As with cloning, Rebrikov said he’s “fairly certain” there are dark sites around the globe where scientists are already violating the social taboo against tinkering with human embryos—so it’s only a matter of time before the practice goes mainstream.
“It currently costs about a million rubles ($15,500) to genetically change an embryo—more than a lot of cars—but prices will fall with greater use,” Rebrikov said. “I can see the billboard now: ‘You Choose: a Hyundai Solaris or a Super-Child?’”
But three things need to happen before that vision becomes reality, Rebrikov said. The first is to show clearly that the benefits far outweigh the risks, which is what he said his application to the Health Ministry will do. The second and third, political will and social acceptance, are directly correlated in Russia and depend on Putin.
For these reasons, Rebrikov said he has to start “small,” focusing on providing an obvious benefit to a tiny subset of the population: prospective parents with hereditary deafness. Rebrikov originally wanted to experiment on prospective parents with HIV, but couldn’t find a suitable couple, so he switched to deafness after consulting with audiologists.
“This situation is completely analogous to developing an atomic bomb,” he said. “Can bad people use technology for bad purposes? Of course. But did ethical concerns stop the Soviet Union from doing so?”
Outspoken opponent
That’s not a persuasive argument to Sergei Kutsev, Rebrikov’s most outspoken—and credentialed—opponent.
Kutsev, who is both the chairman of the Health Ministry’s ethics committee and its chief geneticist, said it’s plainly unethical to edit human DNA meant for pregnancy when so many questions about the potential ramifications of such a procedure remain unanswered.
The main problem in Russia now is the “legislative vacuum” surrounding the use of Crispr, a legal opening that encourages maverick researchers like Rebrikov to take risks they shouldn’t, Kutsev said in an interview at his office in Moscow.
The mutations of the GJB2 gene found in Rebrikov’s patients harm cells in the part of the inner ear that regulates auditory signals—a condition that effects about 10 newborns a year in Russia. Rebrikov said the only available treatment, surgically fitted cochlear implants, is expensive, discomforting and requires years of rehabilitation.
But modifying the GJB2 may be worse because the gene is linked to other diseases that effect eyes and skin, according to Bionews, a British publication that covers genetics and stem-cell research.
Kutsev, 54, said he couldn’t sleep after he learned Rebrikov had finally found a couple for his experiment and worries he’ll proceed with or without state approval, something Rebrikov says he doesn’t intend to do. Kutsev said he’d like to invite the deaf couple, whoever they are, to his institute so he can fully explain what’s at stake.
“While that Chinese scientist worked in secret and was held personally liable for what he did, Rebrikov is declaring his intentions to the world. He’s making all of us responsible to humanity,” Kutsev said.
But Rebrikov is far from alone.
The application he’s working on, which will include reams of research and detailed risk assessments, will actually be filed under the authority of the Kulakov National Research Center for Obstetrics, Gynecology and Perinatology, which houses a laboratory Rebrikov uses. The institute is run by Gennady Sukhikh, one of the most influential medical figures in Russia.
Stem-cell therapies
Sukhikh, 72, was an early pioneer of controversial stem-cell therapies that cater to wealthy people seeking to rejuvenate their bodies and extend their lives. One of his patients was Putin’s predecessor in the Kremlin, the late President Boris Yeltsin, according to a book by Alexander Khinstein, a former journalist who’s now a lawmaker in Putin’s United Russia party.
“Such great events should be approached very sensibly,” Sukhikh said by phone, adding that Rebrikov’s application may take months to complete. “Our country is moving strictly in accordance with international ethics.”
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