Home / Science / The legal framework around babies who edit genes is murky at best.

The legal framework around babies who edit genes is murky at best.



A Chinese researcher claims to have created the world's first babies with genetic issues, a move that bioethicists say is the latest example of how gene-editing technology is moving faster than regulation. If true, this experiment could have global effects, and there is no law to prevent this from happening in the United States or anywhere else.

It is still unclear whether researcher He Jiankui actually used a powerful gene-editing tool called CRISPR cas-9 to improve the ability of twin girls ("Lulu" and "Nana") to resist HIV. No one has independently verified any data and nothing has been published in a journal. Even so, Jiankui's alleged actions have already been widely denounced. "There was inadequate regulation and there was no serious supervision," says Arthur Caplan, a specialist in bioethics at the University of New York. "It's ethically Swiss cheese, more holes than substance." Especially atrocious, he adds, is that the supposed edition was not to repair or repair a mutated gene (that is, to correct a genetic disease such as Tay-Sachs) but to improve capacity. "That is taking a step down the path of eugenics," says Caplan. "For one of the most important experiments you could do in the history of eugenics, we are coming out of the ethical cliff without strings or safeguards or protections."

Now, predicts Caplan, there will be pressure on the Chinese government to respond and clarify its own policy towards embryo genetic engineering. A common narrative is that China's lax regulations are the culprits of these experiments, but that is not the whole story. The University of Science and Technology of the South in Shenzhen, where Jiankui is a professor, has stated that he was not aware of the investigation. Chinese health institutions have already distanced themselves from Jiankui, and the country's National Health Commission has requested an investigation. And although countries around the world are investing in technology and research, there is no international framework that regulates this type of engineering. (Perhaps the closest thing we have come to is a 2015 panel of experts from UNESCO calling for a moratorium on research). A rich person in any country could have privately financed a similar experiment.

In the USA The US Congress prohibits federal dollars from funding research for genetic embryo editing, says Naomi Cahn, a professor at the George Washington University School of Law who specializes in reproductive technology. But gene-editing embryos themselves are not banned, and even if they were banned here, it could cause reproductive tourism and wealthy couples to travel abroad to buy their designer babies. "This shows the need for regulators to start rethinking approaches and how to develop more guidelines, both nationally and internationally," says Cahn.

And it is not only the governments that will carry out an ethical control. Scientific journals should carefully determine their own standards for publishing this type of research. "Journals will play an important role and should try to control future human experiments with embryos," says Caplan.

It is a difficult issue that raises so many difficult ethical questions. For example, investigations such as this one are likely to meet with protests from anti-abortion activists in countries where there are more discussions about embryo rights and when life begins. Other questions: What do we do with consent when it comes to the children that will be born? What happens to the right to life? What makes a good life? "We can not delay this for much longer because if the day has not arrived, it will arrive soon when researchers participate in these activities," says Cahn.

Caplan adds that he is not against all efforts to edit embryos. "I just think that if you're going to do it, you should first talk to society," he says. "This kind of renegade, science driven by public relations is not the way to go, it's as likely to close the future of gene editing as it is to encourage it."


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