By Stephen Wilkinson, Lancaster University
Biomedical science is capable of giving people more choice than ever before about what their future children will be like. Such possibilities raise important ethical issues, along with closely related questions about the extent to which law should control these areas of medicine. These questions were explored in a series of seminars and essays on Eugenics and the Ethics of Selective Reproduction, supported by the Wellcome Trust.
One controversial and difficult question, for example, is whether people who positively want to have a child with a disability (some members of the Deaf community, for example) should be allowed to use embryo selection to achieve this?
Many people’s first reaction is that it would surely be utterly abhorrent deliberately to deafen a hearing child, or to cut off the hands or legs of a healthy child. And if this is so, then how can it be right deliberately to implant an embryo knowing that it will develop into a child with a disability, and wanting it to do so? Isn’t this ethically the same as mutilating an existing child?
This question however is not as straightforward as it might appear. Certainly it would be profoundly wrong deliberately to mutilate a healthy child, or to make it deaf, because it would harm the child, make that child ‘worse’ off. But where it’s a matter of choosing which embryo to implant, which embryo will develop into a child, there’s a difficulty in saying that implanting an embryo which will eventually become a child with a disability actually harms that self-same child. Why? Because the only alternative to implanting that embryo – that which will become let’s say, Baby Alice, who will be deaf – is not to implant that embryo, and to choose another instead. But if a different embryo were implanted instead, then the child that it develops into may not be deaf, but neither will it be Baby Alice at all. It will be another, different, child – Baby Barbara, say.
So if Baby Alice says to her parents: ‘Why did you allow me to be born deaf?’ their answer could be: ‘That was the only way you could have been born at all. We couldn’t have had you without the deafness; the only alternative was to have a totally different child altogether’. This is quite unlike the case of a hearing child who has been deafened: he could perfectly well have continued to live as a hearing child, and so he is truly harmed – made worse off – by the choice to make him deaf. But Baby Alice, if she gets born, won’t have been harmed by being implanted, since it won’t have made her ‘worse’ off. For the only alternative was, in effect, never to have been born.
So when the choice is between deafness and non-existence, we can’t say that the deaf child has been harmed by being chosen for existence: she hasn’t been harmed because she hasn’t been made ‘worse off’. And that’s because existence as a deaf child isn’t usually worse than never having been born at all. For this reason amongst others, we concluded that a specific ban on ‘choosing disability’ via embryo selection, such as has existed in the UK since 2008, is unjustified.
Another controversial area is embryo sex selection. In the UK, choosing to have a boy or a girl in the context of IVF is prohibited, except when there’s a heightened risk of the child having a sex-linked disorder (such as haemophilia, which only affects males).
For people undergoing IVF, sex selection testing by embryo cell biopsy is reliably predictive and is not thought to harm the resulting child. The main arguments for the present ban are that sex selection could cause an unbalanced population (e.g. more boys than girls) and that it’s sexist.
My own view is that neither of these arguments is convincing in the UK context and that the ban on ‘social’ sex selection is therefore not defensible. Population sex imbalance is a problem in some Asian countries. In the worst affected areas, there are said to be 30 per cent more boys than girls. However, the European evidence suggests that this isn’t something we would need to worry about within the UK since, of those wishing to choose, the number of parents preferring a girl is about the same as the number preferring a boy.
As for the concern about sexism, while sex selection certainly can be sexist, not all people who wish to choose a boy or a girl want this for sexist reasons. Some may simply like features that they associate with boys or with girls, or may value the kind of relationship that they think will be possible with one or the other. Also, people with (say) four boys already might want a girl for reasons of diversity and variety (‘family balancing’) rather than anything sexist. So it’s not clear that the ban on sex selection can be justified by reference to concerns about sexism.
Some of our conclusions are controversial and not all readers will agree. Nonetheless, even if our conclusions aren’t accepted, we still hope to have informed the debate by investigating whether even some rather unpopular ethical positions may not be as indefensible or as abhorrent as they at first appear, and conversely whether some commonly used arguments are actually flawed. We all stand to learn a great deal from open-minded bioethical debate and I very much hope that our work serves to promote that end.
Eugenics and the Ethics of Selective Reproduction by Stephen Wilkinson and Eve Garrard is free to download. A limited number of hard copies are available on request. Please email: research.humsstempadmin@keele.ac.uk
The production and writing of the essays in this report were supported by the Wellcome Trust’s Society and Ethics programme.
Stephen Wilkinson
Stephen Wilkinson is Professor of Bioethics in the Department of Politics, Philosophy and Religion at Lancaster University.
Image credit: Anthea Sieveking, Wellcome Images
Filed under: Genetics and Genomics, Medical Humanities Tagged: Bioethics, IVF, Reproduction, Selective reproduction, sex selection
