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 be passed on to offspring simply are not well enough understood to allow Denis Rebrikov, a prorector of one prestigious Russian institute and a lab director at another, to proceed, the British publication argued.
Illustration: Mountain People
Six weeks after Nature’s call to action, some of Russia’s top geneticists convened a secret meeting with health officials in Moscow that included a special guest who has unusual access to the Kremlin: Russian President Vladimir Putin’s eldest daughter, according to three people who were there.
Figuring that in Russia only Putin could 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.
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 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.
Proponents of Rebrikov’s crusade who were at the closed-door session said they came away optimistic Vorontsova might champion their cause. She did not say “yes” or “no,” they said, but she did agree that scientific progress cannot 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 is preparing to submit to the Russian Ministry of Health this month would only encourage other scientists to conduct risky experiments with human sperm, eggs and embryos before a global framework could be put in place to govern one of the most controversial areas of science.
Vorontsova, who specializes in pediatric growth disorders, did not 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.
Putin’s spokesman declined to comment on gene editing, saying it is not “a presidential issue.” Russian Minister of Health Veronika Skvortsova, when asked if Rebrikov’s proposal would get the green light, told Bloomberg that “an ethics committee will deal with this very complicated issue.”
In several interviews in Moscow, Rebrikov, 43, said he is openly pushing ahead with the project because he is both confident in the procedure’s safety and tired of waiting for officials to establish legal parameters for Crispr’s use. Russian law does not address the issue directly, and it might take the WHO another year or more to establish formal gene-editing guidelines.
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 is called human germlines.
China condemned the work of researcher He Jiankui (賀建奎) last year as“unlawful” after He announced the birth of twin girls who were genetically altered to be resistant to HIV. He has not been heard from since and rarely seen.
One Russian official involved in the debate said the potential misuses of Crispr are so profound that Putin, despite what his spokesman says, would “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 bad. In 2017, he predicted “people” would start editing pre-birth human DNA “very soon,” a development with possible military applications that he has warned could be “more terrible than a nuclear bomb.”
Last year, before He revealed his achievement, which was widely condemned, Putin allocated about US$2 billion for genetic research and named Vorontsova to the 30-person panel overseeing the work. It is an area of study that Putin has said will have the ability to “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. With China now strictly regulating human-embryo editing and the US recently extending its ban, Russia has the chance to become the prime mover in an industry with unfathomable upsides, 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 last month.
Critics say we might 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,” US National Academy of Medicine president Victor Dzau said. “What is his motive to proceed and disregard the international scientific and medical community?”
Rebrikov said he is “fairly certain” there are dark sites around the globe where scientists are already tinkering with human embryos — so it is only a matter of time before the practice goes mainstream.
“It currently costs about a million rubles [US$15,360] to genetically change an embryo, but prices will fall with greater use,” Rebrikov said. “I can see the billboard now: ‘You Choose: a Hyundai Solaris or a Super-Child?’”
However, 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. 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 could not 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?”
That is not a persuasive argument to Sergei Kutsev, Rebrikov’s most outspoken — and credentialed — opponent. Kutsev, who is both the chairman of the Russian Ministry of Health’s ethics committee and its chief geneticist, said it is 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 should not, Kutsev said.
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, uncomfortable and requires years of rehabilitation.
However, modifying the GJB2 might be worse because the gene is linked to other diseases that affect the eyes and skin, according to Bionews, a British publication that covers genetics and stem-cell research.
Kutsev, 54, said he could not sleep after he learned Rebrikov found a couple for his experiment and worries he will proceed with or without state approval, something Rebrikov says he does not intend to do. Kutsev said he would like to invite the deaf couple, whoever they are, to his institute to fully explain what is 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 is making all of us responsible to humanity,” Kutsev said.
Yet Rebrikov is far from alone.
The application he is working on, which will include reams of research and detailed risk assessments, is to be filed under the authority of the Kulakov National Research Center for Obstetrics, Gynecology Perinatology, which houses a laboratory Rebrikov uses. The institute is run by Gennady Sukhikh, one of the most influential medical figures in Russia. Sukhikh, 72, was an early pioneer of controversial stem-cell therapies that cater to wealthy people seeking to extend their lives.
“Such great events should be approached very sensibly. Our country is moving strictly in accordance with international ethics,” Sukhikh said.
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 might expect if the experiment goes ahead. So far, they are not getting much, a person familiar with the matter said.
The Moscow Patriarchy published a “preliminary” position 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. 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 early last month. “We heal, just like Jesus did.”
When asked if he had any final comments for this story, Rebrikov said he is taking a break from speaking to the media. He would not say why.
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