth incidence of thalassaemia; while at the same time care is provided by society for those living with the condition.[12] 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. In relation to selective termination for fetal abnormality this point is especially important. The choices that are made are not 'constructed' by some grand 'eugenic' discourse - an insulting idea - rather, they are based on the real experience of living with a family history of a genetic disorder. If any 'list' were drawn up of conditions for which ante-natal testing and termination on the grounds of fetal abnormality was or was not allowed, people would be denied the opportunity to make the difficult choices they face. Such a denial of choice would be discriminatory, and if, in particular, women were denied the opportunity to test ante-natally for certain conditions, it might force some to have abortions who otherwise would not. Accordingly, GIG opposes any attempt to define a 'list'. In relation to pre-implantation diagnosis, the issues are more straightforward: if it is a matter of implanting three fertilised eggs out of a greater number, it is common sense to implant those free of known genetic conditions. Most people would want to make that choice, and when it is possible to maximise the chances of a healthy child it is perverse not to do so. There is no 'slippery slope' because there are no difficult cases: it is good to avoid any and all disease, and that includes predisposition to disease in later life. Accordingly, GIG opposes any and all attempts to restrict the range of medical conditions for which pre-implantation diagnosis can be performed. Of course, PID is not an easy procedure, and as such it is highly unlikely that women will start demanding it for what the critics of the procedure call 'trivial' reasons. Some supporters of disability rights have objected to PID because of the value judgement they believe it makes about people born with a genetic condition. Certainly, there is no denying the judgement which is made explicit by PID that it is better to be free from known genetic conditions than to have one. It is also the case that what is explicit in PID is implicit in ante-natal testing: there is the judgement that testing gives families the option of avoiding having a child with a genetic condition. Of course, things are much more complicated at this stage than at the earlier stage. For one thing the law accords greater status to the fetus. For another parents have a different relationship to what is for them a wanted child. Accordingly, there can be no presumption that termination will follow a positive test result. However, the implicit judgement, following the explicit judgement at the PID stage, remains. But GIG does not believe that such judgements are a problem. The important thing is that compulsion is avoided and that all people are accorded equal rights as human beings. While GIG does not believe that pre-implantation and ante-natal diagnosis lead to discrimination against people living with a condition, it is, from the experience of its member groups, sensitive to the fact that while it might be the case that Greek society has a good programme of services for people with thalassaemia, societies do not in general provide the resources and access that are needed. Alongside others, GIG will continue to campaign for improved services and access for people living with genetic conditions. 3.2 Research on embryos and research on treatments for diseases using embryonic material GIG opposes any restriction on current practice which permits the creation of embryos for research. GIG notes that member states can opt-out of provisions of the Bioethics Convention which contradict national law; it expects the Government to exercise the opt-out on this issue. GIG also supports research which uses aborted fetal material in the search for cures for a range of disorders. In the words of Sue Watkin, Chair of the Huntington's Disease Association: 'Abortion is tragic, and not all abortions are done for grave reasons. But since they are inevitable, surely it is better to use this material than to have it flushed out into the North Sea.'[13]GIG does not believe that the use of fetal material in this way breaches the spirit of the Polkinghorne report. If a decision has already been made to abort, this decision cannot then be influenced by a physician suggesting that a particular kind of abortion is performed to facilitate the collection of embryonic material in a form that can be used for research. Another problem has been raised - any treatment that is developed would require perhaps seven aborted fetuses to treat one person. It is GIG's view that this issue is distinct from the matter of principle at stake. What it does show is that treatments for conditions such as Huntington's disease and Parkinson's disease that do not use fetal material must also be researched. NOTES 1. Hansard, 19 July 1996, (London: HMSO), pp. 1450, 1452 and 1456 2. For a report see Nature, Vol 384, 28 November 1996, p. 298. 3. Sunday Times Magazine, 10 March 1996. 4. Review of the Guidance on the Research Use of Fetuses and Fetal Material (London: HMSO, 1989) 5 . For a useful introduction to some of these issues, see Holton, G. (1996), Einstein, History and Other Passions: The Rebellion against Science at the End of the Twentieth Century (New York: Addison-Wesley) 6. In an interesting study of attitudes of adolescents in the Netherlands, Marleen Decruyenacre and colleagues found that while a majority would undergo ante-natal genetic diagnosis, only a small minority (less than 20%) would opt for termination after a positive test for a seriously-disabling condition. In a comment on the work, Jo Green rightly argued that naVvety to the reality of the situation was a powerful influence on young people's attitudes. Nevertheless, the results are still striking (Marleen Decruyenacre et al, 'Adolescents' opinions about genetic risk information, prenatal diagnosis, and pregnancy termination', Journal of Medical Genetics, 1995, 32: 799-804) 7. For a discussion of the moods and activities of the anti-abortion movement, see Catherine Bennett, 'Abortion debate is still a minefield', The Guardian 4 December 1996. The Birth Control Trust have also extensively documented the activities of the anti-abortion movement. 8. The Guardian, 1 August 1996. 9. Rose, H. (1994), Love, Power and Knowledge (Cambridge: Polity Press), p. 175, p. 196. The idea that choices are not freely made but are rather socially 'constructed' is the central theme of The Social Construction of Choice and the New Reproductive Technologies, edited by Gwynne Basen, Margrit Eichler and Abby Lippman. 10. Beck, U. (1995) Ecological Politics in an Age of Risk (Cambridge: Polity Press), p. 32. 11. See 'Every child a perfect child', New Scientist 28 October 1995, and 'Going to work on an egg', Times Higher Education Supplement 15 March 1996, for a flavour of the discussion. 12. Kitcher, P. (1996), The Lives to Come: The Genetic Revolution and Human Possibilities (London: Allen Lane, The Penguin Press), p. 85. 13. Sunday Times Magazine, 10 March 1996, p. 37. STATUS This document was agreed by the Management Committee of the Genetic Interest Group on 19 December 1996. It has been circulated to GIG member groups for endorsement.