China’s Bioethics Struggles Enter the Spotlight

If a researcher’s claim to have used CRISPR to genetically edit babies is true, it will confirm some people’s worst fears about science in China.

Screen grab of He Jiankui video.
The He Lab/YouTube

A few years ago, a young associate professor named He Jiankui wrote me, asking for help promoting his research. At the time, I didn’t think much of it. I was then a China-based news correspondent for Science magazine, and I occasionally got emails from scientists who took me for a journal editor. The entreaty stood out only for its urgent tone. He told me that his research group had worked “day and night” to sequence the H7N9 virus, a lethal strain of avian flu that had crossed over to humans in eastern China. “I have drafted the manuscript and want to publish it in Science or other journals as soon as possible,” he wrote.

I thought back to that email on Sunday night, when news broke that He Jiankui claimed to have made the world’s first genetically edited babies, using the technique CRISPR-Cas9, which allows researchers to alter an organism’s DNA by adding or deleting genes. He said that he recruited seven couples in which the father had HIV to undergo in vitro fertilization. During IVF, he said, he altered the genetic makeup of the embryos, aiming to increase the embryos’ resistance to the virus—a tweak that carries significant risks. The experiment has so far yielded one healthy pregnancy, he claims, resulting in the purported birth of twin girls named Nana and Lulu. Instead of staying quiet until his work could be published in a peer-reviewed publication, he gave an interview to the Associated Press and posted a series of YouTube videos touting his research. “The girls are as safe and healthy as any other babies,” he said in one. “I understand my work will be controversial, but I believe families need this technology and I’m willing to take the criticism for them.” He urged viewers to write to an email address he provided for Nana and Lulu, whose worries, once they learn how to read, may soon extend far beyond responding to fan mail.

CRISPR has revolutionized areas ranging from cancer treatment to plant breeding. For years, scientists have understood that the technique might eventually be used in human reproduction, but the prospect of actually doing so conjures the test-tube castes of Aldous Huxley’s Brave New World, giving many researchers pause. The National Academy of Sciences recommends restricting gene-editing research in human embryos to situations involving clear unmet medical needs. According to many critics, HIV does not meet that standard. In the experiment He claims to have conducted, the risk that infected fathers would have actually transmitted the virus to their children was low. The edit he performed, moreover, could make the twins more susceptible to other infections, like West Nile virus and Japanese encephalitis. In the wake of the news, CRISPR inventor Feng Zhang of the Massachusetts Institute of Technology called for a moratorium on gene-edited babies.

The development will likely confirm some people’s worst fears about science in China. For several years, Western commentators have worried that gene-edited babies would emerge first there. In some cases, the hand-wringing took the form of cultural essentialism. This was helped along by commentators inside China who pointed to a distinct Confucian ethics, where the needs of the community come before those of the individual and embryos do not have rights. In fact, China’s scientific community encompasses a diverse range of views, and Confucius did not give clear guidance on the ethics of tweaking our DNA. The more mundane reality is that at many Chinese institutes, informed consent protocol is poorly implemented—and informed consent, as the bioethicist Nie Jing-Bao has argued, is about power, not culture. Combine that with a history of mixing reproduction with eugenics, and of subordinating the desires of would-be parents to those of scientists and the state, and the atmosphere is ripe for a stunt like the one He Jiankui has pulled. (Also see the case of South Korean stem cell researcher Hwang Woo-suk, who in 2004 gained notoriety for claiming to have cloned human embryonic stem cells. It later emerged that much of his research had been faked—but not before Western commentators had attributed his rise to a Confucian work culture and to Korea’s “huge supply of fresh human eggs.”)

In 2013, the same year that He wrote me, I toured a hospital in Guangxi region that was implementing a massive program to screen for beta thalassemia, a debilitating genetic disorder that disproportionately affects the Zhuang minority group. Part of the effort entailed testing would-be couples for the disease and then counseling them on the odds that they would give birth to a child with the condition. Beta thalassemia can be fatal, and there is no question that eliminating it would save families a lot of grief. But the Guangxi program also included prenatal screening, and mothers found to be carrying fetuses with the disease were strongly encouraged to abort. The couples I spoke with in hospital waiting rooms told me that they agreed to all of this willingly, but it was hard to know what to make of their remarks. Decades of population planning had numbed people to government intrusion in their reproductive lives. For members of minority groups in particular, programs with eugenic aims are fraught.

Later, I was unsurprised to hear that a team at Sun Yat-sen University in Guangzhou had tried using CRISPR to correct a mutation associated with beta thalassemia. That group worked with nonviable embryos and had mixed success. Nonetheless, the study was a precursor to the experiment He Jiankui now claims to have done (although targeting embryos with beta thalassemia would have been less of an ethical leap than editing the genomes of healthy embryos to make their cells more resistant to HIV).

The informed consent agreement for He Jiankui’s experiment describes it as an “AIDS vaccine development project” and used highly technical language to describe the procedure that patients would undergo. If the reality for some Chinese patients is that such agreements are glossed over, densely written, or never read, the reality for some researchers working in the country is that the appeal of cutting-edge trials is too great to resist. It is not just Chinese scientists who can be blinded by the lure of quick breakthroughs. Several of the most notable breaches of informed consent on the mainland have involved Western researchers or co-authors. He Jiankui reportedly collaborated with Rice University bioengineering professor Michael Deem, and Deem sits on the scientific advisory boards of two companies. (Rice is now reportedly investigating Deem’s involvement in the experiment.) When people say that the usual rules don’t apply in China, they are really referring to authoritarian science, not some alternative communitarian ethics.

For the many scientists in China who adhere to recognized international standards, the incident comes as a disgrace. He Jiankui now faces an ethics investigation from provincial health authorities, and his institution, Southern University of Science and Technology, was quick to issue a statement noting that He was on unpaid leave. The page where the scientist posted his first YouTube video quickly filled up with angry comments. “As a Chinese student I feel ashamed of this person,” one wrote. More than 120 scientists separately signed a statement published in the Chinese press saying that they “strongly condemned” the experiments. But by then the damage was done. The ambitious researcher had been cast in a role, and he was determined to play it.