Gene editing may soon be able to cure inherited deafness. Here’s why some deaf parents oppose it

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In June, researchers at Boston Children’s Hospital, Harvard and MIT announced that, using mice, they figured out how to use the technology to temporarily “correct” a mutation in the TMC1 gene, which can cause deafness in babies. The work is a monumental step toward reversing hereditary deafness in people with a single injection.

But all of that builds on the assumption that deafness needs a cure. It does not. Though our dominant cultural view of deafness needs a fix.

Most people view deafness and other disabilities using the medical model, through which any deviation from the norm is considered a problem to be rooted out. But we deaf people see ourselves through the social model, in which societal barriers are the source of disability. We consider ourselves to be part of a vibrant cultural and linguistic minority group with American Sign Language, Cued American English (via Cued Speech) and other forms of visual communication at its center.

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This new CRISPR 2.0 study, evidently conducted using the medical-model view of deafness, exemplifies a broader problem in scientific research… studies don’t take into account the systemic social issues at their root.

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Since applications of CRISPR in humans aren’t without risks, I hope that researchers will take a more nuanced approach in future studies that is informed by this growing body of research.

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