Nevertheless, this was a world first so Huang could be forgiven for trying his luck by submitting his group’s report to Nature and Science. Both journals rejected the manuscript in quick succession. With rumors of the Chinese study spreading, Nature published an op-ed written by Ed Lanphier, CEO of Sangamo, and colleagues titled “Don’t Edit the Human Germline.” Lanphier, Fyodor Urnov, and colleagues called for a ban on editing human embryos, partly for moral and ethical reasons but also because of the negative impact it could have on the future of somatic gene editing.11 Huang eventually published his report in a China-focused journal called Protein & Cell.12 It is unclear how rigorous the peer review process was: the time from manuscript submission to acceptance was just forty-eight hours.
Huang had kept a low profile since his fifteen minutes of fame in 2015, so his willingness to be interviewed was a minor coup for Regalado. As the filmmakers settled into their Guangzhou Airbnb, Kiani received a surprise email from Ferrell. Earlier in the year, Kiani had asked Ferrell for access to film one of Sangamo’s gene therapy patients. In his email, Ferrell began by apologizing for not being able to help her film project, but all was not lost. He continued:
I’ve taken a post in a Chinese lab working on the safety of CRISPR gene editing at the time of embryo fertilization. My goal is to push the lab to engage the world more directly in science and ethics given the controversial nature of the work and the potential to disrupt others working on somatic therapies. Would you be open to reconnecting…?13
Kiani couldn’t believe her luck. Ferrell’s new Chinese lab was in Shenzhen, just a sixty-minute train ride from Guangzhou. “We are in China! Why don’t we meet?” she replied. Ferrell agreed to get together the next day, adding that he would be traveling with a Chinese colleague. Regalado did what any enterprising reporter would do: he googled the name of Ferrell’s companion, who had been copied on the email.
It was He Jiankui.
The meeting took place in the afternoon at the Westin Hotel, a short walk from the major train station in Guangzhou. Shadid led the group to a dimly lit corner of the lobby, telling the hotel staff that they were guests awaiting a very important Chinese scholar. Ferrell allowed Regalado to join, providing their conversation was off the record.
JK was initially reserved, wary of the intense American journalist scribbling notes. His English was passable, having spent four years in the United States. After a while, Regalado asked Shadid to switch to Mandarin. Shadid asked if JK was interested in taking part in the film, opening up his life “to show the world that he is a person first and a scientist second, with dreams and a moral point of view.” Shadid wanted to show a leading Chinese scientist as being similar to his Western counterpart, rather than the stereotypical boogeyman, “the personality-free Chinese lab rat with no individuality or moral agency.”
JK and Ferrell insisted they did not want to be portrayed as “evil scientists doing something immoral.” They wanted to change the perception of how China’s work in gene editing is perceived in the West and give it legitimacy. Kiani and Shadid suggested a return visit in the New Year, when they could film JK with his family. He seemed to like this idea. “He had a crazy twinkle in his eye,” Regalado recalled. He talked about a public opinion survey his team had conducted showing the Chinese public was largely in favor of gene editing. Ferrell then handed Kiani a sheet of paper. It was a list of five ethical principles that JK felt should shape the future of genome editing in human embryos. They hoped the guidelines would be published just before the Hong Kong summit. They were:
Empathy for patients—for some families, early gene surgery may be the only way to cure disease.
Only for serious disease, never for vanity.
No one can control a child’s life. A gene-edited child retains the same rights as a “normal” child.
Genes do not define us. DNA does not predispose us.
Everyone deserves freedom from genetic disease, regardless of wealth.
As the discussion turned to possible examples, JK said that editing the CCR5 gene to in effect immunize babies from getting HIV would fit his ethical criteria. HIV was a huge public health problem in China, particularly in western China. He opened some slides on his laptop, which showed preclinical gene-editing experiments on a few hundred human embryos. It was debatable, however, whether targeting CCR5 was tantamount to curing or merely preventing a disease. Privately, Regalado thought it was an extremely weak choice.
While JK believed editing this gene offered an important health benefit, the primary objective had to be safety. JK’s expertise was in genome sequencing, which lent him some credibility in screening for errant edits. The other nagging issue was mosaicism, a phenomenon that occurs when not every cell in the developing embryo carries a particular gene variant or edit. JK acknowledged the concern but he didn’t think it was a showstopper. He was more irked by one of Regalado’s magazine stories, which featured a full-page illustration of a baby reduced to a series of billiard balls or atoms. JK said the image, which looked like the baby was being blown apart, was disgusting.
“Is this being tested in humans?” Kiani asked him. “We have no human trials,” JK replied, while hinting that his plans would depend on the kind of response he received at the summit in a few weeks’ time. But later, JK conceded there was a gene-edited monkey fetus in a womb somewhere. So how close was he to producing a human baby? “Almost there,” he said. Regalado shivered. Almost there…
After JK and Ferrell left the hotel to return to Shenzhen, Sheehy turned on his camera while his friends exhaled and debriefed. “What just happened?” Kiani asked, her head spinning. “I think we just found out about this secret embryo editing project that we were looking for,” Regalado said incredulously. “It was a hell of a meeting.” Here, halfway around the world, he had stumbled upon the “promised land,” meeting the ambitious young scientist running one of the largest human embryo editing programs in China. Moreover, he had signaled his intentions to move from monkeys to humans. But when?
The Huang embryo editing report in 2015 triggered a serious worldwide reaction led by Doudna, culminating in a major international ethics summit in Washington, DC. “The unthinkable has become conceivable,” David Baltimore had cautioned opening the meeting. How would we as a society choose to use this capability—if at all? That put China back on its heels a bit. “They went from leading the science to being the caboose on the ethical conversation,” Regalado said. He picked up the sheet of paper listing JK’s five ethical guidelines for human germline editing. “This document is a list of moral principles after they did the experiment of editing embryos!” he said. “This is the necessary groundwork for producing a child with this technology.” JK was trying to prevent an ethical backlash by retrospectively framing his “principles” to stay one step ahead.
Regalado felt it was only a matter of time before we were talking about a genome edited fetus in a womb somewhere. “The monkey is the tryout for the real thing. We might be having that conversation in the near future.” Shadid agreed. Chinese government regulations meant there was only ad hoc enforcement, he said. “The Government can step in when they want and stop whatever’s going on or they could try the wait-and-see approach.”
Shadid said JK could be the human face of science and medicine in China, “the guy behind the first gene edited baby.” They could film JK in his own words, the man “behind editing the first baby while holding his baby daughter.” It was a tantalizing prospect. “I’ve never seen a more affable, expressive scientist in China,” said Shadid, not that the bar was particularly high. CCR5 offered a safe target and HIV a prevalent disease. To win the Chinese Central Committee’s approval, JK was going to need bioethicists, government officials, and hospital administrators to approve the clinical trial. “They need a reason why this is necessary. It all adds up.”