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The Unregulated Terrain Of Gene-Editing Technology


As we close out 2018, we are revisiting some of the biggest stories this year, including a real shocker from the world of science - the Chinese researcher who claimed to have created the world's first gene-edited babies. NPR health correspondent Rob Stein covered that story for us. And he's back in the studio now to lay out why this was such a big deal and what we should be looking for in 2019. Hi, Rob.


KELLY: So in a few sentences, remind us who this scientist is and what he says he did.

STEIN: Oh, yes. Sure. This was a real jaw-dropper. This nameless scientist is He Jiankui. He's from the Southern University of Science and Technology in Shenzhen, China. And he claims he used this powerful new kind of genetic engineering that's known as CRISPR to create a pair of gene-edited twin girls. And he says he did it to protect them, to enhance their immune systems so they wouldn't get infected with HIV, the virus that causes AIDS.

KELLY: Sure. And this made scientists' heads all over the world explode. Why?

STEIN: Well, you know, many scientists think it may be OK someday to edit the DNA in human embryos and then use those embryos to create gene-edited babies to prevent terrible genetic diseases. But right now, a lot of scientists say that it's just too soon, that it would be irresponsible and unethical to do that sort of thing. And the reason for that is it could be dangerous. This new gene-editing technology, it's really cool, really promising, but it's really new. And instead of fixing DNA, it could end up introducing mutations into DNA that could cause terrible genetic diseases for any offspring for generations to come.

KELLY: So there's the consequences for these twin girls, their health, any babies they may have, but, I mean, again, also these really big ethical questions that scientists are now wrestling with.

STEIN: Absolutely. I mean, the idea of creating gene-edited, modified human beings has long been considered off limits. And the reason for that is you could kind of consider it sort of playing God. I mean, you're basically trying to change the course of human evolution on a genetic level.

And that raises all kinds of, you know, scary, kind of "Brave New World" scenarios about designer babies and creating genetically superior super race of people. And that of course raises all kinds of really profound philosophical, moral and ethical questions that society really has to work through before anyone takes that kind of leap. And some scientists think, look, there may never be a really good reason to go there.

KELLY: Is that why, for you, this is the story that you're going to remember from 2018? I was wondering which you would pick of the gazillion stories that you've covered on the gazillion scientific advancements that come in any year.

STEIN: Oh, absolutely. I mean, this is the sort of thing that scientists have long thought might be possible and may occur someday but have long feared that this technology would sort of unfold this way. I mean, as I said, people think this is really promising, could be revolutionary for medical research. But if it's misused or people jump the gun, it could have some terrible ramifications for the future of science and the future of this kind of research.

KELLY: And I remember as you were reporting the story as it broke that there was a big question mark over whether this scientist had actually done it. Have we now established that for sure?

STEIN: Yeah. No, there's still really big questions. I mean, he basically went rogue. And instead of having his experiments carefully vetted by other scientists, like is usually done, he just announced this in a series of YouTube videos. So no one really knows for sure that he did this, but people think he probably did have the wherewithal to do this.

And the big question is why. Why did he do this? And people I've talked to over the last few weeks, people who've worked with him and knew him, say, look, he was a really bright guy, really ambitious and kind of naive at the same time. And so he was trained in the United States. He went back to China, where he became a rising star. And in China, they've made a national priority to basically dominate this new gene-editing technology. So there are a lot of competitive pressures to basically move this stuff forward really fast and make a mark.

So it seems like he thought he might have been doing something historic and important, something along the lines of the first IVF babies. And maybe he was kind of surprised that instead of being hailed as a scientific hero, he's now being considered a scientific pariah.

KELLY: And meanwhile, he's actually under investigation by the Chinese government, right?

STEIN: Absolutely.

KELLY: And what about the twin girls? How are they doing?

STEIN: Yeah, so that's the big question. I mean, this scientist, he says their names are Lulu and Nana. And he says they're home, and they're healthy with their parents. But no one really knows. I mean, as I said, there's - as people have pored through what he's presented, it looks like instead of fixing their DNA and enhancing their immune system to protect them from HIV, he might have missed his mark and just kind of messed up their DNA. What that means for their health and well-being in the future, no one really knows. Everyone's kind of holding their breath and crossing their fingers that these little girls are OK.

KELLY: So aside from that, what else you watching for in 2019? Where does this go?

STEIN: Well, so that's - you know, this has prompted a lot of real deep soul-searching in the scientific community about, you know, what does this say about the world's ability to police science? I mean, as I said, CRISPR, this gene-editing technology, is really promising. People are trying to use it to do all sorts of things. Some of those things are making people very nervous, like gene-editing human embryos, maybe creating gene-edited insects.

So there's a lot of debate about how to regulate this stuff. And so people are saying, you know, maybe we should have a moratorium on doing any more gene-editing experiments on human embryos until we've sorted this stuff out. Other people are saying, but that would be really bad for the future of this research. And so there's a big debate going on.

KELLY: And also really hard to enforce, I guess.

STEIN: Really hard to enforce. The World Health Organization says it's going to step in and try to come up with some uniform international guidelines. But who knows if they really have the authority to do that sort of thing.

KELLY: NPR's Rob Stein, sounds like you have an interesting 2019 on the horizon.

STEIN: Yeah.

KELLY: Thanks for stopping by.

STEIN: Sure thing.

(SOUNDBITE OF MUSIC) Transcript provided by NPR, Copyright NPR.

Rob Stein is a correspondent and senior editor on NPR's science desk.