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

Tue Feb 5 21:30:34 UTC 2008

Of course, one question is whether the deaf parents who want a
likewise-handicapped infant (yes, I'm calling it handicapped, just like I
call my own ADD a handicap), if they were allowed to deliberately do so (as
opposed to it happening by their selection of mates plus chance), would pay
for all accomodations necessary (including no obligations on the part of the
rest of society to do such accomodations). The answer is, of course, "no",
from the below. Wanting _both_ societal accomodations _and_ the choice for
their offspring to be less able is even more wrongful than the latter alone.

     -Allen

P.S. I also note a history of discrimination by "Deaf"-community people
against those who, for instance, get cochlear implants, as seen in the US at
Gaudillet (sp?) University among other places.

In message <20080205160659.GH10128 at leitl.org> (on 5 February 2008 17:06:59 +0100), eugen at leitl.org (Eugen Leitl) wrote:
>----- 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. 

-- 
Allen Smith			http://cesario.rutgers.edu/easmith/
September 11, 2001		A Day That Shall Live In Infamy II
"They that can give up essential liberty to obtain a little temporary
safety deserve neither liberty nor safety." - Benjamin Franklin