A professor at America’s premier college for deaf students has now proposed that curing deafness is a form of “cultural genocide” because deaf people who can hear would stop using sign language.
Gene therapy to treat and cure deafness in children is thus ethically wrong because it will limit the number of deaf people who can communicate with sign language.
The professor, Teresa Blankmeyer Burke of the philosophy and religion faculty at Gallaudet University in Washington, D.C., espoused her theory of “cultural genocide” earlier this month at Impact Ethics, a website covering bioethical issues.
“Members of the signing Deaf community argue that research which aims to eliminate or cure deafness is a form of cultural genocide,” Burke explains. “The argument goes like this: the use of gene therapy to cure hereditary deafness would result in smaller numbers of deaf children. This, in turn, would reduce the critical mass of signing Deaf people needed for a flourishing community, ultimately resulting in the demise of the community.”
Burke argues that people simply assume that life is better if you are able to hear sounds — that possessing a full complement of basic senses is better than missing a really important one.
“This bias of Hearing culture can be seen in the normative claim that it is better to be a member of the dominant, mainstream Hearing cultural community than to be a member of the non-dominant Deaf cultural community,” Burke writes.
“This claim is frequently stated but rarely argued for,” she says, and “this assumption about the typical being more valuable that the atypical is problematic and it requires examination.”
Suffering from hereditary deafness “confers on deaf children a Deaf way of being in the world” with “advantages” that “are not always obvious to members of the Hearing community.”
While cochlear implant surgery allows deaf people to choose to remove the implants and become deaf, gene therapy offers deaf children only the chilling prospect of permanent hearing ability.
You can never turn back to the sound void of deafness.
“Deaf children who receive gene therapy to treat their deafness lose this choice permanently, most likely without having had any input into the decision to change their genetic identity — a procedure that fundamentally changes their potential life experiences from those of deaf persons,” Burke laments. “This different identity is directly linked to their altered genetic make-up.”