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The quest to create genetically modified babies is getting a reboot

JUANA SUMMERS, HOST:

Genetically engineered humans may still sound like the stuff of science fiction, but the quest to create genetically modified babies is getting a reboot. NPR's health correspondent Rob Stein brings us the story.

ROB STEIN, BYLINE: About a year before the pandemic hit, a scientist in China, He Jiankui, revealed that he had secretly engineered the birth of the first CRISPR gene-edited babies.

(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.

STEIN: The birth of the twins was reviled as reckless and unethical because, among other things, CRISPR gene editing was so new. China imprisoned him for three years for violating medical regulations. Fast forward to today. Most scientists and bioethicists still say that gene editing of human embryos to produce children would be irresponsible. But Silicon Valley startups, East Coast entrepreneurs and some so-called pronatalists, who fear declining birth rates pose an existential threat, are eager to try. Alta Charo is a lawyer and bioethicist from the University of Wisconsin.

ALTA CHARO: You've got a convergence of people who are thinking that they can improve their children, whether it's their children's health or their children's appearance or their children's intelligence, along with people who are comfortable using the newest technologies and people who have the money and the chutzpah, the daring, to try and do this through starting companies that would bring these forces together.

STEIN: In fact, the first private company just announced plans to pursue editing human embryos. Entrepreneur Cathy Tie co-founded the startup in New York City. It's called Manhattan Project.

CATHY TIE: Manhattan Project will explore how to do gene correction in human embryos more safely. But we want to be the company that does this in the light, with transparency and with good intentions.

STEIN: Tie's Manhattan Project plans to test newer, potentially less risky gene-editing techniques to hopefully prove it would be safe to modify embryos to make healthier babies. Tie says she'd only try to prevent disease.

TIE: I think there are so many diseases that have no cures and there's not going to be a cure for them for many more decades. And I think that we have the responsibility to talk about this with patients that do have those heritable diseases and see if they want the option to not pass that on to their future generations.

STEIN: But some investors are looking to go further. Malcolm Collins and his wife Simone are vocal pronatalists who say they're funding many cutting-edge reproductive technologies.

MALCOLM COLLINS: People can say, well, you're playing God by using this type of technology. And I'd say people would say that with any technology of the past. They'd say you're playing God with glasses. They'd say you're playing God with blood transfusions. I'm really excited for a future within human history where there are some people that have decided to really lean into technologies like this.

STEIN: To prevent diseases but also someday maybe to design children with traits their parents want. Here's Simone Collins.

SIMONE COLLINS: We fundamentally believe in reproductive choice, and we also very much support parents' rights to give their children every privilege they can. And for some people, that means obviously eliminating risks of very dangerous diseases. But for other people, that means investing in education and tutoring to make them smarter or athletically better. And if people would like to start to do that at a genetic level, they should have every right to do so.

STEIN: Now, many scientists endorse researching genetic modification of sperm, eggs and embryos but carefully and with limits. Dr. Paula Amato works on embryo editing at the Oregon Health and Science University.

PAULA AMATO: NIH doesn't typically support human embryo research, so if the technology bros are interested, that would be welcome in the field.

STEIN: As long as they make safety the top priority, she says, and at least initially would only try to edit out diseases. U.S. regulations prohibit trying to make gene-edited babies, but some wonder whether that could change. Glenn Cohen is a lawyer and bioethicist at Harvard.

GLENN COHEN: There's a president who has some advisers and some political forces whispering in his ear that have a decidedly pronatalist bent that are interested in these technologies. All of that is opening up a moment where some of what would have been unthinkable may now become possible.

STEIN: For many, all this sets off alarm bells. Hank Greely is a bioethicist at Stanford.

HANK GREELY: Move fast and break things has not worked very well for Silicon Valley in health care because when you talk about reproduction, the things you are breaking are babies. And I think that makes it even more dangerous and even more sinister.

STEIN: And remember the CRISPR baby scientist? Since getting out of a Chinese prison, he's gone from repentant to defiant and is vowing to resume working on gene-edited babies, too. Tie, the Manhattan Project co-founder, was briefly married to He, but says they recently divorced and that he has nothing to do with her new human embryo gene-editing company.

Rob Stein, NPR News.

(SOUNDBITE OF LOLA YOUNG SONG, "CONCEITED") Transcript provided by NPR, Copyright NPR.

NPR transcripts are created on a rush deadline by an NPR contractor. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.

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