Gene-Edited Babies Claim Sparks New Questions About Safety : Shots - Health News Concerns over a Chinese scientist's claim that he created the first gene-edited babies grow with more questions about whether it worked and the possible harm he may have inflicted on the twin girls.
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Outrage Intensifies Over Claims Of Gene-Edited Babies

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Outrage Intensifies Over Claims Of Gene-Edited Babies

Outrage Intensifies Over Claims Of Gene-Edited Babies

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Next, we have a second look at the claim of a Chinese scientist. He said he made the first gene-edited babies. The scientific community is looking more closely now at what he did and did not accomplish. Here's NPR health correspondent Rob Stein.

ROB STEIN, BYLINE: Since He Jiankui rocked the world by claiming he had created the world's first gene-edited twin girls to protect them from AIDS, the outrage has only intensified. Here's Francis Collins, the director of the National Institutes of Health.

FRANCIS COLLINS: Everything that's emerged over the last week only adds to the concern about this having been a deeply unfortunate, misguided misadventure of the most dramatic sort, especially because it involved the first manipulation of the human genome, resulting in live births of two little girls. It was shocking at the time. A week later, it's still shocking.

STEIN: Scientists have been scouring what little information's been revealed, but one thing's clear. The Chinese scientist's editing was sloppy. He may only have protected one twin from HIV, accidentally making her ostensibly genetically superior to her sister, or even failed to protect either baby and just sliced dangerous mutations into their DNA.

COLLINS: I hope these two little girls are OK. This present time, it's hard to know.

STEIN: It's also become clear he violated all the rules of experimenting on people. Did the girls' parents really understand what he was doing to their embryos? Were they coerced somehow into volunteering?

COLLINS: It was wrong in every way.

STEIN: And here's something else. He may have kept his experiment secret from Chinese authorities, but he had been talking to scientists in the United States.

COLLINS: If there were people who knew that he was crossing this boundary and didn't speak up and didn't bring that to the attention of other authorities, that's regrettable.

STEIN: Matthew Porteus is a professor of pediatrics at Stanford, where He had studied. He says He told him about his plans in February.

MATTHEW PORTEUS: And at that point, I really became quite angry and told him in no uncertain terms about all the reasons that he should not do this.

STEIN: Porteus thought He understood.

PORTEUS: I really - I mistakenly assumed that the person on the other side of the table would respect my very strong opinions about, you know, the recklessness of what he was proposing to do and that that would be enough to stop him. And obviously, it was not.

STEIN: Porteus now wishes he'd reported He to Chinese authorities and hopes he's punished appropriately for what he's done. One of Porteus's colleagues, William Hurlbut, had a series of long talks with the young Chinese scientist over the past year. But as time went by, Hurlbut, too, got alarmed.

WILLIAM HURLBUT: I had really admonished him not to do this kind of stuff, and I'm sad that it happened this way. I think it's tragic. I think he's hurt himself, his career, and I think he's endangered human patients and I think he's set science back.

STEIN: Hurlbut's a physician and a bioethicist.

HURLBUT: You think about it, we're the first species and this is the first moment, basically, when we're capable of altering human genetics so that we can take hold and perhaps guide the future of human evolution at some level. That's a very significant moment, not just in the human story, but in the whole history of life.

STEIN: So what will happen now? Many hope there's some way to put the brakes, or at least hit the pause button, on gene-edited babies. The organizers of an international summit where this unfolded last week condemned He's experiment but rejected a moratorium and instead endorsed trying to find a way to someday safely and responsibly create gene-edited babies to prevent devastating diseases. But some scientists think that fell short. Here's Francis Collins again, from the NIH.

COLLINS: To suggest that it's only a matter of time before we do decide to do this steps over a really significant public discussion. There's still some possibility, I think, a significant possibility, that that debate will lead to the conclusion for the foreseeable future that this is a line we should not cross.

STEIN: For their part, the summit organizers defend their position. Alta Charo is a bioethicist at the University of Wisconsin.

R ALTA CHARO: Our summit statement didn't demand that this technology be made available to people. It simply laid out a pathway to responsible development for those jurisdictions that choose to allow this to go forward.

STEIN: And only maybe when it's the only way to prevent terrible suffering, never to make designer babies. He Jiankui is believed to be back home in China, where authorities are trying to decide what should happen to him. He claims he may already have another very early pregnancy underway with another gene-edited baby. Meanwhile, the World Health Organization wants to come up with international rules on gene editing, but there may be no way to totally guarantee no rogue scientist anywhere ever tries make more gene-edited babies. Rob Stein, NPR News.

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