About Us, Without Us: Inclusion in the Threat of Eradication

The development of CRISPR, a cut-and-paste gene editing technology, has pushed discussions of germline gene “therapy” from speculation about how this might affect us sometime in the future to urgency, leading to the International Summit on Human Gene Editing held this week in Washington DC.

Germline modification of the human genome goes a step beyond what most people think of as genetic therapy, which alters the genome of one individual, to altering the genetic material of that individual and all of that individual’s descendants. If you happen to belong to a community, as I do, that has at its core a group of people with a cluster of genetic variants that contribute to the very nature and existence of said community, this could mean the eradication of a particular population and social community.

I’m speaking of signing Deaf communities, which have developed visual-tactile languages in response to the embodiment of deafness. Signed languages have persisted (despite numerous attempts to extinguish them) in large part because of native use by multi-generational deaf families who have passed this knowledge on...