The affair of the gene-edited babies rumbles on

ON NOVEMBER 26TH He Jiankui, a DNA-sequencing expert at the Southern University of Science and Technology, in Shenzhen, claimed he had orchestrated the birth of the world’s first gene-edited babies: twin girls who arrived in early October. That claim brought the fury of the world raining down upon his head and he has since disappeared from view—though he has not, apparently, been arrested as some news reports have suggested.

Exactly what Dr He achieved has also been called into question. He says he used a gene-editing technique called CRISPR-Cas9 to disable, in one of the twins, called Nana, both parental copies of a gene called CCR5. This gene encodes a protein used by HIV to enter cells. If Dr He’s claim is true, he may have conferred on Nana immunity to infection by HIV, thus protecting her from AIDS, which HIV causes. Moreover, by editing the genes of a fertilised egg—from which all body tissues, including the ovaries, are derived—he has done this in a way that can be passed down the generations, a process known as germ-line editing.

Nana’s sister Lulu, Dr He says, has also had her genome modified, but with only partial success in that only one parental copy of CCR5 was disabled and so she remains unprotected. However, an independent assessment of Dr He’s data by several gene-editing experts, including Kiran Musunuru of the University of Pennsylvania, suggests the experiment achieved only partial success in both twins.

On the face of things, Dr He may have broken the rules in China (and would certainly have broken the law in some countries, had he conducted his experiments elsewhere). An official investigation led by the university is under way into the details of the case, and will report in due course. But, regardless of the specifics, the whole affair prompts wider questions about the culture and ethics, in both China and the rest of the world, of the rapidly developing area of gene editing.

Such questions will be debated by the Global Observatory for Gene Editing, which will be launched next spring in Cambridge, Massachusetts. The project, masterminded by Sheila Jasanoff of Harvard University and Benjamin Hurlbut of Arizona State University, in Tempe, who are both social scientists rather than geneticists, will try to broaden discussion about the technology. The idea is to involve ethicists, legal experts and representatives of governments and civil society, as well as scientists, thus enabling people from all of these fields to see the others’ points of view. By coincidence, Dr Hurlbut is particularly close to the He affair. He has met and corresponded with Dr He. Also, his father, William, is a bioethicist and physician at Stanford University, in California, where Dr He worked after he had completed his PhD. According to William Hurlbut, “Dr He sought me out because he had genuine concerns about the ethical implications of his work. He really wanted to understand.”

To many researchers, it was unsurprising that the He affair happened in China. “Ethical governance has long been the Achilles’ heel of China’s scientific endeavour,” says Lei Ruipeng, executive director of the Centre for Bioethics at Huazhong University of Science and Technology, in Wuhan. Regulatory loopholes, lack of accountability, lack of penalties for violating rules and a lack of awareness of the rules among health-care staff and the public alike have earned the country a reputation for being biotechnology’s Wild West.

The rampant application of unproven stem-cell therapies, for example, made China a magnet for medical tourism until the government banned such practices in 2012. In the same year a trial on children, without the consent of their parents, of the nutritional effects of genetically modified rice, sparked public outcry. More recently, somatic gene-editing therapies (those that modify the body cells of people already alive, rather than the cells of those yet to be born) have been mushrooming without always having had proper approval. Moreover, many Chinese scientists feel they are in a competition with the West that has nationalistic overtones, and have even more incentive to do high-visibility work as a consequence. In light of this the CRISPR-babies scandal was, says Dr Lei, a “time bomb waiting to explode.” A pressing question in her mind is, “are there other time bombs lurking around?”

Not everyone, though, is inclined to think this is the whole story. In Dr Musunuru’s view Dr He—and anybody who may have helped and encouraged him—are the products of a general scientific culture (not merely a Chinese one) that puts a premium on competition, sensational research and being the first. As he puts it, “If you do something that is very attention-raising, you are more likely to get funding. If you do something truly revolutionary, you might get a Nobel prize.”

Benjamin Hurlbut views the He affair as “a prism for seeing some of the profoundly troubling issues of international science.” William believes that despite Dr He’s mistake their conversations at Stanford revealed a man who was aware of the ethical issues. What struck both Hurlbuts was how little foundation Dr He had for clear ethical thinking. “This was clearly not part of the training he received,” in either China or America, says William Hurlbut. “I was trying to give him what he had never received—a sort of road map of the kind of issues and questions behind his work—but I couldn’t possibly do what his training didn’t do in a few conversations,” he says. “He still felt the pull of doing what he both believed was good and would earn him an international reputation in science.”

Benjamin Hurlbut observes that Dr He is just one of many scientists who want to understand the ethical implications of their work but do not have the training or resources to think them through. The gene-editing observatory, with its more wide-reaching approach to expertise, will seek to fix that. How to handle germ-line editing—indeed, whether it should ever be permitted—is a problem given urgency by Dr He’s activities. As those activities demonstrate, it is not one that scientists can be trusted to deal with by themselves.