Experts and watchdogs say the birth of twins with genetically modified DNA represents precision medicine gone wrong.
Chinese researchers claim to have used CRISPR gene-editing technology to help a couple give birth to genetically modified twin girls, causing backlash among geneticists and health-tech observers who see the move as an ethical abuse.
Scientists reportedly used CRISPR to edit the infants’ DNA so that they would not be affected by HIV infection.
While that action may appear desirable, experts and advocates have warned that this sort of gene editing — germline editing, the effects of which will be passed down to the patients’ offspring — could spawn a genetically stratified society with untold consequences. What’s more, the experiment could threaten the babies’ health, experts have argued.
>> LISTEN: Why We Need to Discuss Gene Editing and Ethics
“If true, this amounts to unethical and reckless experimentation on human beings and a grave abuse of human rights,” Marcy Darnovsky, Ph.D., who heads the Center for Genetics and Society, said in a statement. “We wish the best for the health of these babies but strongly condemn the stunt that threatens their safety and puts the rest of us at risk.”
Chinese scientist He Jiankui reportedly led the gene-editing efforts to make the infants resistant to HIV. He told the Associated Press that he edited embryos for seven couples, though only one pregnancy has come to fruition so far.
The findings have not yet appeared in any academic journal and have yet to undergo independent verification. The researcher brought the project to light with the AP and an organizer of a major gene-editing conference.
The hospital where the births allegedly occurred, meanwhile, has denied having any hand in the experiment.
Hundreds of scientists in China have spoken out against the use of CRISPR gene-editing technology in this way. Even CRISPR’s co-inventors have called for scientists to halt all gene editing of embryos.
This past summer, the Center for Genetics and Society’s Darnovsky spoke with Healthcare Analytics News™ for a feature story on the ethics of gene editing, a conversation she then extended to our podcast, Data Book. Although the executive director praised gene editing’s medical potential, she cautioned against germline editing because of its questionable ethics.
Darnovsky and her colleagues repeated those criticisms today — but without the hypothetical cover that clouded our earlier conversations.
“He’s experiment violates the closest thing to a policy consensus we have. It would be illegal in dozens of countries,” Darnovsky said in a statement. “If this goes unchallenged, other rogue actors will soon offer wealthy parents purported genetic enhancements for their children. In a time of resurgent racism and socioeconomic disparity, the last thing we need is for some people and groups to consider themselves biologically superior to others.”
He and his team have argued that the move — perhaps a bold, new form of precision medicine — will benefit children. Each father in the study has HIV, and He claimed that the use of CRISPR gene-editing technology would protect their offspring. But Darnovsky and her colleagues said that argument is moot, as the kids wouldn’t have been affected by their father’s HIV status anyway.
Get the best insights in healthcare analytics directly to your inbox.
The Complicated Ethics of Gene Editing
Lost in the CRISPR Hype, a Gene-Editing Giant Is Fighting Back
Holding Public Algorithms Accountable