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Legislation, Deafness and Reproductive Rights: Comments on Clause 14 of the Human Fertilisation and Embryology Bill

5 February 2008
By Teresa Blankmeyer Burke
Bioethicist, Philosophy and Religion Dept, Gallaudet University,Washington DC, teresa.burke@gallaudet.edu; Rachel Belk MSc, Genetic Counsellor and NIHR Research Fellow, Faculty of Medicine and Human Sciences, University of Manchester, UK, rachel.belk@postgrad.manchester.ac.uk; Anna Middleton PhD MSc, Consultant Research Genetic Counsellor, Institute of Medical Genetics, School of Medicine, Cardi
Appeared in BioNews 443
A new Bill to replace the Human Fertilisation and Embryology Act 1990 is passing through the UK Houses of Parliament at the moment. One particular clause raises a controversial issue regarding preferences of certain kinds of persons or potential persons. Clause 14, section 4, number 9 (Lines 23-30, Page 10) states:

'Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk that a person with the abnormality will have or develop -

(a) a serious physical or mental disability,

(b) a serious illness, or

(c) any other serious medical condition, must not be preferred to those that are not known to have such an abnormality'.

One might assume that a condition like deafness would not fall into the category of 'serious illness' as given above. However, according to the Explanatory Notes to the Bill (no 109) this clause has been added to prevent 'the positive selection of deaf donors in order [to] deliberately...result in a deaf child.' This was further supported by Baroness Deech's comments in the House of Lords that one outcome of this clause would be that deaf parents could not use PGD to select embryos with the genes for deafness.  

On 23 December 2007, an article in the Times newspaper entitled 'Deaf Demand Right to Designer Deaf Children' reported opposition to Clause 14 in the British Deaf (see Note 1) community ranging from the Royal National Institute for Deaf and Hard of Hearing People to the British Deaf Association. The article provoked a firestorm of responses, most of which decried the immorality of designing babies with disabilities. However, the primary concern of the Deaf community regards the Bill's language and intent.

The real issue here is not designer babies, but reproductive liberty, which includes the right of the potential parents to select intact embryos created from their own unaltered genetic material for implantation. If passed with the above wording, the Bill would make it illegal for a deaf adult to donate gametes for IVF (they must not be 'preferred' to a hearing person) and one would assume this includes donating to their close relatives. It would also make it illegal for deaf parents, using PGD, to implant embryos with the genes for deafness if there are available 'hearing' embryos (the deaf embryo must not be 'preferred' to a hearing one).  

Actively using genetic technology to enable a deaf couple to have deaf children is controversial. It is also likely to only be considered by a very small number of people. Indeed, research from both the UK and US which ascertained the attitudes of deaf people showed that very few would be interested in using genetic technology in this way; this is also supported in practice. This poses the question of whether it is necessary to legislate against something that is very unlikely to happen and for which guidelines already exist.

Clause 14 is being seen as discriminatory against the equal rights of Deaf people. The wording of the Bill pitches one group of people (deaf) against another (hearing) by creating a value judgement which implies that deaf people are not to be valued as hearing people are and the same for their embryos. The majority (hearing) population's perception of deafness is therefore prevailing in an issue which has implications predominantly for the minority group whose perspective is not legitimized. This contradicts the attempts by the UK government to recognise the equal status of the Deaf Community a) in policy, e.g. through recognition of British Sign Language as a UK language in 2003 and b) in law, through the protection of the equal rights of deaf people (Human Rights Act 1998).

A second area of confusion is the language of Clause 14, the scope of which is wide-ranging and therefore, potentially, a matter of concern for all persons. As it is written, the class of people 'known to have a gene, chromosome or mitochondrion abnormality involving a significant risk' is changing rapidly as research scientists acquire more knowledge about human genomics. Second, the ambiguity of the phrase 'significant risk' is troubling; coupling this concept with the other ambiguous concepts of 'serious disability, illness or medical condition' leaves considerable room for interpretation, and could ultimately apply to a large number of people in the general population, perhaps even a majority. This room for interpretation is appropriate within guidelines, but the argument for taking this out of the context of a private decision between potential parents and their doctors and placing it within primary legislation is much less persuasive.

Several ethical and professional issues are raised here: namely, questions about what counts as a serious abnormality and who should decide how people are permitted to reproduce. There are many areas of the proposed Bill which are seen as valuable and timely, but it is argued by a sizeable and diverse group that this section of Clause 14 should be amended or omitted from the Human Fertilisation Embryology Bill. For more information on the Deaf campaign against the Bill see www.StopEugenics.org.uk.

Note:

1) It is usual for 'deaf' (lowercase d) to refer to a medical definition of hearing loss and 'Deaf' (capital D) to refer to those people who regard their deafness as a linguistic and cultural difference rather than a disability.  Unless the authors are specifically referring to the latter group (i.e. Deaf community), for ease of reading, deaf (lowercase d) is used generically and covers all perspectives of deafness.

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