This summer, after a Russian biochemist announced plans to follow in the footsteps of a rogue Chinese researcher and produce genetically modified children, a 150-year-old academic journal that reflects the current scientific consensus called on the world to stop him.
“Time is of the essence,” Nature said. The dangers of altering human DNA that will be passed on to offspring simply aren’t understood well enough to allow Denis Rebrikov, a prorector of one prestigious Russian institute and a lab director at another, to proceed, the British publication argued.
Six weeks after Nature’s call to action, some of Russia’s top geneticists convened a secret meeting with health officials at a facility in southern Moscow that included a special guest with unusual access to the Kremlin: Vladimir Putin’s eldest daughter, according to three people who were there.
Emerging technology
Figuring that in Russia only Putin can decide how to regulate an emerging technology capable of changing the code of every living cell, the geneticists wanted to present their conflicting opinions about Rebrikov’s intentions in front of Maria Vorontsova, an endocrinologist whose views on bioethics are becoming increasingly influential, the people said.
For three hours, Vorontsova listened intently to arguments for and against Rebrikov’s planned use of the gene-editing technique known as Crispr, participants said. Rebrikov, a brash former wrestler, is working with a deaf couple who want him to prevent a planned child from inheriting their condition by neutralizing defective GJB2 genes during artificial insemination.
The proponents of Rebrikov’s crusade who were at the closed-door session said they came away optimistic Vorontsova may champion their cause. She didn’t say “yes” or “no,” they said, but she did agree that scientific progress can’t be stopped and that human DNA editing should be prohibited in the private sector and confined to state-run facilities to maximize oversight.
Rebrikov’s opponents, including the vast majority of experts, say approving the application he’s preparing to submit to the Health Ministry in October would only encourage other scientists to conduct risky experiments with human sperm, eggs and embryos before a global framework can be put in place to govern one of the most controversial areas of science.
Vorontsova, who specializes in pediatric growth disorders, didn’t respond to requests for comment sent to the National Endocrinology Research Center, where she works, or the Russian Association of Assistance to Science, where she sits on the presidium. The Kremlin has never publicly confirmed that Vorontsova is Putin’s daughter.
Complicated issue
Putin’s spokesman, Dmitry Peskov, declined to comment on gene editing, saying it’s not “a presidential issue.” Health Minister Veronika Skvortsova, when asked if Rebrikov’s proposal will get the greenlight, told Bloomberg that “an ethics committee will deal with this very complicated issue.”
In several interviews in Moscow, Rebrikov, 43, said he’s openly pushing ahead with the project because he’s both confident in the procedure’s safety and tired of waiting for officials to establish legal parameters for Crispr’s use. Russian law doesn’t address the issue directly and it may take the World Health Organization another year or more to establish formal gene-editing guidelines.
“Everyone is just yammering,” Rebrikov said during a break at one his labs. “I want the rules to be set, but nobody is doing this.”
While known experiments with Crispr—to improve crops, modify malaria-carrying mosquitoes, treat cancer—are constantly expanding, no government has approved wielding the tool to manipulate what’s called human germlines. China condemned the work of researcher He Jiankui last year as “unlawful” after He announced the birth of twin girls who were genetically altered to be resistant to HIV. He’s not been heard from since and rarely seen.
Potential misuses
One senior Russian official involved in the Rebrikov debate said the potential misuses of Crispr are so profound that Putin, despite what his spokesman says, will “definitely” make the final call on the matter, even if the decision is communicated privately.
Putin, 66, has made it increasingly clear in recent years that he expects genetic engineering’s eventual impact on society to be as great as or even greater than artificial intelligence—in ways both good and bad. In 2017, he predicted “people” would start editing pre-birth human DNA “very soon,” a development with possible military applications that he’s warned could be “more terrible than a nuclear bomb.”
Last year, before He revealed his achievement, which was widely condemned, Putin allocated about $2 billion for genetic research and named Vorontsova to the 30-person panel overseeing the work. It’s an area of study that Putin has said will “determine the future of the whole world.”
Rebrikov, a native Muscovite, is a Russian patriot who speaks of his own research in geopolitical and religious terms that seem designed to appeal to Putin’s sensibilities.
Cold War comparisons
With China now strictly regulating human-embryo editing and the U.S. recently extending its ban, Russia has the chance to become the prime mover in an industry with unfathomable upside, the scientist said. He compared the quest to perfect germline editing to the arms and space races of the Cold War, only with more runners.
Little is known about Crispr’s long-term effects on the human body. The first detailed report of doctors using Crispr to manipulate the DNA of a living patient in an effort to cure disease—a case study of just one man with cancer—was only published in September.
Critics say we may be more than a decade or more away from having enough knowledge to safely edit embryos that are implanted for pregnancy. Rebrikov’s actions, they argue, could prove disastrous.
“He is being somewhat reckless,” said Victor Dzau, president of the U.S. National Academy of Medicine. “The question is why? What is his motive to proceed and disregard the international scientific and medical community?”
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.”
Another potential stumbling block for Rebrikov and his backers is the Russian Orthodox Church. Key scientists have been quietly sounding out leading clerics to gauge the level of pushback, if any, they can expect if the experiment goes ahead. So far, they’re not getting much, a person familiar with the matter said.
The Moscow Patriarchy published a “preliminary” position on its website in June saying that while genetic editing has the potential to prevent inherited afflictions, the procedure should be prohibited if an embryo’s viability is threatened. The church is urging members to submit their own opinions by Sept. 30.
For Rebrikov, anything short of outright condemnation by the priesthood is a step in the right direction.
“What we do is God-pleasing,” he said in early September. “We heal, just like Jesus did.”
When asked if he had any final comments for this story, Rebrikov said he’s taking a break from speaking to the media. He wouldn’t say why.
