Bioethics Blogs

5 Reasons Why We Need People with Disabilities in the CRISPR Debates

This article was cross-posted on Disability Remix, the blog of the Paul K. Longmore Institute on Disability at San Francisco State University.

Maybe you haven’t heard of CRISPR-Cas9. To be honest, if I hadn’t previously worked at the Center for Genetics and Society, I probably wouldn’t have heard of it either. It’s a new genetic technology that brings modification of the human germline closer in reach than ever before.

Driven by the promise of allowing parents to avoid passing on incurable genetic diseases to their offspring, the use of CRISPR to engineer human embryos presents serious risks with particularly strong implications for people with disabilities—in the present and future. It’s been getting plenty of press. And yet, as someone who tries to stay up to date constantly with what’s trending in the disability social media scene, it has seemed to me that CRISPR has been more or less absent.

Why aren’t people in the disability community talking more about this?

Why should people with disabilities have to keep spending their time justifying their existence rather than just enjoying it at present?

An event poster for Future Past in 2013 is shown, with purple clouds, and a DNA helix forms the base of a signpost with two directions: future and past.I recall a conference I organized with the Longmore Institute in 2013, “Future Past: Disability, Eugenics, and Strange New Worlds.” Disability studies scholar and activist Marsha Saxton began her panel by sharing a memory of talking with a genetics counselor while contemplating getting pregnant. The counselor exclaimed, “Gee, if I’d have known Spina Bifadas turned out as well as you, I would not have recommended selective abortion as much as I’ve done!”

Similarly, a conversation comes to mind that I had with another disability activist, who previously focused on the neo-eugenic uses of genetic technologies but left because she was burnt out.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.