Wang Jian, the billionaire cofounder of BGI, envisions a future society in which ubiquitous genetic testing will help eliminate a plethora of hereditary disorders. “If all the world’s children are able to receive genetic testing and prediction for [deafness], [blindness] and related diseases, all these genetic diseases will not exist anymore. How big an impact this will be to humankind!”24 In her book, One Child, Mei Fong quotes the proprietor of an egg donor agency in California whose Chinese clients “almost always want taller, at least 5-foot-5. And they have questions about eyelids.” Fong concluded that “an openness to gene editing’s worst excesses may prove to be [China’s] one-child policy’s most unfortunate legacy.”25
China is most likely to abide by international ethical standards “when its membership in the global political and scientific community depends on it—in other words, when it has no other choice,” Cheng writes.26 For now, ethical debates and commissions dominated by Western scientists and ethicists won’t stop it. JK wasn’t inclined to wait patiently until every safety concern had been addressed and the world community deigned to give him the green light. As he said, “If it is not me, it will be somebody else.”
Benjamin Hurlbut, who corresponded extensively with JK for a spell after his house arrest, also disputes the popular “rogue” narrative. JK’s motivations were so familiar they were almost mundane. “Far from ‘going rogue’ and rejecting the norms and expectations of his professional community, He Jiankui was guided by them.” If anything, Hurlbut argues, the “rogue” label belongs not to JK but to “a scientific community that asserts that it alone has the authority to determine what it should and should not do, racing ahead of ethical concerns and public debate.27
Hurlbut concludes that JK was following a familiar path that puts “a premium on provocative research, celebrity, national scientific competitiveness, and firsts.”28 Hurlbut writes:
He was driven by the high-octane milieu of contemporary biotechnology, both in the United States and in China. He internalized ideas that led him to believe that his experiment would elevate his status in the international scientific community, advance his country in the race for scientific and technological dominance, and drive scientific progress forward against the headwinds of ethical conservatism and public fear…
JK, like many if not most scientists, had aspirations of fame and fortune. He jumped into an area of medical research that was cutting-edge and highly controversial, for which he had neither the technical skills nor maturity to handle. We may never know if he damaged the health of the CRISPR babies. His dreams of scientific immortality were reduced to infamy.
As the scientific community reacted to the CRISPR babies’ bombshell, there were ample concerns that someone else might attempt to follow in JK’s footsteps. “Who is to say that there won’t be one hundred other similar types of experiments that will take place, not only in China but in other medical tourism hotspots?” said Feng Zhang.29 Around the world, there are hundreds of private, unregulated stem cell clinics luring patients with promises of “tomorrow’s treatments today” for everything from chronic back pain to Alzheimer’s disease. It would be no surprise if CRISPR clinics, as JK had planned, start to appear.
In testimony for the NAS commission, Sandy Macrae, CEO of Sangamo, said there were two good reasons that no legitimate biotech company would attempt germline editing. First, society wasn’t ready for it. Second, “there isn’t an obvious disease we want to go for, there isn’t a compelling rationale,” he said.30 But Macrae did note that editing a single-cell embryo has one potentially big advantage over trying to edit millions of cells in an adult patient—a reduced chance for an error that could lead to cancer.
In the Spring of 2019, as Zhang and others had grimly anticipated, another scientist declared his intentions to perform germline editing. Like JK, Denis Rebrikov, head of the gene-editing laboratory at Russia’s largest fertility clinic, the Kulakov National Medical Research Center in Moscow, was little known outside his country. He made his first public proposal to edit human embryos a year before the CRISPR babies were born. Like JK, his initial idea was to target CCR5, specifically embryos from HIV-positive women who do not respond to anti-HIV drugs. “I’m crazy enough to do it,” he told Nature.31 His preliminary efforts using CRISPR in nonviable human embryos set off alarm bells. “Where is the evidence that he knows how to do this?” asked Lovell-Badge. “Rebrikov needs to hear the concerns of scientists, clinicians, ethicists, and regulators before he falsely gives hope to patients seeking solutions.”32
But Rebrikov, a former champion in sambo, a Russian martial art, suplexed his critics. “We can’t stop progress with words on paper,” he said.33 Russia might not be a free country politically, he said, but it was very free in science. Rebrikov quoted a Russian saying: “If you have success, you are right.” If Lulu and Nana were healthy, JK might yet salvage his reputation. And he wouldn’t rule out using genome editing for enhancement. “These people who are opposed [to enhancement] want to have all these things in their children but only by ‘divine providence,’ not by science. They are liars or stupid.”
Rebrikov changed tack to focus on an inherited form of deafness.34 Mutations in the gene GJB2, which encodes a protein called connexin 26, cause hereditary hearing loss. The incidence is fairly high in Russia, where the mutation is thought to have spread from west to east over thousands of years. The most common GJB2 mutation is the deletion of a single letter in the sequence. About ten babies are born each year with hereditary deafness resulting from inheriting two dysfunctional copies of GJB2. Rebrikov identified several deaf couples in which both partners were homozygous for GJB2 mutations, meaning that PGT was not an option to produce a hearing-enabled child. If he could use CRISPR to repair one copy of the gene, the child should be able to hear. Rebrikov put the price of germline editing at about 1 million rubles, or $15,500. “I can see the billboard now: ‘You choose: a Hyundai Solaris or a Super-Child?’ ”35
Six months after the Hong Kong summit, a small group of Russian medical experts and officials discussed Rebrikov’s plans in a closed-door meeting in Moscow with a very special guest—Maria Vorontsova, a pediatric endocrinologist and, more importantly, Vladimir Putin’s daughter. A few months later, Rebrikov defended his plans in a meeting at the Russian Academy of Sciences’ Institute of Philosophy.36 One woman seriously considering Rebrikov’s trial, known as Yevgenievna, was devastated when her young daughter was declared deaf. Yevgenievna is aware of the risks of genome editing. “Which is better: to hear music or be suffering from cancer? That’s the question.”37
Unlike JK, Rebrikov was fully transparent about his intentions—no secret circle of trust here. He gave interviews to a string of science journals, he had more relevant expertise, and the medical case had more merit than JK’s cause. But in July 2019, the WHO director-general, Tedros Ghebreyesus, stated that “regulatory authorities in all countries should not allow any further work in this area until its implications have been properly considered.” The Russian Ministry of Health evidently took note, responding that granting Rebrikov permission to undertake clinical germline editing would be premature and irresponsible.