Sunday, April 13, 2008

Genetic DisEnhancement -- Does reproductive autonomy extend to choosing a disability?

From the UK Telegraph today, deaf couples could be allowed to screen their embryos in order to select a deaf child after protesters persuaded the Government to remove references to deafness from the proposed Human Fertilisation and Embryology Bill.

I can appreciate (although not necessarily agree with) the stance that tampering with any embryo is 'playing God.' Similarly, I can appreciate the arguments that genetic enhancements pose concerns in terms of creating inequities and in terms of eugenics. But I have difficulty understanding, much less appreciating, the argument that a couple should be allowed to genetically 'disenhance' their child. I understand that some deaf couples argue that deafness is not a disability, but rather "being part of a linguistic minority." But maybe it is because I spent too much time in the Rhode Island State House as legislative counsel in the 80's and 90's listening to the testimony of Deaf Advocacy groups lobbying to make sure that public services complied with the Americans with Disabilities Act. I have difficulty reconciling that deafness, under the law, is a recognized disability, but for the purposes of reproductive autonomy, it is not?

My concern about removing the clause banning the creation of disabled children entirely, is why stop at deafness? Aren't the primary purposes of medicine to heal, to cure diseases, restore, and alleviate suffering? One commenter suggests, by way of a 'wrongful birth suit', the imposition of legal liability on the part of the parent to any offspring deliberately brought into the world with less than the normal range of faculties.

So the question is how far does reproductive autonomy go? Nobody wants to see a fellow human being struggle or suffer, especially in the name of 'reproductive autonomy.'


ravigv said...

Perhaps the questions might go further if you thought about the social model of disability? Certainly such a model suggests why it could be regarded that bringing a deaf child into the world is (at the least) not a harm, whereas refusing to provide a signing interpreter when required might be. It might also suggest just how manipulative the language choice of disenchance can be, and how complicated your reference to the purpose of medicine as healing winds up being.

H said...

Why progressives should be for deaf babies.

My view, and I have been following this closely, is that anyone concerned
for our freedom to use reproductive and other potentially enhanceing
technologies should join the campaign to get Clause 14(9) of the new HFEA
Bill removed. Clause 14 (9) would amend the old HFEA Act to make it
illegal to implant embryos with 'abnormalities' which might contribute to
a 'serious medical condition or disability'. The PROBLEM is that nowhere
does it define 'serious', 'disability' or 'abnormality'. The explanatory
notes define by example only, that example being deafness. (An
unacceptable breach of the UK's Disability Discrimination Act by the way -
especially as they also broke the consultation requirements, but that's
the subject of a separate campaign.)

So, firstly, this clause could be used to stymie any change to the genome
that might be seen as risky. Anyone hoping for designer children - this
will be a big stumbling block of the 'but we can't get there from here'
sort. (The Bill's stated main purpose is to prevent selection FOR positive
traits. Contradiction? Yep.)

Secondly, if we are going to sort embryos (already existing- not designer)
by genetic condition then watch out all you dyslexic, ADHD, Autistic-scale
creative folk who make this technological world go around. Deafness is a
mere data input-output problem, for which a good solution - sign language
- already exists. Dyslexia, ADHD, manic-depression, autistic specturm and
other conditions not usually thought of as _serious_ any more than
deafness is are processing glitches and thus far more difficult to
overcome than deafness in integrating people into the economy. (Presumably
what is behind these government attempts to reduce the deaf population by
law. The alternative being just plain primeaval ignorance.)

Of course there are conditions for which life itself seems cruel. Drawing
that line isn't so simple either for a compassionate human. But unless one
is wedded to some idealistic and unrealistic monolithic conception of the
perfect human being a little Millian diversity is surely a good thing.

Where deafness is concerned, let's focus on the tregedy of ageing related
deafness, which steals lives, human contact, friendships and meaning from
life, and not on the issue of congenital and cultural deafness which many
of those experiencing do not see as an equivalent tragedy to later life
hearing loss, and which helps to generate and preserve new thinking on
language, art, communication, and, in particular, the importance for
education and social integration of human relations.

Choice, not coercion!