[tt] [technoliberation] UK to forbid intentionally disabling babies with ART

Tue Feb 5 16:06:59 UTC 2008

----- Forwarded message from "Hughes, James J." <James.Hughes at trincoll.edu> -----

From: "Hughes, James J." <James.Hughes at trincoll.edu>
Date: Tue, 5 Feb 2008 10:21:43 -0500
To: technoliberation at yahoogroups.com,
	News and views from the IEET <ieet-news at ieet.org>
Subject: [technoliberation] UK to forbid intentionally disabling babies with ART
Reply-To: technoliberation at yahoogroups.com

http://www.BioNews.org.uk

B i o N e w s  443 

Week 28/1/2008 - 3/2/2008

LEGISLATION, DEAFNESS AND REPRODUCTIVE RIGHTS: COMMENTS ON CLAUSE 14 OF
THE HUMAN FERTILISATION AND EMBRYOLOGY BILL: 

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 pre-implantation genetic
diagnosis (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.

 - Teresa Blankmeyer Burke MA, Bioethicist, Philosophy and Religion
Dept, Gallaudet University, Washington DC, teresa.burke at gallaudet.edu;
Rachel Belk MSc, Genetic Counsellor and NIHR Research Fellow, Faculty of
Medicine and Human Sciences, University of Manchester, UK,
rachel.belk at postgrad.manchester.ac.uk; Anna Middleton PhD MSc,
Consultant Research Genetic Counsellor, Institute of Medical Genetics,
School of Medicine, Cardiff University, UK, middletona1 at cardiff.ac.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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