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Embryo testing: Why drawing lines risks devaluing the disabled

13 March 2007
By Dr Colin Gavaghan
Lecturer in Medical Law and Ethics, University of Glasgow and author of 'Defending the Genetic Supermarket: The Law and Ethics of Selecting the Next Generation' (Routledge, 2007)
Appeared in BioNews 398

It isn't uncommon, at international conferences, to hear praise for the UK's approach to regulating reproductive and genetic technologies. The cautious, incremental approach of the Human Fertilisation and Embryology Authority (HFEA) is often contrasted - favourably - with, for example, the rather dramatic oscillation between regulatory extremes seen in Italy, which had one of the most laissez faire approaches in Europe one day, and one of the most restrictive the next.

However, one of my arguments in my book 'Defending the Genetic Supermarket' is that the approach of the HFEA is not just rather arbitrary and self-contradictory in terms of the ethical principles it applies, but actually risks exacerbating a particular species of problem

In May 2006, the Authority published its decision on the use of PGD for inherited cancer susceptibility (1). In announcing that such tests would be permitted, the Authority was at pains to reassure those concerned about floodgates being flung wide open. 'This is not,' Dame Suzi Leather assured the public, 'about opening the door to wholesale genetic testing. This is about considering a particular group of genetic conditions to be sufficiently serious to merit the use of PGD embryo testing'.

On the day that the consultation was launched, Josephine Quintavalle, Director of Comment on Reproductive Ethics (CORE), argued on CORE's website: 'We are looking at issues which go to the heart of our attitudes to disability, and the offensive message that is sent in this instance is that the disabled or sick are better off not being born' (2).

It's safe, I think, to say that there are very few issues on which the arguments in my book are likely to accord with those of Mrs Quintavalle! On this, though, I rather fear she may have a point. Her comment is resonant of a particular species of objection - sometimes described as 'expressivist' objections - directed at what is deemed to be a judgement inherent in such technologies about the value of certain lives. 

Expressivist arguments can be fairly complex and varied, and it's difficult to summarise them in a few lines. Broadly speaking, though, they are concerned with the sort of signal that technologies such as PGD send to people already born with genetic disorders, as well as to those who will be born with such disorders in the future (if we assume, plausibly, that technologies like PGD will never eliminate all such births). There exists ample evidence of distress and offence in the face of the perceived message that, as one commentator put it, 'some of us are "too flawed" in our very DNA to exist; we are unworthy of being born' (3-4).

What signal do regulatory bodies like the HFEA send when they limit the use of PGD to 'sufficiently serious' genetic conditions? At first glance, theirs' may seem like a sensible approach. But there is another way of looking at such restrictions, one that asks: if there is merit in the objection that 'society' sends out negative signals to disabled persons when it allows prospective parents to screen them out of existence, then how much reinforced is that message when 'society' expressly prohibits every other kind of screening?

Consider the question of tissue typing. The HFEA clearly regarded the use of PGD in the Hashmi case (in which the couple wanted to use PGD to select an embryo that was both free from disease and a tissue-matched cord blood donor for their son Zain, who is affected by beta thalassaemia) as being for the benefit of the future child; were this not so, then the fact that its use by the Whitakers (who wanted to use PGD to select embryos only on the basis of their suitability as a tissue-matched donor) would not benefit their future child would not amount to a significant distinction. Given that there was no prospect of curing beta thalassaemia, this could only mean that the potential future Hashmi child possessed some kind of interest in avoiding being born with the burden of this disease. Yet what message does this decision send to Zain Hashmi, or to others who live every day with that same illness? A clearer example of PGD sending a societal message that 'it would have been better had you not been born' would be hard to find. 

For some commentators - like, we might suppose, Mrs Quintavalle - the only solution is to prohibit the use of PGD altogether. But such a ban would only mean that those disabled people who worry that they would never have been born if PGD had existed would be replaced by another generation who will worry that they would never have been born had PGD been allowed.

Suppose for a moment, though, that we adopted a radically different approach. What if, instead of trying to draw lines between disabilities of greater and lesser 'seriousness' - and implicitly, between lives worth and not worth living - the Authority were to permit any prospective parents to screen for any trait, whether or not it is associated with what is conventionally seen as a 'disability'. Then it might be possible to argue that the value society is upholding is that of reproductive choice, whatever that choice may be. With regard to the specific traits that prospective parents might desire or reject, the HFEA could with some plausibility argue that they are entirely neutral; it would, after all, be difficult to argue that 'society' was implicitly devaluing the 'disabled' if it allowed, say, couples to select on the grounds of sex, or tissue type. 

The media response generated by the consultation on cancer genes was predictable in its hyperbolae, and it was not long before allusions were being made to 'eugenic'. But while it might be thought that an analogy between an optional test such as this, and the coercive measures that accompanied the worst excesses of the eugenics movement, is somewhat strained, there is a sense in which the UK's present approach to PGD might be thought eugenic in character. When law and policy restrict the use of PGD to the avoidance of children with genetic defects, denying it to those with other values and priorities, it becomes at least arguable that our approach to this technology, far from being driven by an agenda of promoting individual choice and respecting diversity, is underpinned by judgements about the value of those lives that are avoided. It is scarcely surprising if those affected by genetic illnesses or disabilities, or those who care about or for such people, look with some offence and suspicion at those laws and policies.

1) 'HFEA - Authority decision on PGD policy', HFEA, 10 May 2006
|  23 January 2022
2) Kill the carrier? New HFEA consultation', CORE, 11 August 2005
|  23 January 2022
3) Marsha Saxton, Disability Rights and Selective Abortion', in Solinger, ed.
|  23 January 2022
4) Abortion Wars: A Half Century of Struggle, Berkley: University of California
|  23 January 2022
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7 May 2005 - by Professor Sally Sheldon 
The recent House of Lords decision in Quintavalle (on behalf of Comment on Reproductive Ethics) v HFEA [2005] represents what will hopefully be the last stage in a long legal battle for the Human Fertilisation and Embryology Authority (HFEA) and Raj and Shahana Hashmi. The Hashmis have a son of...
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