Should we stamp out ‘designer deafness’?

As if the Human Fertilisation and Embryology (HFE) Bill wasn’t controversial enough, it has now been attacked for discriminating against deaf people.

Catholic opposition to the HFE Bill, which proposes to amend the UK’s 1990 Act of the same name, has been discussed elsewhere on spiked (see How the Church exploits secular uncertainty by Tim Black). But whereas the Catholic Church objects to several aspects of the Bill, the controversy regarding deafness centres largely on a single clause, Clause 14. This states that in assisted reproduction, ‘persons or embryos’ known to be at risk of developing ‘serious physical or mental disability’ or ‘serious illness’ must not be ‘preferred’ to persons or embryos where there is no such risk (1).

Deafness is not actually mentioned at all in the clause, but rather appears in the official Explanatory Notes to the Bill, which explain that ‘outside the UK, the positive selection of deaf donors in order deliberately to result in a deaf child has been reported’, and ‘this provision [in the Bill] would prevent selection for a similar purpose’ (2). Similar remarks have been made during House of Lords debate about the Bill, with Baroness Ruth Deech of Cumnor – a former chair of the UK’s Human Fertilisation and Embryology Authority – stating that ‘the deliberate choice of an embryo that is, for example, likely to be deaf will be prevented by Clause 14’ (3). Put simply, Clause 14 seems intended to prohibit ‘designer deafness’ – the deliberate creation of a deaf baby.

Debate on this subject has simmered since the Bill was first published in 2007, with organisations such as the British Deaf Association and campaigns such as Stop Eugenics arguing that Clause 14 ‘restricts the reproductive liberty for a citizens who possess specific characteristics’ and ‘prevents the birth of certain kinds of people’ (4). But the issue really hit the headlines in March 2008, with the intervention of deaf couple Tomato Lichy and Paula Garfield. Lichy and Garfield have one deaf three-year-old daughter, and are considering trying to have another child – possibly using in vitro fertilisation (IVF), and possibly using genetic testing to check for risk of serious disease. They do not wish to reject an embryo, as the proposed new law would compel them to, on the grounds that it is likely to be deaf. Lichy and Garfield celebrate the cultural – as distinct from medical – aspects of deafness, and they do not accept the common view of deafness as a disability.

Lichy and Garfield have been extensively interviewed in the print, broadcast and online media, attracting both support and opprobrium for their views (5). A reasonable person might ask, so what? Their views aren’t necessarily representative of all deaf people (who, contrary to what is sometimes implied, don’t think and speak as a unanimous ‘community’), much less of society at large. Furthermore, whatever political or linguistic sensitivities exist around deafness and disability, common sense and medical fact alike tell us that deafness is a physiological impediment to involvement in mainstream society, albeit not an insurmountable one, and possibly a psychological impediment as well (6).

But regardless of whether or not one sympathises with Lichy and Garfield, Clause 14 of the HFE Bill remains problematic. The cultural aspects of deafness have come to assume a meaning and an existence almost independent of the medical facts of deafness, to the extent that anyone now discussing ‘deafness’ in one sense risks giving offence to anyone who understands ‘deafness’ in the other sense. This is not a question of mere semantics, but a development that the UK government has actively supported and encouraged.

The UK Department of Health states in its Single Equality Scheme that it ‘uses the social model (as opposed to the medical model) of disability: ie, it is the barriers (physical, attitudinal) that society puts in the path of disabled people that prevents disabled people from living fuller lives, rather than any inherent factor’. It also states that ‘disability equality needs to be an underlying theme in policy development’, that with any new legislation there must be ‘rigorous and robust examinations of the policy’s impact upon each of the equality strands’, and that ‘all elements of the team’s work’ must ‘take forward equality and human rights in policy development’ (7).

These commitments make it difficult, to say the least, for the government to then turn around and say that people shouldn’t have deaf babies. Existing policy militates against the expression of any value judgement about disability, and saying that a hearing baby is preferable to a deaf baby is a pretty unambiguous value judgement. When it comes to drafting disability-related policy, the government has been hoist by its own petard.

The rationale and scope of Clause 14 are also problematic. Where the Explanatory Notes state that ‘outside the UK, the positive selection of deaf donors in order deliberately to result in a deaf child has been reported’, this seems to be a reference to Sharon Duchesneau and Candy McCullough – a deaf American lesbian couple who in 2002 used donated sperm from a deaf family friend, with a view to ensuring that the subsequent baby would be deaf. They did this after first approaching a series of sperm banks seeking congenitally deaf donors, and being turned down by all of them (8).

