Selective Reproduction, Bioethics, and the Idea of Eugenics
Wellcome Collection, 183 Euston Road, London NW1 2BE, UK
Monday 6 June 2011
A seminar entitled 'Selective Reproduction, Bioethics, and the Idea of Eugenics' held at the Wellcome Collection Conference Centre on 6 June attempted to untangle what is meant by the contemporary 'idea of eugenics' in relation to bioethics and, specifically, selective reproduction. Stephen Wilkinson, professor of Bioethics at Keele University and author of 'Choosing Tomorrow's Children: The ethics of selective reproduction', asked the question: 'Is the fact that an action or policy is a case of eugenics necessarily a reason not to do it?' Professor Wilkinson's response was that 'once coercion is taken out of the equation, the answer to this is not obviously yes'.
As became clear from the day's discussion, there are many ways in which people today interpret the idea of eugenics. But it was the question of coercion, and its flipside - choice - that emerged as the most useful in understanding the fraught nature of contemporary debates about selective reproduction.
Modern society generally accepts that it is wrong to force people into particular reproductive outcomes: that it is wrong to force women to have babies through prohibiting access to abortion, and that it is wrong to force women to have abortions. When it comes to selective reproduction, whether through abortion or IVF, it is also generally accepted that the person who makes the decision should be the parent, who has to live with the reality of caring for a disabled child.
A pragmatic acceptance has been reached in the UK that the decision about whether to bear a child with a known genetic condition or fetal anomaly should ultimately rest with the parents. Our unease about coercion, in this respect, leads to an acceptance of the primacy of parental choice. However, there are significant variations in the ways that parental choice is discussed and accepted in this area, and this leads to some difficult tensions.
For example, disability rights campaigners have often argued that it is problematic for parents to decide not to have a child with a known disability, as this expresses a negative view about that disability in general - and by extension those living within our society affected by that condition. At this seminar, many of those voicing concerns about selective reproduction accepted that couples did not make decisions about their embryos or fetuses based on ideas about disability in general, but rather that they made such decisions based on their own hopes and experiences, and their capacity to raise a disabled child.
However, it was suggested that this was still problematic, because people could be forced to make such choices where disability is stigmatised, and carers of disabled people are often not adequately supported. The question that arose from this discussion was the extent to which people who make decisions around selective reproduction can be seen to be making genuine choices - or whether they are pushed towards a certain course of action by social and cultural pressure against having a disabled child that they would want, if only things were different.
In this regard, it was suggested 'choice' is too simplistic a term and it is the context in which people make these choices that needs to be appreciated, with the view to this being changed.
This is a clever argument, as it speaks to a number of observations that are true. But do these observations warrant junking the idea that individuals make choices? It is worth looking at some of the arguments in turn.
The availability of technologies such as prenatal testing and PGD does mean that parents-to-be are confronted with a decision to make about selecting an embryo, or continuing a pregnancy to term, when in previous times they would have simply had to cope with the hand that nature dealt them. It is easy to see how such choices can also be experienced as pressures - to have a 'normal' child, or conversely, to raise a disabled child with the burden of knowledge that you could have decided differently.
It is also easy to see why some might flinch at the casualness implied by the term 'choice' when it comes to such hard decisions as aborting a wanted pregnancy, or embarking on a complex and expensive process of embryo selection through IVF. This is not a banal choice like choosing which outfit to wear for work; and the parameters of this choice are constrained from the start. Selective reproduction does not give individuals the choice to conceive, naturally and easily, a healthy, non-disabled baby - the experience of abortion for fetal anomaly, for example, is more like a tough decision between a rock and a hard place.
There is a long-standing debate between the 'medical' and the 'social' models of disability, which rests on the question of whether disability can be seen as a naturally-given condition (the disability is not being able to walk, or see, or hear) or a condition that would be considered normal if only society provided adequately for disabled people.
But although the 'models of disability' discussion is often a bitter dispute, both sides agree that being disabled, and caring for a disabled person, in today's society has demonstrable financial, physical and emotional costs. Women, or couples, making reproductive decisions do not do so in a vacuum; they are thinking about the child they will raise in the here and now. They will be guided, not only by what they think of Down's syndrome, for example, as a condition, but what they know about the practical difficulties of raising a disabled child in a society organised around non-disabled people.
So it is undoubtedly true that reproductive decisions are made in the context of the social and personal constraints that affect individuals. But this does not mean, as some of the arguments that problematise selective reproduction tend to imply, that people do not 'really' make choices.
They may not be able to choose the outcome that they really want - to have this child without that condition, or to have this child along with enough money and support to feel that they can care for it properly. But they can still make the choice about whether to have this child or not; or (with IVF) to implant that embryo or another one. In this regard, the combination of technology and the principle of individual choice represents a massive step forward for society.
The principle of choice was powerfully stated by David Archard, Professor of Philosophy and Public Policy at Lancaster University, and a member of the Human Fertilisation and Embryology Authority (HFEA). 'I'm a liberal to the extent that I believe that individuals can make choices - but I'm certainly not naÃ¯ve about the constraints of those choices', Professor Archard said.
If we do not accept that people make choices, but rather see them as passively responding to all the pressures placed upon them, we do nothing to improve the conditions under which babies (disabled or otherwise) are born. And if we see women as mere victims of the hand that nature and/or society has dealt them, we deny their capacity for making decisions about their reproductive lives.
On the other hand, allowing people to make decisions about their personal lives lies at the core of a liberal approach to policymaking; and it is precisely this principle that provides the barrier to coercive policies, in the form of eugenics or anything else.