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The ethics of disability is complex. Ordinarily, you’d think that if something is wrong, medically, and we have the means to fix it (as long as it’s not a Pyrrhic fix), then there is an ethical imperative to do so.

In the case of deafness, this principle turns out to be not so simple. A former MP, Jackie Ballard, says parents, through genetic screening, should be allowed to choose embryos that will develop into deaf children if they so wish. Deaf parents-to-be want the right to discard normal embryos in favour of ones that are deaf. To these people, deafness is less about having a disability and more about being part of a “linguistic minority.” Inflammatory language aside (nobody is proposing, as Tomato Lichy in the Guardian implies, “aborting” deaf children), there is a mess here of what parents want, medical ethics, and the “right” to be healthy or have access to medical intervention–especially if you, as the person most affected, are not in a position to make your own desires known.

In our new Otolaryngology Faculty, Douglas Sidell and Nina Shapiro of the UCLA School of Medicine highlight a paper addressing the “spectrum of customs and values maintained by the deaf community” (read the free evaluation). This discussion of the ethics involved in parents of deaf children not pursuing cochlear implantation, or the use of hearing aids, is noteworthy because, while historically deaf parents’ rights to refuse treatment for their children have been protected, the case study here concerns two deaf children of hearing parents.

Does that make a difference, ethically?

I don’t know, and unfortunately I don’t have access to the paper. From the abstract,
“The ethics of parental rights to refuse hearing rehabilitation are complex and strikingly context-dependent.” The authors warn that a “comprehensive appreciation of the medical, practical, and legal issues is crucial” before any medical intervention is made. What’s your opinion?