GESTIÓN EN SALUD PÚBLICA: BioEdge: Is it ethical for deaf parents to choose to have deaf children?

BioEdge: Is it ethical for deaf parents to choose to have deaf children?

Bioedge

Is it ethical for deaf parents to choose to have deaf children?

by Michael Cook | 29 Sep 2019 |

^{'The Country of the Blind'}

H.G. Wells, with his acute sense of ethical dilemmas in science, wrote a short story in 1904 about disability, “The Country of the Blind”. In it, an explorer discovers a remote valley in the Andes where everyone is blind. Thinking himself superior, he tries to teach the villagers about sight, but they scoff at him. What’s more, in many respects he is inferior. Eventually, to be allowed marry the girl he loves, he agrees to have his eyes plucked out. But his courage fails him at the last minute and he flees.

While blindness does not have defenders as a normal way of life, deafness does.

There is a growing body of literature to support the right of deaf parents to use pre-implantation genetic diagnosis (PGD) to select for deaf children. Jacqueline Mae Wallis, a philosopher at the University of Bristol (UK), contends in the journal Medicine, Health Care and Philosophy that this is morally permissible.

“Selection for deafness, with deafness understood as mere-difference and valued for its cultural identity, need not necessitate impermissible moral harms,” she writes.

For most people this sounds implausible, but she counters the most common objections handily.

Will the child be harmed? Not necessarily. It might even be good for a child to be deaf. They will be able to learn a signed language; they will be more sensitive to “enhanced visual and vibrational qualia experiences”.

Will it restrict future life plans? Not necessarily. “Deaf advocates can reply that being deaf opens future life plans that being hearing cannot, and that families who seek to choose deafness for their child do not view this as a limitation.” In fact, a hearing child born to deaf parents might find life more difficult.

Will it introduce harm into the world? Not necessarily. “Every reproductive decision will plausibly introduce some harm into the world,” Wallis writes. “Every child’s life will include some limited opportunities and suffering, determined by climate, politics, socioeconomic status, biology, etc

Much of the author’s argument flows from the insights of disability theorist Elizabeth Barnes. She argues that disability is merely difference: “having a disability makes you physically non-standard, but it doesn’t (by itself or automatically) make you worse off.” And as Wallis points out, “Contrary to what the bad-difference view suggests about their disabilities, most people with disabilities do not describe themselves as suboptimal, deficient, dysfunctional, etc. but rather as healthy, whole, functional, etc.”

Therefore, she concludes in this provocative article, “some families may have good, morally-grounded reasons for selecting genetic deafness for a future child.” H.G. Wells would have approved.

Michael Cook is editor of BioEdge

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