Does a Chinese scientist's claim that he used CRISPR to create two baby girls resistant to HIV show that research ethics here are more permissive than elsewhere? Many Chinese researchers dispute the notion, as do experts elsewhere. “I still believe there is no ethical divide between China and the West,” says Reidar Lie, a bioethicist at the University of Bergen in Norway who has written extensively about China's bioethical issues. “This is clear,” he says, from the reactions of ministries, institutions, and scientists who have forcefully condemned the study, by He Jiankui of the Southern University of Science and Technology (SUST) in Shenzhen, China. Lie adds that He “shares the same characteristic as many other scientists at the frontiers of knowledge: overestimating the benefits of their own research, and underestimating the risks.”
Yet in the wake of the scandal, some are calling for tighter regulations and better oversight. “There is an urgent need for a national ethics review committee,” former Vice Minister of Health Huang Jiefu told Global Times, a daily tabloid and website controlled by the Chinese Communist Party. Currently, every hospital and institute has its own ethics committee, but many lack the medical, ethical, and legal expertise to review cutting-edge procedures, Huang said. Lie agrees that there are gaps in China's regulatory efforts, but says the existing framework just needs strengthened enforcement powers and upgraded expertise.
Many questions remain about He's work, including where he did it, how it was financed, and whether his scientific claims are valid (see main story, p. 1090). An official investigation by a joint team from Guangdong province and the city of Shenzhen is ongoing, and SUST has announced its own inquiry. He himself has not publicly spoken since he presented his work at a gene-editing meeting on 28 November and did not respond to requests for comment. But some details about his work have emerged.
In an online report that was later removed, for instance, Sanlian Life Week magazine described how He turned to the HIV/AIDS support network Baihualin China League to help recruit couples in which the man was infected with HIV. One told the magazine he and his wife dropped out of the study because he was “unwilling to be a guinea pig,” according to a copy of the article shared on Twitter. The network's head said he regretted his collaboration with He: “I am very worried about these families and children,” he wrote in a statement.
Until now, China's share in the CRISPR revolution was a source of national pride. Chinese scientists were the first to create gene-edited monkeys, in 2014, and produced the first ever gene-edited human embryos a year later. In 2016, they became the first to start clinical trials using CRISPR to alter genes in somatic cells, which are not passed on to the next generation; today, 10 CRISPR-related trials to treat diseases such as cancer and HIV/AIDS are recruiting patients in China, more than in the rest of the world combined. But the scientific community “was nearly unanimous” that He's work crossed a red line, says Wei Wensheng, a molecular biologist at Peking University in Beijing. In a statement typical of many issued over the past week, the Chinese Academy of Medical Sciences in Beijing said gene editing is “still at a basic stage,” and that changing the germ line should be off limits.
He appears to have violated the Ethical Guiding Principles on Human Embryonic Stem Cell Research, a brief document promulgated jointly by the health and science ministries in December 2003 that prohibits implanting human embryos created for research purposes into the womb. But the guidelines do not specify any penalties for noncompliance. “In some countries, such activity would lead to imprisonment, but China still lacks a relevant legal and policy framework,” bioethicist Zhai Xiaomei of the Chinese Academy of Medical Sciences and Peking Union Medical College told China Science Daily. She called for politicians to strengthen legislation as soon as possible.
Meanwhile, the news fascinated the Chinese public, according to the website What's on Weibo, which tracks China's most popular social media platform. “In 100 years time, this might be considered pioneering work,” said one comment. “This is unfortunate for the children, it is unfortunate for China, and it is unfortunate for mankind,” another Weibo user countered, reflecting the majority view.
“What He did will almost inevitably have a backlash from the public and possibly from regulators,” says Wei, who worries that the actions of a single research group gone rogue will trigger new rules that could have punishing implications for legitimate research.
Dennis Normile
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07 Dec 2018 | 764 words
