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Culturally destructive science: Editing out the genetic mutation that causes deafness and the implications on Deaf culture

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Deaf advocates at UW emphasized the impacts insensitive research has on the Deaf community who does not benefit from the research but at the same time bears the responsibility of having to use the technology.

Denis Rebrikov’s research began with disabling the gene that allows HIV to enter cells in embryos, to be implanted in HIV-positive mothers to reduce the risk of them passing the HIV virus onto their baby in utero.

Rebrikov’s work gained international attention when he started editing genes in eggs donated by women to eliminate the genetic mutation that causes deafness.

Using donated eggs from hearing women who do not have the genetic mutation, Rebrikov planned to edit the gene to allow deaf mothers the opportunity to give birth to hearing children. 

He also states that the goal of the experiments is to gain a better understanding of the potentially harmful “off-target” mutations that can occur from gene editing in embryos. This would help his research with HIV resistant embryos.

Rebrikov’s intention is to allow deaf couples to give birth to hearing children and to learn more about the potentially harmful effects of gene editing, but the impact is what some in the Deaf community are calling “cultural genocide.

“They will develop their own culture, their own language, their modes of thinking, their ways of interpreting and being in the world based on being visually attuned to the world,” Lance Forshay, senior lecturer and ASL language director signed.

Hearing people place such a high value on the sense of hearing and Forshay states that is not a medical perspective, it is a cultural perspective. 

Similar deaf-focused research has been conducted at the UW. In 2016, two sophomores at the UW were awarded a $10,000 Lemelson-MIT Student Prize for their “signing gloves” called “SignAloud.” These gloves were equipped with technology that would record hand movements, send that data wirelessly to a computer, and then verbalize the movements through a speaker. 

“They got on the news and they actually were asked in an interview ‘What is the sign for America?’ They made an entirely inappropriate sign that was completely wrong actually,” Forshay signed. 

These students made no effort to consult with anyone within the Deaf community or within the linguistics department about this research and instead shared incorrect information. After receiving a lot of complaints from people within the Deaf community and the linguistics department, Forshay and a few others within the linguistics department decided to write a letter to the UW. 

Within this letter, they addressed the culturally insensitive and blatantly incorrect research and technology. They emphasized the impacts this kind of research has on the Deaf community who does not benefit from this research but at the same time bears the responsibility of having to use the technology.

When there is research on a particular oppressed group and the group is not involved in the process at all, it leads to the question of purpose. 

Research targeting the Deaf community has been around for centuries. According to Forshay, in the 18th, 19th, and 20th centuries, deaf people would have blunt and sharp objects forced into their ears and chemicals poured into their ears to try and make them hear. With more modern technology, there are cochlear implants and gene editing.

The hearing industry is a big business; the National Institute on Deafness and Other Communication Disorders has an annual budget of $459 million toward research in hearing and other methods of communication. The cochlear implant industry market size was valued at $1.5 billion in 2018 and is expected to grow to $3.4 billion by 2026. 

“It’s fascinating how much money hearing people want to put into this notion of trying to fix or eliminate them,” Forshay signed. 

D Center manager Lesley Ellis agrees that it’s vital to have research and data that aim to improve the lives of deaf and disabled people but when research is being done to eliminate a group of people that are deemed undesirable by societal norms, that crosses the line.

“Are we doing it in order to give disabled people and deaf people the best access to the world that we want them to have?" Ellis said. “Or are we doing it because we don’t want them to exist?” 

Ellis urged that research institutions have specific educational programs to educate people in the field on the sociopolitical issues behind their research. To look at the bigger picture of the people that are and will be impacted. 

Forshay also acknowledged the potential of some of this new technology and research but stressed the importance of including the impacted communities in the research. Hearing people are making decisions in their scientific works through ignorance of Deaf culture and sign language.

“What I think we need to see in the scientific world is more cultural competency and think about what they are doing and how scientific work can actually be culturally destructive,” Forshay signed. 

Reach reporter Iseabel Nance at Twitter: @iseabel

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