The reason I say this is likely to be the precedent that the Department of Health has in mind is because there are few – if any – other known examples of couples intentionally wishing to transmit disorders to their children. And to find even this one example, the government has been forced to look abroad. Does this not suggest that the number of people intending to do what the government wishes to prohibit are negligible, and not worth legislating for? More to the point, of what significance is a precedent that involves sperm donation to a piece of legislation that will prohibit embryo selection via genetic testing?

It’s one thing to have misgivings about the use of genetic testing to encourage the transmission of a disorder, and quite another thing to want to restrict the sperm (or egg) donors available in assisted reproduction. There exist many situations in which individuals elect to use donated sperm or eggs from friends who are known to them, and it’s possible that the social circle of a deaf individual will consist predominantly of other deaf individuals. Is the option of selecting donors in this way therefore to be closed off to deaf people? If so, does the government wish to take a pejorative view of the liberty of individuals with disorders and disabilities to reproduce off their own bat as well?

It’s worth mentioning at this point that any notion of deafness as automatically hereditary is genetically illiterate. There are several possible genetic causes of deafness, and transmission of deafness by a deaf couple to their child is contingent upon a large number of variable factors, genetic and otherwise. Even Tomato Lichy and Paula Garfield have made it quite clear that they have no intention of ensuring in advance that any child of theirs is deaf. Their wish is that if an embryo of theirs transpires to be at risk of deafness, then they should not be compelled to reject it in favour of another.

It’s clear that the government, in its desire to prevent people from inflicting deafness on their children (in the absence of any evidence that significant numbers of people wish to do so), has opened a can of worms. But if we set aside deafness as referred to in the Explanatory Notes, and look only at the wording rather than the spirit of the HFE Bill, is Clause 14 still problematic? Actually, yes.

To lay down in law that certain embryos known to be at certain risks must not be ‘preferred’ to others is a recipe for confusion and disaster in the clinics where assisted reproduction actually takes place. No embryo is perfect, not all risks are clear, different levels of risk are acceptable to different people, and different things constitute problems to different people. If tough decisions need to be made when there are multiple embryos at risk of developing different conditions, then the legal consequences under the proposed new law, of which potentially problematic embryo is preferred over another, are unclear at best.

Ultimately, such decisions can only be coherently made under the auspices of individual conscience and clinical judgement. And if you’re a government faced with the thorny task of overhauling fertility legislation, then accommodating individual conscience and clinical judgement is a good place to start.

Sandy Starr is communications officer at the Progress Educational Trust, and is organising a public event on ‘Debating Deafness and Embryo Selection’ in Cardiff on the evening of Wednesday 9 April. For further information, email sstarr@progress.org.uk

(1) Clause 14: Conditions of licences for treatment, Human Fertilisation and Embryology Bill, 6 February 2008

(2) Clause 14: Conditions of licences for treatment, Explanatory Notes to Human Fertilisation and Embryology Bill, Department of Health, 6 February 2008

(3) Human Fertilisation and Embryology Bill, Ruth Deech, House of Lords, 19 November 2007

(4) Response to Human Fertilisation and Embryology Bill, British Deaf Association, 4 December 2007. Also see the Stop Eugenics website

(5) For a profile of the couple, see Is it wrong to select a deaf embryo?, Clare Murphy, BBC News, 10 March 2008. For an article supporting their position, see Of course a deaf couple want a deaf child, Dominic Lawson, Independent, 11 March 2008. For an article criticising their position, see Choosing a deaf baby is criminal, Daniel Finkelstein, The Times, 12 March 2008.

(6) It has long been apocryphally claimed that deprivation of one sense (modality) is compensated for by enhancement of remaining senses, but recent work in this field suggests otherwise – senses may be more interdependent when it comes to learning than was previously thought. See, for example, Sound facilitates visual learning (.pdf 400KB), Robyn Kim, Aaron Seitz and Ladan Shams, Current Biology, vol 16, no 14, July 25 2006, p1422-1427; and Sensory modalities are not separate modalities: plasticity and interactions (.pdf 111KB), Ladan Shams and Shinsuke Shimojo, Current Opinion in Neurobiology, vol 11, no 4, 1 August 2001, p505-509

(7) Single equality scheme 2007–2010 (.pdf 665KB), Department of Health, 8 June 2007, p15, 34, 76

(8) See Couple ‘choose’ to have deaf baby, BBC News, 8 April 2002