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Friday, October 04, 2002  

Designer disability

Under the heading Will deaf lesbians be a libertarian vanguard for human genetic modification?, I recently posted the following press release to the Libertarian Alliance Forum :

Deaf lesbians, "designer disability," and the future of medicine

Julian Savulescu

With the completion of the human genome project, the genetic basis of
disease is becoming better
understood. Genetic tests for disabilities are increasingly becoming
available to allow couples with a
family history of genetic disease to select healthy offspring. But some
couples wish to select for
disability. Might there be good reasons for acceding to such requests?

Should we help to create disabled babies?

Should genetic tests be offered to couples seeking to have a child to
allow them to select for disability? Many would see deliberately creating
disabled babies as the most perverse manifestation of creating designer
babies but, in this week's BMJ, Julian Savulescu argues that there may be
good reasons for acceding to such requests.

... As rational people, we should all form our own ideas about what is the best
life. But to know what is the good life and impose this on others is at best
overconfidence - at worst, arrogance, he concludes.

My posting was followed by an objection by Alice Bachini. After quoting the paragraph immediately above, she wrote:

...but it's exactly right. To decide that a human
being should be deaf without consulting it first is
all these things. Also it's immoral. If a child wants
to be deaf later on, having experienced hearing, fair
enough; I just suspect that this outcome is extremely
unlikely to happen indeed.

How would you feel if your parents decided you were
going to be deaf before conceiving you? I'm sorry, but
deafness is a disability, not a special blessing,
otherwise we'd all be sticking hot pokers in our ears.
It seems tragic to me if deaf people can't get real
about this and get on with their lives. Political
correctness gone absolutely stark staring bonkers.

To which I replied:

My point was that this ethical question is a sharp test of one's
libertarianism. I believe the desire of disabled people (lesbian or not) to
have disabled children to be utterly degraded. Yet I agree with Savulescu
that they should have the right to do exactly that. The reason is that I
believe in anyone's right to do what does not harm others. And these people
are not harming the child or anyone else.

The disabled child has no cause of complaint against its parents. The
alternative to being born disabled was not to be born at all. If it is
better to live than not to exist at all, the child is indebted to its
parents for its life. (Disabled people have sued their parents in the
American courts for having been brought into the world. But it seems
anything can happen in the American courts. I doubt that the plaintiffs
could be successful.)

The case would be different if deafness were inflicted on a hitherto healthy
embryo: that would be a grave crime. I think this is what Alice has in mind,
since she says:

> To decide that a human
being should be deaf without consulting it first is
all these things.

The press release that I posted may not make it completely clear that
what's being talked about here is the selection of the desired embryo from a
number of embryos, not the modification of any of them. As the full article

some deaf couples
have expressed the desire to use prenatal genetic test­
ing of their fetus or in vitro fertilisation and
preimplantation genetic diagnosis to select a deaf
child. These choices are not unique to deafness.
Dwarves may wish to have a dwarf child. People with
intellectual disability may wish to have a child like

It would be different too if the child were born with a condition that
condemned it to live in agony (so that it really would prefer nonexistence).

Note that I'm not claiming that if you disagree, you're not a libertarian.



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