Claim of Genetically Modified Babies: If true, a grave abuse of human rights

Chinese scientist Jiankui He has announced the birth of twin girls whose DNA he claims to have altered using the gene-editing technique CRISPR.

“If true, this amounts to unethical and reckless experimentation on human beings, and a grave abuse of human rights,” said Marcy Darnovsky, Executive Director of the Center for Genetics and Society, a public interest organization that brings social justice and human rights perspectives to human biotechnologies.

“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,” Darnovsky said. “Throwing open the door to a society of genetic haves and have-nots undermines our chances for a fair and just future.”

“Policy makers, scientists, and public interest groups around the world have called for a moratorium or ban on altering the genes of future children and generations,” Darnovsky continued. “He’s experiment violates the closest thing to a policy consensus we have. It would be illegal in dozens of countries.”

Though there has been no independent confirmation of the claim, He launched what amounts to a public-relations campaign to publicize it, complete with promotional YouTube videos in English. The timing of his announcement, on the eve of the Second International Summit on Human Genome Editing in Hong Kong, seems deliberately calculated to preempt that high-profile scientific meeting.

China is effectively a co-sponsor of the Hong Kong Summit, through the Academy of Sciences of Hong Kong. But it is unclear whether the Chinese government authorized He’s experiment. The procedures were apparently conducted in secret, and He has reportedly applied for a patent on them. He is chairman and co-founder of Direct Genomics, a DNA sequencing company in Shenzhen.

“This unscrupulous experiment overrides both the summit and the public deliberations on human germline modification that have been widely called for,” said Katie Hasson, CGS’s Program Director on Genetic Justice. “It is imperative that the scientists gathered in Hong Kong, and the Chinese authorities, clearly denounce this act of scientific grandstanding. The actions of a few rogue scientists should not derail the urgently necessary process of democratic deliberation. We need to put in place enforceable regulations now to stop reproductive gene editing while this public conversation takes place.”

Jiankui He’s recklessness is underscored by his own self-justification. As He acknowledged, though the babies’ biological father is infected with HIV, this would not prevent him from having healthy children. The embryos created with his sperm, and subjected to the dangers of gene editing, were not affected by HIV or AIDS. The attempted to disable a gene in order to produce future resistance to HIV was apparently done to provide a proof of principle. But some reports suggest that the experiment actually did not work as well as He claims: in one twin, only one copy of the gene was changed and there were signs of mosaicism.

“It’s hard to imagine a graver abuse of a child,” Darnovsky said. “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 socio-economic disparity, the last thing we need is for some people and groups to consider themselves biologically superior to others.”