13 February 2006
freelance science writer, formerly of the UK's Genetic Interest Group.Appeared in BioNews 345
This made me wonder: does Baroness Kennedy think that we live in such a culture? The report itself speaks of the need to balance reproductive autonomy against 'the potential for harm to other individuals or society at large'. It goes on: 'in conjunction with the precautionary principle, this may be felt to justify restrictions on unfettered choices in this field'. The overall impression one gets is that, despite many years of collective experience with assisted conception and selection prior to birth, the HGC is unable clearly to articulate enthusiasm or confidence in them, at least in this public document.
Regarding one of the most basic aspects of current practice, prenatal screening, a strikingly mealy-mouthed defence is offered: 'On balance, we consider that the provision of programmes of prenatal screening, diagnosis and selective abortion in cases where a fetus has a serious condition can be justified by the principle of reproductive autonomy'. Let me suggest a re-write: 'It is the most natural thing in the world to wish for a healthy, happy baby. Screening programmes have been shown to be consistent with women's and couples' desire to achieve this. To discover that a wanted pregnancy is affected by a serious condition is of course very troubling, but the vast majority accept the risk of such a discovery because of the choices it makes possible'.
Having raised problems with prenatal screening, 'a strong programme of research aimed at better treatments for genetic conditions, coupled with availability of appropriate services for those with genetic conditions' is put forward as 'the best means of addressing some of the ethical objections to prenatal screening'. Later it is suggested that if such research programmes were successful in generating therapies, this would 'strongly influence the reproductive decisions of prospective parents'. As the report acknowledges, the most important reason to promote research and improve services must surely be to improve the lives of existing people with genetic disorders and other disabilities. This may, as a by-product, affect the reproductive decisions of some women. But in many cases it may not. There is much evidence that for some mental disabilities and probably for most serious conditions, women and couples are making a decision about the kind of child they would like to have and the life they envisage for the child and themselves. Even the prospect of treatment for an affected child may not alter the choices they would make, given the alternative possibility of giving birth to a healthy child.
Running through the report is what appears to be a difficulty in integrating concerns about disability into a coherent overall picture. To avoid creating pressure, or indirect pressure on women to terminate a wanted pregnancy on the grounds of disability, society is encouraged to devote considerable resources and effort to medical research and service improvement - something I would of course agree with. But on the other hand, the small risk of disability arising due to twinning, following the implantation of two eggs during routine IVF, is given as the key example of where it is legitimate for society to intervene on cost grounds to restrict reproductive choice. The comparison is of course not straightforward, and no doubt distinctions can be drawn on the grounds that medical assistance is being provided to have children in the case of IVF, but the contrast is still an intriguing one.
A final word on 'designer babies'. This, the report argues, is what troubles the public most; specifically the idea that we are on a slippery slope towards creating them. Some years ago, Marcus Pembrey, a leading UK clinical geneticist (and at the time chair of Progress Educational Trust) labelled the idea 'Designer nonsense'. Between then and now other leading voices have given the notion of designer babies greater credence, notably, the Nuffield Council on Bioethics in its 2002 report into Genetics and Human Behaviour. The HGC takes us back to the old future, by repeating Pembrey's argument that in any foreseeable circumstances, there will be insufficient embryos to select from to realise the desire for the intelligent, musical, athletic offspring it is feared we harbour (assuming the many hypothetical genetic factors exist and research can uncover them). But perhaps the change of argument masks a similar, defensive, approach: Nuffield called for bans, to be enacted now, on the use of selection for such ends, while the HGC says 'don't worry it can't happen'. I believe that a better response than either of these approaches is to relax, positively endorse selection for what it can do in the present and tell anyone concerned about the distant future that we can't really be sure what will happen, but if the possibility ever looks realistic we'll ponder it then.