He took a crash course in bioethics. Then he created CRISPR babies

HONG KONG — For someone who has caused a worldwide uproar over what many fellow scientists consider an ethical outrage, He Jiankui of China spent a remarkable amount of time discussing his work — which he claims led to the births of the first babies whose genomes had been edited when they were IVF embryos — with bioethicists, policy experts, and social scientists.

Two of them are father and son: Dr. William Hurlbut of Stanford University, a member of the U.S. President’s Council on Bioethics in the early 2000s, and J. Benjamin Hurlbut of Arizona State University, a biomedical historian. The Hurlbuts have discussed the ethics of human genome editing with He more than any other scholars in the West and probably the world.

Though neither Hurlbut supports what He has done, both came away from these conversations with an impression of He as a well-meaning and thoughtful scientist — and, as the younger Hurlbut put it, not a “rogue.”

William Hurlbut first met He (whom he calls JK) in January 2017, at a workshop that Hurlbut and CRISPR pioneer Jennifer Doudna of the University of California, Berkeley, held at Berkeley to discuss ways to educate and engage the public on issues raised by human genome editing. The Chinese scientist did not participate actively in group discussions (his English is somewhat halting). “I have no clear impression of what his views were on these crucial points,” said a leading American expert on science policy who asked not to be named because the workshop was private. He nevertheless left an impression of “great smoothness,” this scholar said, adding, “He and his more senior Chinese colleague clearly did not have deep misgivings about plugging ahead with gene editing, and I sensed no exposure to the sorts of ethical debates our guys are routinely involved in.”

The Berkeley workshop apparently piqued He’s interest in those debates. In the months after it, “JK came to see me several times at Stanford and we have talked deeply about his work,” Hurlbut told STAT at the International Summit on Human Genome Editing in Hong Kong. “We had several long conversations about science and ethics. He’s a very nice person; I liked him right away.”

He — who is on leave from Southern University of Science and Technology in Shenzhen — apparently found those conversations with Hurlbut helpful enough that, in a talk at a 2017 meeting at Cold Spring Harbor Laboratory, his list of acknowledgements included not only the usual graduate students but also Hurlbut.

The ethical issues the two discussed including those surrounding human embryo research. He asked Hurlbut whether opponents of such research in the U.S. were members of fringe groups, or reflected a majority view. “He wanted to understand what that was about,” Hurlbut said. “JK seemed very earnest about it, and listened carefully; he seemed to be trying to understand the arguments against it.”

Those arguments include that human life begins at conception, and therefore to experiment on even single-cell embryos, let alone to destroy them, is tantamount to taking a life. Sitting on the Stanford campus one day last year for one of half a dozen hourslong discussions over the last two years, Hurlbut recalled, He made his thumb and forefinger nearly touch and asked, “You mean to tell me that something this small is as important as someone’s child?”

He seemed skeptical of arguments about the unfolding majesty of a developing embryo, said Hurlbut, whose added that his views arise from both his Christianity and his understanding of biology: “He kept returning to the good that could be done” through embryo research of many kinds, though not specifically embryo editing.

They also discussed what Hurlbut calls prudence. “If the science does not progress in concert with a general understanding of it and acceptance of it by the public, it will create discord and distrust,” Hurlbut said. He countered with an impassioned description of how people with HIV are treated as social pariahs in China, and that alleviating their “social suffering” might justify racing ahead of public opinion.

The gene that He reportedly edited in the embryos that developed into twin girls affects the ability of HIV to infiltrate white blood cells. He has said that the goal was not to protect the embryos from contracting AIDS from their HIV-positive father, but to give them genetic armor that would protect them from HIV infection forever.

“I knew where he was heading and tried to give him a sense of the practical and ethical implications,” Hurlbut said. “But he kept returning to the good that could be done.”

He was not fully transparent with Hurlbut. When the two spoke most recently, this fall, “JK did not tell me that he had established pregnancies,” said Hurlbut, who believes He should have done so. “He didn’t reveal to me what the state of his research was, though I suspected he had either pregnancies or born babies.”

He has been harshly criticized for announcing news of the CRISPR’d babies in the press rather than a vetted, peer-reviewed, published scientific paper. Hurlbut was less judgmental: Reaching out to the Associated Press to break the news of his use of CRISPR on human embryos “doesn’t have much to do with self-promotion,” Hurlbut said. “Quite apart from matters of ethical principles or prudence, JK is a very nice person — humble and well-meaning, with an earnest desire to use his scientific knowledge for the good of others.”

And why did He violate what many scientists consider basic research norms? “I can’t get into his head, but he has a very earnest desire to move the science forward,” Hurlbut said. “My overall feeling is that he’s a well-meaning person who wants his effort to count for good.”

Still, Hurlbut said, “I disagree with what he did.”

Ben Hurlbut met the Chinese scientist at the 2017 Berkeley meeting that his father and Doudna organized. “We spent two days together there and talked quite a bit,” he said. Since then, they have exchanged emails, including about a survey on attitudes toward genome editing in China on which Hurlbut wrote a commentary. The survey found widespread ignorance about the science of genome editing but widespread public support for using it to both treat and prevent disease. (The survey did not ask about embryo editing, however.)

One finding that caught He’s attention: 73 percent of the Chinese surveyed supported genome editing to prevent HIV infection. But 95 percent of those with HIV did.

“Clearly he recognized that his work would be controversial,” Ben Hurlbut told STAT by email. “But for all the unease and even outright condemnation from his scientific colleagues, his actions reflect, at least in part, motivations that are widespread in the conduct of science. His research pushes the envelope, seeks to have a significant impact, and aims to make headlines and earn recognition.”

While not defending what He did, Hurlbut said, “it’s wrong to call him a rogue when he’s acting in line with” a scientific culture “that puts a premium on provocative research, celebrity, national scientific competitiveness, and firsts.”