Choosing children: Reflections on the regulation of embryo testing

My remit for this piece starts with a request to 'reflect on the past nine years and beyond'. Coincidentally, it was about nine years ago that I made my own first tentative foray into publishing in the area of reproductive law and ethics, and it is a sobering thing to take stock of what has happened in the meantime.

The technology of PGD (preimplantation genetic diagnosis) - my own particular area of interest - has certainly moved on. It is now possible to test for over fifty different conditions, and demand is growing for tests for non-pathological traits such as sex and tissue type. The literature on the subject is also a lot richer; the last year or so has seen the publication of several books by British academics, looking wholly or largely at this technology, and offering a range of perspectives (1).

To what extent has this been reflected in the regulatory regime? The Human Fertilisation and Embryology Authority (HFEA) has certainly adopted a somewhat lighter touch under more recent regimes. The volte face on tissue typing was welcome - if too late for the Whittaker family (2) - and its report 'Tomorrow's Children' (2005) was considerably more balanced and proportionate than previous approaches to the welfare of the child. 

The Government, alas, seems determined to move in the opposite direction. The new Human Fertilisation and Embryology Bill seems destined to make the rules regarding PGD even stricter, in both positive and negative ways - allowing PGD only for a limited number of reasons, and requiring certain implantation decisions to be made thereafter. In so doing, it fails utterly to engage with some of the most compelling ethical arguments.

Clause 14 (4) (9) requires that embryos known to have a significant risk of 'serious physical or mental disability' or 'serious illness must not be preferred to those that are not known to have such an abnormality'. There are at least two problems with this clause. The first relates to how we define 'serious disability' or 'abnormality'. This question has been at the heart of much of the recent debate about whether deaf parents should be allowed to choose to create a deaf child. Is deafness a 'serious disability'? Is it even a disability at all? Paragraph 110 of the Explanatory Notes to the Bill make it clear that, as far as this Clause is concerned, selection of embryos - or of gamete donors - for deafness would be prevented.

For some deaf people, this designation is decidedly problematic. As Tomato Lichy told The Observer recently (9/3/08): 'Being deaf is not about being disabled, or medically incomplete - it's about being part of a linguistic minority'. Even for those sceptical of the claim that deafness is not a disability at all, it may seem something of a stretch to classify it as a 'serious' disability, a term that, in this context, we might think more readily applicable to disastrous conditions like Tay Sachs disease.

These are arguments that merit serious consideration, but there is another objection to Clause 14 (4) (9) that has received rather less attention, an argument that does not rely on any particular view as to whether deafness is or is not a 'disability'. It relies, however, on a contention that appears highly counter-intuitive. Most people, it seems, share the sort of incomprehension expressed by John Humphrys during his interview with Mr Lichy on Radio 4's 'Today' programme, and espoused by Nicholas DeLacy-Brown in his BioNews commentary:  'the future child is owed a duty by which the most positive outcome is chosen by its parents.' (BioNews, 27 July 2007)

The problem with this kind of argument is that it relies on regarding 'the future child' as a single entity, rather than one of two possible future children who may come to exist. This is muddled thinking. Lichy and his partner Paula Garfield want to be able to implant a deaf embryo (more accurately, of course, an embryo that is likely to develop into a deaf child). If this is permitted, a deaf child will be born. If they are denied the choice, a hearing child will be born, but significantly, a different child will be born. For the deaf child, the possibility of 'life with hearing' was simply not on the table; the only alternative to life with deafness was no life at all.

Of course, it might be that certain kinds of disability are so dreadful that the lives affected by them are actually worse than non-existence. A deaf child will have no cause to complain to his parents, but maybe a child born with Tay-Sachs disease would actually have been better off never being born. If Clause 14 (4) (9) had limited itself to these plausibly worse-than-nothing lives, it could be said to rest on some coherent ethical principle. As it stands, it occupies the bizarre position of apparently seeking to protect future children from deafness by protecting them from existence; of safeguarding their interests by requiring their replacement with other, healthier children.

If potential parents want to select the 'healthiest' embryos, that choice should be respected; no harm is done to potential future people by deciding not to bring them into being. Equally, though, it is hard to see how any harm would result from the choice to implant a less healthy embryo, providing the resulting child has a subjectively worthwhile life. 

Certain - often quite ingenious - responses have been offered to this 'non-identity problem'. Jonathan Glover and John Harris have both espoused versions of non-person-affecting approaches to such questions. According to these, we should make choices that make the world a better rather than a worse place, even if no particular people would have been harmed by the alternative choices. 

But if we have an obligation to contribute to the collective pot of human happiness by having the 'best possible children', what does this say about those who chose to have no children at all? It seems a bit like saying that, while we have no obligation to give anything to charity, those who contribute a bit are duty-bound to contribute as much as possible. For that reason, and others, my own preference is to say that our moral duties extend to those people who actually exist, or who will exist in the future. Nonetheless, there is some substance to these non-person-affecting views, and this is a perspective worth taking seriously.

The Government, alas, seems to have felt no need to give such an account of its reasons. Intuitive revulsion at the prospect of 'designer babies' and elective disability seems to have informed the new Bill far more than considered ethical argument. It is disappointing to reflect that in the nine years since BioNews commenced, and I became involved in this area, so much intellectual effort has been expended by so many people to such apparently little effect.