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Embattled Russian scientist sharpens plans to create gene-edited babies

Rebrikov acknowledges the scientific consensus that a bright red line now prohibits germline editing because the young CRISPR technology remains too error prone. Yet to the utter dismay of many colleagues, he has put his toes right on the line. And he is forcing Russia and the world at large to confront the key question: How, exactly, do you responsibly cross it?

Rebrikov first discussed editing embryos at a conference in Kazan, Russia, on "postgenome" technologies in October 2018, nearly 1 month before the He story would explode. "I was really surprised that in the full auditorium of 500 people he was freely speaking about this issue," says Egor Prokhortchouk, a genomics specialist at RAS's Research Center of Biotechnology in Moscow. Even though Rebrikov's study didn't violate Russian regulations, Prokhortchouk still thought it was pushing the limits of what the strict science and health ministries would allow.

Working with nonviable embryos made at his IVF clinic—part of the Kulakov National Medical Research Center for Obstetrics, Gynecology and Perinatology—Rebrikov and his co-workers used CRISPR to introduce a deletion into a gene for a protein, CCR5, that studs the surface of white blood cells. People who naturally inherit a defective CCR5 gene from both parents are highly resistant to HIV and suffer no dramatic ill effects from the protein's absence; this is the same gene that He tried to cripple in the twin girls. But Rebrikov's experiment—which joined about a dozen such human embryo-editing studies published to date, mainly from Chinese researchers—simply explored the efficiency of CRISPR. He did not discuss implanting edited embryos. "Everybody was interested in technical details and nobody asked questions about ethical things," Prokhortchouk says.

In February, however, Rebrikov disclosed his greater ambitions to Prokhortchouk and his medical students. Rebrikov and his colleagues had described the CCR5 embryo study in the Bulletin of RSMU, which led Prokhortchouk to invite him to a student journal club to discuss the paper and He's experiment. "Rebrikov insisted that he wants to create CCR5-edited babies and that this will protect them from HIV infection from their mothers," says Prokhortchouk, who was—and remains—opposed to such plans.

Rebrikov says from the outset he was not interested in preventing a specific medical ailment, but rather to prove that he could safely help people with germline editing, which he believes will one day be widely used. He wanted to build his case by finding people with rare medical situations that would warrant the risk. He hoped to identify, for example, women who were living with HIV and wanted babies but were not responding to marketed antiretrovirals, which powerfully reduce the risk of mother-to-child transmission. Using IVF to create embryos homozygous for the CCR5 mutant in theory could help prevent infection from their mothers.

[...] RAS [Russian Academy of Science] has not spoken publicly about human germline editing, even though many science academies around the world have called human germline editing premature. One reason may be that many Russian scientists did not take Rebrikov's pronouncements seriously. "When I first heard about this proposal, I considered this a bad joke because our country overregulates research," says Raul Gainetdinov, a psychiatrist who heads the Institute of Translational Biomedicine at St. Petersburg State University. "We stumble like hell. We cannot push anything through the Ministry of Health." Gainetdinov adds that only a handful of labs in Russia even do germline editing in animal models.

Elena Grebenshchikova, a bioethicist at RAS's Institute of Scientific Information on Social Sciences, told the Moscow meeting attendees that she is glad Rebrikov pushed these issues into the public arena in Russia. "There's a lack of communication between scientists and the society," she said. "His openness to the subject is really a plus to shift the responsibility from a simple scientist or an institution to the shared responsibility where all of society is included."

Rebrikov has grown weary of the frenzied media, some of which has badly misrepresented his work and plans. He will no longer offer a timeline when asked when he might be ready to seek approval to implant an edited embryo. "That's a very strange question because now, we're not making babies, we're just proceeding in a scientific way."

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