Deafness by Design

It’s an old story, but it’s in the news again: Activists are claiming there is a human right to intentionally create deaf babies. BioEdge has the latest report :

“There is a small minority of activists who say that there is a cultural identity in being born deaf and that we should not destroy that cultural identity by preventing children from being born deaf.” She argued that if other parents are allowed to create “designer babies”, then deaf people should also be allowed to do so, as well.

But there is another side to these allegations of eugenics, as the outraged response of the British Deaf Association showed. A contemptible exaggeration, fumed Dr Steve Emery. Deaf people simply want access to the same rights as hearing people. Deaf activists view themselves not as disabled, but as a linguistic minority. All they want is to have the same rights to fertility treatment as other minorities, such as blacks or gays.

Paradoxically, the BDA contends that privileging hearing is eugenicist. “And if [embryo screening] can be available to ensure the baby is hearing, the next step could be: why not ensure it can also be blue eyed, blonde, straight, etc?” asks Dr Emery.

The deaf community in the UK is gratified by advances in deaf culture: British sign language has been officially recognised as a language by the government and 400,000 hearing people are learning to sign. But it also seems painfully aware that these hard-won achievements could be lost through depopulation if embryos are screened for deafness. The BDA points to disappearance of Down syndrome children from the community, despite the increasing number of older mothers. IVF and embryo screening may be widely accepted but they are multiplying the number of ethical dilemmas faced by governments.

It seems there are really two issues here: On the one hand, human embryos shouldn’t be “screened for deafness” and then “discarded”—deafness, like Down syndrome, doesn’t negate human dignity or make life not worth living for a person—even in the embryonic stage—who is deaf or has Down syndrome. On the other hand, human embryos shouldn’t be intentionally created to possess a disability on the grounds that disability isn’t really disability but is a “cultural identity” or “linguistic minority”—preferring hearing over non-hearing is not prejudicial like preferring white over black. The one really does have to do with authentic human flourishing, and the other has nothing to do with it at all.