Teresa Blankmeyer Burke argues for inclusion and communication accessibility in bioethics discussions that threaten to harm the signing Deaf community.
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 to other deaf people not born into this linguistic community.
If the causes of multi-generational deafness are eradicated through techniques like CRISPR, what becomes of the signing deaf community? Is there a social obligation to consider the number of people who would have been born deaf and the impact of their absence on these communities? Do signed language communities become a quaint, exotic artifact, existing by the sheer will of linguistic hobbyists and a few members who, for whatever reason, cannot acquire species-typical hearing through biomedical intervention?
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.