Moratorium On Gene-Edited Babies Urged By Leading Geneticists : Shots – Health News – NPR

There was an uproar in 2018 when a scientist in China, He Jiankui, announced that he had successfully used CRISPR to edit the genes of twin girls when they were embryos. Prominent scientists hope to stop further attempts at germline editing, at least for now.

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There was an uproar in 2018 when a scientist in China, He Jiankui, announced that he had successfully used CRISPR to edit the genes of twin girls when they were embryos. Prominent scientists hope to stop further attempts at germline editing, at least for now.

Mark Schiefelbein/AP

A group of prominent scientists and bioethicists is calling for a global moratorium on any new attempts to bring gene-edited babies into the world.

“We call for a global moratorium on all clinical uses of human germline editing — that is, changing heritable DNA (in sperm, eggs or embryos) to make genetically modified children,” the 18 scientists and bioethicists from seven countries write in an article published Wednesday by the journal Nature.

The call was prompted by the announcement last year by a scientist in China, He Jiankui, that he had used the powerful new gene-editing technique CRISPR to create the world’s first gene-edited babies. He says he edited the twin girls’ DNA when they were embryos to try to protect them from the AIDS virus.

The announcement was widely condemned as unethical and irresponsible. It also prompted an intense debate about whether more could have been done to have stopped the scientist — and should be done now to try to prevent any more researchers from going rogue.

In response, the new coalition of scientists and bioethicists proposes that every country declare a moratorium, perhaps for five years, on scientists trying to create babies whose DNA has been edited.

“We all believe that we shouldn’t be going forward,” Eric Lander, who heads the Broad Institute at Harvard and MIT, tells Shots “And starting off by saying we should have a moratorium brings an important clarity to the thing.”

The scientists stress that they are not advocating a “permanent ban” or any restrictions on basic research that could eventually lead to the creation of gene-edited babies in the future. Instead, a global moratorium would allow for the creation of an “international framework” for how best to proceed responsibly.

A pioneer in research on the human genome and head of the Broad Institute in Cambridge, Mass., Eric Lander is among 18 prominent scientists and bioethicists from seven countries who are calling for a moratorium on the creation of gene-edited babies.

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A pioneer in research on the human genome and head of the Broad Institute in Cambridge, Mass., Eric Lander is among 18 prominent scientists and bioethicists from seven countries who are calling for a moratorium on the creation of gene-edited babies.

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Scientists could continue to do the studies necessary to determine if it might be possible to safely and effectively edit the DNA in human embryos for purposes that might eventually be deemed appropriate, such as preventing genetic disorders for which there are no other options.

If that ever happens, the group proposes that the public be given ample advance notice about any proposal to try to create gene-edited babies to allow time for a “robust international discussion about the pros and cons of doing so.” The group suggests that period could last two years.

“It’s such a powerful technology that already people have started proposing ways to ‘improve the human genome,’ ” Lander says. But, he adds, “deciding whether we should be reshaping the human genetic code requires a lot of really careful thought.”

In the United States, federal law prohibits the creation of gene-edited babies. And about 30 countries have similar prohibitions. But many others do not.

The call for a global moratorium is being welcomed by many scientists and bioethicists.

“The philosophical and theological consequences of re-writing our own instruction book are sufficiently major that somebody like me — who generally is opposed to the idea of moratoriums — feels that it’s time to stop and look very carefully at the pros and cons,” Dr. Francis Collins, who directs the National Institutes of Health, tells Shots. Collins co-wrote an article supporting the call.

But some scientists and bioethicists, while agreeing it’s far too soon for anyone to try to make gene-edited babies, worry about using the word moratorium.

“I’m concerned a moratorium complicates future discussions rather than clarifying them,” says Dr. George Daley, dean of the Harvard Medical School.

“How long should a moratorium last? Who gets to decide how and when to rescind a moratorium? Is such a call going to prompt even more restrictive attempts to legislate the science and prohibit any clinical work?” Daley says.

Some fear a moratorium could drive scientists underground.

“I don’t think we want to drive people into hiding over this,” says Jennifer Doudna, a University of California, Berkeley, biochemist who helped develop CRISPR. “Instead, I would like to have a much more open, transparent international conversation. I don’t like the word moratorium because it kind of goes against that spirit.”

But others welcome the call, saying clearer statements by groups like the National Academy of Sciences might have prevented He Jiankui from doing what he did.

“Although it would have been a lot better if the call for an explicit moratorium had been proactive rather than reactive, better late than never,” Ben Hurlbut, a bioethicist at Arizona State University writes in an email.

Some say a moratorium is crucial to prevent scientists from trying to create “designer babies.”

“This statement is saying, ‘Hey. Wait. Stop. This is too important to have small groups of scientists who’ve taken it upon themselves to be making these decisions for all of humanity,’ ” says Marcy Darnovsky, who runs the Center for Genetics & Society, a watchdog group.

“Allowing reproductive gene-editing would open the door to certain people whose parents were able to afford genetic upgrades being considered superior to everyone else,” Darnovsky says. “The last thing we want to do is build a future in which we’re creating classes of people who are considered genetic-haves and others who are have-nots.”

Others agree.

“The world must unite to prevent there being a fleet of offshore boats with a little designer-baby logo on them,” says Fyodor Urnov, a visiting scholar at the Innovative Genomics Institute at the University of California, Berkeley. “It’s not too late to prevent that from happening. And we must.”

The presidents of the U.S. National Academy of Medicine and National Academy of Sciences, and the Royal Society in Britain, wrote another accompanying article noting that they are working to develop an international consensus on standards that should apply to such research.

“We must achieve broad societal consensus before making any decisions, giving the global implications of heritable genome editing,” they write.

A journal editorial notes that “whether such a moratorium would be effective is one point being actively debated by the research community, national academies and groups such as the World Health Organization.”

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