March 5, 2024

Imagining designer deaf babies

Children of the deaf oppose any kind of pre-natal diagnosis

Should deaf people be able to create deaf designer babiesThought experiments
with new technologies, and especially new reproductive technologies,
are grist for the bioethics mill. Few scenarios are more provocative
than designer deaf children — genetically engineering children so
that they will join the deaf community.

This has been
documented at least once. In 2002 the Washington Post Magazine
interviewed a lesbian couple who had produced a partially deaf child
by getting a deaf friend to provide sperm. They refused a hearing aid
and raised the child as if he were totally deaf. He could make a
decision about a hearing aid when he was older, they said. In the
ensuring uproar, two opposing views emerged. Many deaf people believe
that they are a linguistic minority, not people with a disability.
Most hearing people believe that it is a disability.

Obviously deafness
makes life more difficult for a child, even if he or she feels at
ease in a deaf community. But some deaf couples respond that they
have a right to exercise their reproductive options and that the
wider community should respect the decisions that they make. As the
Oxford utilitarian bioethicist Julian
Savulescu wrote
about this issue: “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.”

Since deaf parents
face difficulties in raising a hearing child, there has apparently
been quite a bit of discussion in the deaf community about the merits
of using pre-natal diagnosis (PND) and pre-natal genetic diagnosis
(PGD) to have deaf children. To select a deaf child with PND, a
couple has to abort a hearing child; with PGD, they only have to
discard embryos.

A recent
contribution to this debate comes in the latest issue of the Journal
of Medical Ethics
. A group of Australian researchers interviewed
66 hearing children of deaf parents to find out what they thought
— since they are at home in both worlds. They found that 77% were
opposed to selecting children for either hearing or deafness. Like
many others associated with the deaf community, they appear to oppose
these technologies because they fear that they will eventually be
used to eliminate deaf people. However, hearing children still regard
the deaf community more as an expression of cultural diversity than a
disability. ~ Journal
of Medical Ethics, December


Michael Cook
designer babies