Five deaf Russian couples may undergo gene editing to prevent deaf children
[Transcript] “New Scientist” reported that there are five deaf Russian couples who want to receive CRISPR gene editing so their children will not be born deaf.
A Russian scientist, Denis Rebrikov, who works at the country’s largest fertility clinic, plans to apply for permission from Russian authorities to perform gene editing on the couples.
The couples have a missing DNA letter in the 35th position of a gene called GJB2 that causes deafness. If both parents have mutations in the gene, the child will be deaf. All the couples (10 people in total) have this recessive gene, which means their children will also be born deaf.
The article did not mention the reason why the couple doesn’t want their children to be born deaf. Rebrikov said he sought out the couples. It is not clear how he found the couples or how he got their consent to be a part of this process.
Rebrikov views deafness as a very serious health condition. He said he feels that the request for genetic editing is “clear and understandable to ordinary people.”
Rebrikov will have to convince authorities that his gene editing plans to prevent deafness will not put a risk to the children’s “normal” development.
CRISPR gene editing has not been proven to be safe. Last year a scientist in China, He Jiankui, made a shocking announcement that he performed gene editing on twin babies with the goal of having them be resistant from HIV. Many scientists around the world condemned him because it was not guaranteed that the editing would not have unintended effects on the girls’ growth and development.
This raises existential concerns for the Deaf community, as there have been discussions in the past that gene editing could lead to the end of Deaf culture.
Gallaudet University philosophy professor Dr. Teresa Blankmeyer Burke wrote in an article in “Impact Ethics” in 2017 that there is a “bias in Hearing culture 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.”
She said there is a big difference between genetic editing and cochlear implants — in that children with CIs are still deaf. They can decide to join the signing Deaf community. But those who are genetically edited lose this choice permanently.
Dr. Burke and a professor of bioethics from the University of New South Wales, Jackie Leach Scully, wrote another article that was published today, also in “Impact Ethics,” in response to the Russian couples story.
Burke and Scully questioned if “deafness is a ‘serious’ condition that justifies heritable genome editing?” They explained that there are deaf people who prefer to have deaf children.
They said it can be argued that the Russian deaf couples are “uniquely well placed to know all about the disadvantages of living with (deafness),” but pointed out that there may be many other factors that influenced their judgments.
Burke and Scully raised a concern that the gene editing could increase social injustice and marginalization towards deaf people — that the public could view deafness as a choice and pressure deaf people to use genetic editing, especially if they make requests for government support for social services.
So, this is clearly a new step towards the day there is a “cure” for deafness. The links to the articles are below in the transcript.
New Scientist: https://www.newscientist.com/article/2208777-exclusive-five-couples-lined-up-for-crispr-babies-to-avoid-deafness/
Dr. Burke and Scully: https://impactethics.ca/2019/07/09/russias-crispr-deaf-babies-the-next-genome-editing-frontier/
Dr. Burke (2017): https://impactethics.ca/2017/03/02/gene-therapy-a-threat-to-the-deaf-community/?fbclid=IwAR31wbKu9td_YonyaR58oeSEzrbDOCpdKwHtbB0lY6n29sMslmu-Vyr_lTI
Dr. Burke’s image is a screenshot from this video: https://www.youtube.com/watch?v=Xn_GITH-GEI———
Gallaudet University: [gallaudet.edu]