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A Chinese researcher claims to have created the world's first gene-modified babies, a movement bioethicist is the latest example of how gene-modification technology is progressing faster than regulation. If true, this experience could have global effects – and no law prevents it from happening in the United States or elsewhere.
It is still unclear whether researcher He Jiankui has really used a powerful gene editing tool called CRISPR case-9 to strengthen the ability of binoculars ("Lulu" and "Nana") to resist HIV. Nobody independently verified the data and nothing was published in a newspaper. Nevertheless, the acts alleged against Jiankui have already been widely denounced. "There was inadequate regulation and no serious control," says Arthur Caplan, a bioethicist at New York University. "It is ethically Swiss cheese, more holes than substance." He adds that it is particularly outrageous that the alleged edition is not intended to repair or repair a mutated gene. "It's a step forward on the road to eugenics," says Caplan. "One of the most important experiences that can be made in the history of eugenics is getting out of the ethical cliff without rope, protection or protection."
Now, Caplan predicts, the Chinese government will be motivated to respond and clarify its own policy on embryo genetic engineering. A common narrative is that lax Chinese regulations are to blame for these experiments, but that's not all. The Southern University of Science and Technology in Shenzhen, where Jiankui is a professor, said she was not aware of the research. Chinese health facilities have already distanced themselves from Jiankui and the country's National Health Commission has called for an investigation. And while countries around the world are investing in technology and research, there is no international framework governing this type of engineering. (The closest group we come to is a 2015 UNESCO Expert Panel calling for a moratorium on research.) A wealthy individual from any country could have privately funded a similar experience. .
In the United States, Congress forbids federal dollars to fund research on genetic modification of embryos, says Naomi Cahn, a professor at the George Washington University School of Law, specializing in reproductive technologies . But gene-editing embryos are not forbidden in themselves – and even if they were banned here, this could lead to reproductive tourism and wealthy couples traveling abroad for their baby designers. "This shows the need for regulators to rethink their approaches and develop more guidelines, both nationally and internationally," said Cahn.
And it's not just governments that will do an ethics test. Scientific journals will have to carefully determine their own standards for the publication of this type of research. "Journals will play an important role and should try to control future human experiments on embryos," says Caplan.
This is a difficult subject that raises so many delicate ethical questions. For example, such research is likely to provoke protests among anti-abortion activists in countries where there is more and more discussion of embryonic rights and the beginning of life. Other questions: What do we do about consent for the children who will be born? What about the right to life? What makes a good life? "We can not delay this much longer, because if the day does not arrive, researchers will soon get into these activities," said Cahn.
Caplan adds that it's not against all efforts to publish embryos. "I think if you want to do it, you should talk to society first," he says. "This kind of renegade science, focused on public relations, is not the way to go. It is equally likely that the future of gene editing will be stopped and encouraged. "
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