CRISPR gene editing roils public discussion over ‘what it means to be disabled’

Credit: Marina Muun
Credit: Marina Muun

The gene-editing technology CRISPR promises enormous potential as a therapeutic for curing illnesses, including potentially devising new vaccines. 

But the disabled community is becoming increasingly concerned about the possibility of using CRISPR to eliminate so-called defective genes in the embryo. This raises profound questions about what it means to be disabled and the need to embrace diversity. Sandy Sufian is a disability studies scholar and historian of medicine at the University of Illinois at Chicago. 

[Sufian:] There are serious debates going on in bioethics circles about using CRISPR for “embryo editing,” that is, germline editing. Behind this goal lies a commonsense assumption that it is invariably a good thing to get rid of “bad genes.” “Of course,” proponents argue, “why wouldn’t we want to eliminate all disease?”

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By contrast, critics argue that proponents of germline editing are following a utopian future that is essentially eugenic. The whole idea of eugenics historically was to “improve” the human race by promoting the reproduction of white, Western, wealthy, healthy, young, able-bodied and non- immigrant populations. 

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Germline CRISPR uses methods different from eugenic measures in the past, but it nonetheless disallows people with genetic differences from coming into the world, while simultaneously claiming to “improve” the human race by eliminating genetic diseases in future generations.

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