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Chinese scientist who went to prison for a gene-therapy experiment is back in the lab

MICHEL MARTIN, HOST:

Nearly five years ago, a Chinese scientist shocked the world with this announcement.

(SOUNDBITE OF ARCHIVED RECORDING)

HE JIANKUI: Two beautiful little Chinese girl named Lulu and Nana came crying into the world as healthy as any other babies a few weeks ago.

MARTIN: Lulu and Nana, the world's first gene-edited babies, were created in secret in China by He Jiankui. He was later sentenced to three years in prison for, quote, "illegal medical practices," unquote. And now that he's out, rather than lying low, he is back in the business of editing genes. NPR's John Ruwitch was the first journalist to visit his office.

JOHN RUWITCH, BYLINE: He Jiankui lives on the outskirts of Beijing. And we meet him at a mostly empty co-working space that's part of a business incubator.

HE: Oh, hi.

RUWITCH: Hey. How are you? Yeah, I'm John. Hey.

HE: Hi.

RUWITCH: Great to meet you.

HE: Good.

RUWITCH: So your office is in here, in this...

HE: You want to come in my office? This is it right here.

RUWITCH: Yeah, we'd love to see it (laughter).

HE: Just follow me.

RUWITCH: To be here with this man is sort of surreal. His announcement about the gene-edited babies in 2018 was historic. And it set off a firestorm of global criticism. There were accusations that he had grossly violated medical ethics, that he was like Dr. Frankenstein. Then he went silent. He's only recently started to speak out. So one of the first things we wanted to know was how he felt about what he did and whether he had drawn any lessons from it.

HE: I did it too quickly, yeah. I have been thinking of a lot in the past four years. Yeah, I did it too quickly.

RUWITCH: He would not elaborate on what he means when he says he did it too quickly. What he did was edit the genes of human embryos to try to make them immune to HIV. He was widely condemned because the move sparked fears that he had opened the door to designer babies. And no one knew whether it was safe or how it might affect the health of the babies. So we asked him, how are those babies, now 5-year-old kids?

HE: Well, what I can tell is they are living a normal, peaceful, non-disturbed life and - non-disturbed.

RUWITCH: Again, pressed for details, he declined to comment. He wouldn't talk about his prison experience either.

HE: Well, I don't want to talk anything on that anymore.

RUWITCH: Don't want to talk about it? Was it in Beijing? Where were you?

HE: (Laughter).

RUWITCH: You won't even say?

HE: Just let it go.

RUWITCH: The past is the past as far as He Jiankui is concerned.

HE: I think no one can rewrite history or go back there and do it better or something, no. I just want let it go so I can move on to my new project to cure the patients.

RUWITCH: He says he set up a new lab where he's using CRISPR gene-editing technology to come up with a cure for Duchenne muscular dystrophy, or DMD. It's a genetic disorder that causes muscles to waste away. And he says he decided to do it because he was approached by patients who knew his name from news coverage of his baby gene editing.

HE: There are over 2,000 DMD patients. They are writing to me, text me or make a phone call to me. They want me to develop a therapy for them.

RUWITCH: He says he's got some seed money, including from two American donors who he won't name. And he says he has five people working with him and other collaborators outside Beijing. He won't let us visit the lab, though.

HE: Currently, we are at a stage - and we design the experimental protocol. And we are testing some of the formula in a few months. We are going to do the animal study using mice.

RUWITCH: After mice, it's dogs, then monkeys. And he says he hopes clinical trials on humans can start in 2025. That makes some people nervous.

KIRAN MUSUNURU: He very much wants to rehabilitate his reputation.

RUWITCH: Kiran Musunuru is a professor of medicine at the University of Pennsylvania who's an expert in gene editing. He's followed He Jiankui's case closely. He says, in editing the genes of the babies, not only did He cross ethical lines, the science was bad and dangerous.

MUSUNURU: You know, he's not a physician. He has no medical training whatsoever. He has no training in clinical trials. Yet he took it upon himself to run what he viewed as a clinical trial. And, you know, to fast-forward several years and what he's trying to do now, I can see it playing out all over again.

RUWITCH: He says the odds are heavily against He coming close to a cure for Duchenne muscular dystrophy in such a short time on the cheap. It's dangerous. And several major drug companies have been working on it for years.

MUSUNURU: There's a reason why it is so expensive to develop drugs and why it takes so long, because you have to have a very, very, very high bar in terms of rigor. You got to make sure that this is safe. Otherwise, you know, your patients are going to die when you give them a treatment that's not well-vetted.

RUWITCH: A group of Chinese scientists and legal experts have reportedly called on the authorities here to ban He from future experiments involving people. But it doesn't seem to faze him.

HE: I'm a scientist. I was trained in college in the United States to be a scientist.

RUWITCH: He got his Ph.D. at Rice University and did a postdoc at Stanford.

HE: To solve science problem, to do something, help people, that's something in my blood. It's not easy to change.

RUWITCH: Science may be in his blood, but some wonder, why would the Chinese government allow a convicted criminal to get back into the gene-editing game? After all, his last project caused a massive stir and, to some, reflected poorly on China. Ben Hurlbut, an expert in bioethics at Arizona State University, has a possible answer.

BEN HURLBUT: What's at stake is a kind of race for supremacy in biotechnology. And that has a kind of nationalist dimension to it.

RUWITCH: He Jiankui wasn't some rogue scientist who went off the rails, he says. He had support. And others in China knew what he was doing. The baby gene-editing project may not have played well with the international community. But what He did was an undeniable first. China was first. He is now looking forward. And he says trust in him should not be based solely on previous experience.

HE: It's based on what I'm doing at this moment. And we show the data we have. We show the approval we have, show the ethic guidance we have, everything. That will build the trust.

RUWITCH: On He's desk is a statuette of Guangdong, a Taoist God who represents loyalty to the king and is said to keep bad fortune at bay. He also recently traveled to the Wudang Mountains in central China, where he consulted a Taoist priest about his fortune.

HE: He told me after extremely bad luck comes good luck.

RUWITCH: And that's something He Jiankui is hoping for.

John Ruwitch, NPR News, Beijing.

(SOUNDBITE OF BJ KMANNSKI'S "ERNESTO") Transcript provided by NPR, Copyright NPR.

John Ruwitch is a correspondent with NPR's international desk. He covers Chinese affairs.