A Gallaudet philosophy professor, Dr. Teresa Burke, wrote an article about gene therapy to “cure/eliminate” hereditary deafness — warning that it can be a threat to the Deaf community/culture.
In the article, she mentions there are already discussions within the Deaf community that scientific research which aims to eliminate or cure deafness is a form of cultural genocide — since if hereditary deafness is cured, there would be a smaller pool of deaf children and that’d lead to our demise.
Dr. Burke said researchers often dismiss this notion — they say their efforts to cure deafness is not equivalent with “a call to eliminate” deaf communities/deaf people. Researchers also say if they support gene therapy, it does not mean they support discrimination against Deaf people.
Dr. Burke then challenges the researchers — saying they must consider the perspective that deaf people’s genes are connected with their identity and language, as it is passed down to deaf children.
She pointed out that a majority of Deaf children are born to hearing parents and most of the children do not have a choice on learning sign language.
Dr. Burke said there is a bias in “Hearing culture” that it is “better” to be a part of the “Hearing cultural community” than to be in the Deaf community.
Now about gene therapy — Dr. Burke argues that it is different from cochlear implant surgery because with CI, deaf children are still deaf — and they could decide later to not use the devices. But with gene therapy, deaf children lose that choice permanently and it will “fundamentally change their potential life experiences.”
Dr. Burke compared it with doctors doing limb-lengthening surgery on people who were born short or doing genital surgery on children who were born with an “ambiguous genitalia.” She warned that such surgeries have a deep impact on the well-being of children.
Dr. Burke then challenged researchers/scientists to consider the potential impact of identity loss on children with hereditary deafness by curing them with gene therapy.
Gene Therapy Article : http://bit.ly/2mt1Fy7