Wednesday, November 28, 2018
From The Verge:
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.”
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 reproductive tourism and 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.
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