Disability advocacy community both scared and excited about CRISPR gene editing

Credit: Molly Ferguson
Credit: Molly Ferguson

While still highly theoretical when it comes to eliminating disabilities, gene editing has drawn the attention of the disability community. The prospect of erasing some disabilities and perceived deficiencies hovers at the margins of what people consider ethically acceptable.

“People are understandably very scared of it, of the many different roads it could take us down as a society,” said [bioethics researcher] Meghan Halley.

Professor Halley’s middle child, Philip, was born with multiple anomalies of his gastrointestinal system. In addition, Philip has had a succession of health complications, including a stroke just before age 2, leading his doctors to suspect a still-unidentified genetic disorder.

Families like hers, Professor Halley said, offer good examples of “very ripe cognitive dissonance” around the topic of inheritable gene editing. As a mother, she said, she would do anything to prevent the pain her son has been through.

Related article:  Video: As gene editing hits the farm, how will agriculture change?
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Yet she is aware of the inconsistency between that desire and her unwillingness to “do anything that would take away him, take away who he is,” she said. “And he is who he is partly because of the challenges he has faced.”

Professor Halley acknowledged the inherent tension between the huge benefits that gene-editing technology could bring in preventing serious diseases and disabilities for which there is no treatment, and what she calls the “potential risk of going down a road that feels uncomfortably close to eugenics.”

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