Russian biologist Denis Rebrikov has located five deaf couples who want to use CRISPR gene editing to ensure that their babies will have the ability to hear. The controversy around gene editing in human embryos has been in the news of late.
Recently, Chinese biochemist He Jiankui attempted to create HIV resistant embryos. He reportedly brought some of those embryos to term and he even claimed successful births. There was, however, no consent from the Chinese government.
Naturally, his work spawned a lot of controversy and criticism in the scientific and ethics communities.
Rebrikov, who intends to petition the proper Russian authorities in a “couple weeks,” may have a stronger case in his gene editing to prevent deafness. Many people in Western Siberia lack a letter in position 35 of the GJB2 gene in their DNA. Therefore, Rebrikov has found couples who have genetic similarities to this region.
Each parent in the five couples carry mutations in the GJB2 gene. This means that there is no way to avoid deafness in their offspring. But by using CRISPR to edit one copy of the GJB2 gene in a fertilized embryo, the child wouldn’t be born deaf, Rebrikov proposes.
‘A Compelling Medical Need’
The controversy still abounds. The ethical and medical concerns associated with gene editing are at the forefront of this issue. But in this particular case, it also comes down to the fact that deafness isn’t terminal. Experts released several criteria in a November statement, including “a compelling medical need” and “an absence of reasonable alternatives” for CRISPR consideration.
Many in the field believe that gene editing should save lives. “The first human trials should start with embryos or infants with nothing to lose, with fatal conditions,” Julian Savulescu, a biochemist at the University of Oxford says. “You should not be starting with an embryo which stands to lead a pretty normal life.”
Determining what constitutes “normal life” is subjective. But if it means to enjoy a healthy, happy existence, there’s no reason that someone who is deaf can’t live a normal life. Many people in the deaf community believe that being deaf isn’t a disability and see it as a personal experience. For many, it’s a cultural issue.
Everything about Rebrikov’s plan is complicated, from the socio-political to the scientific implications, which is why researchers are thinking twice. “Rebrikov is definitely determined to do some germline gene editing, and I think we should take him very seriously,” Gaetan Burgio, CRISPR expert at the Australian National University says. “But it’s too early; it’s too risky.”
As research continues and a better understanding of gene editing comes to light, then, those who may need it can make better decisions about what is best for their situation.