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If someone wants to create gene-edited babies, who would stop them?

If someone wants to create gene-edited babies, who would stop them?


The legal framework around gene-editing babies is murky at best

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Illustration by James Bareham / The Verge

A Chinese researcher claims to have created the world’s first gene-edited babies, a move bioethicists say is the latest example of how gene-editing technology is advancing faster than regulation. If true, this experiment could have worldwide effects — and there’s no law that prevents it from happening in the US or anywhere else.

It’s still unclear whether researcher He Jiankui truly used a powerful gene-editing tool called CRISPR/Cas-9 to enhance the ability of twin girls (“Lulu” and “Nana”) to resist HIV. Nobody has independently verified any data and nothing has been published in a journal. Still, Jiankui’s alleged actions have already been widely denounced. “There was inadequate regulation and no serious oversight,” says Arthur Caplan, a bioethicist at New York University. “It’s ethically Swiss cheese, more holes than substance.” Especially egregious, he adds, is that the alleged editing was not to repair or fix a mutated gene (that is, fix a genetic disease like Tay-Sachs) but to enhance a capacity. “That’s taking a step down the road of eugenics,” Caplan says. “For one of the most important experiments you could do in the history of eugenics, we’re stepping off the ethical cliff with no ropes or safeguards or protections.”

“This kind of renegade, PR-driven science is not the way to go.”

Now, predicts Caplan, there will be pressure on the Chinese government to respond and clarify its own policy toward genetic engineering of embryos. One common narrative is that lax Chinese regulations are to blame for these experiments, but that’s not the entire story. Southern University of Science and Technology in Shenzhen, where Jiankui is a professor, has stated that it wasn’t aware of the research. Chinese health institutions have already distanced themselves from Jiankui, and the country’s National Health Commission has asked for an investigation. And though countries around the world are investing in the technology and research, there is no international framework governing this type of engineering. (Perhaps the closest we’ve come is a 2015 panel of UNESCO experts calling for a moratorium on the research.) A wealthy individual in any country could have privately funded a similar experiment.

In the US, Congress prohibits federal dollars from funding research into genetically editing embryos, says Naomi Cahn, a professor at George Washington University Law School who specializes in reproductive technology. But gene-editing embryos itself is not prohibited — and even if it was banned here, it could lead to wealthy couples traveling abroad for their designer babies. “This shows the need for regulators to start rethinking approaches and how to develop more guidelines, both on a domestic and international level,” says Cahn.

And it’s not just governments that will be doing an ethical gut check. Scientific journals will need to carefully determine their own standards for publishing this type of research. “Journals will play a big role and should try to control future human experiments with embryos,” Caplan says.

It’s a difficult topic that raises so many tricky ethical issues. For example, research like this is likely to be met with protest from anti-abortion activists in countries where there are more discussions about embryonic rights and when life begins. Other questions: What do we do about consent when it comes to the children who will be born? What about right-to-life? What makes a good life? “We can’t put this off much longer because if the day hasn’t actually arrived, it’s coming soon when researchers will be engaging in these activities,” Cahn says.

Caplan adds that he’s not against all efforts to edit embryos. “I just believe that if you’re going to do it, you should be talking with society first,” he says. “This kind of renegade, PR-driven science is not the way to go. It’s as likely to shut down the future of gene-editing as it is to encourage it.”