NIH Director Francis Collins accused JK of trampling on ethical norms, while reiterating that NIH did not support the use of gene-editing technologies in human embryos. “The project was largely carried out in secret, the medical necessity for inactivation of CCR5 in these infants is utterly unconvincing, the informed consent process appears highly questionable, and the possibility of damaging off-target effects has not been satisfactorily explored,” he charged.16 A letter to the Lancet signed by senior members of the Chinese Academy of Medical Sciences argued that JK had violated multiple government regulations on the ethics of human stem cell and sperm banks dating back to 2003.17
On social media and the blogosphere, reaction was even more intense. UCLA stem cell biologist Paul Knoepfler decried the use of the term “genome editing” to describe JK’s work. “He did not gene edit these babies… what He did really was to mutate those twin girls, particularly since he was changing a normal wild type gene to a mutant form. We should call it what it is.”18 British broadcaster and author Adam Rutherford called JK’s actions “morally poisonous.” Oxford University philosopher Julian Savulescu said the CRISPR babies were being used as “genetic guinea pigs. This is genetic Russian roulette.”19 You get the picture.
The former FDA Commissioner Scott Gottlieb warned of future government intervention. “The scientific community failed to convincingly assert, in this case, that certain conduct must simply be judged as over the line.” And veteran chemistry blogger Derek Lowe called JK’s actions criminal. “This experiment should not have been done yet,” Lowe wrote. “We’re going to alter the human genome, of that I have no doubt. But there was no reason to alter it now, like this, under these conditions. He Jiankui has just made life more complicated for everyone working in the field, and for what?”20
A few hours before JK’s public appearance, I received an email from Ryan Ferrell suggesting we meet after JK’s talk at a hotel on the south side of Hong Kong Island. Following JK’s exit, I suspected the afternoon sessions would be an enormous anticlimax, so told Ferrell I’d meet him that afternoon. It was a thirty-minute taxi to Ferrell’s hotel, which puzzled me when there were so many hotels near the university. I entered his small hotel room to find, sitting on the bed, the documentary team, Samira Kiani and Cody Sheehy, who had filmed JK’s speech and interview a few hours earlier. Cases of video equipment took up most of the floor space, so I sat on one. Ferrell apologized for the remote location but he was literally on the run. His visit to Hong Kong had turned into a scene from The Bourne Identity, as enterprising Japanese journalists had twice located Ferrell’s hotel and forced him to take evasive measures.
Ferrell was clearly exhausted and emotional, at times distraught. He blamed himself for the situation that JK found himself in. Ferrell had moved to Shenzhen on a mission. Part of his motivation was his sister, who suffers from a genetic disorder. Ferrell had wanted to help showcase the groundbreaking medical work of gene-editing trailblazers like JK. It was Ferrell who agreed to let Regalado sit in on JK’s meeting with the filmmakers a few weeks earlier. And he blamed himself for not being alert to the posting of JK’s CCR5 trial notice on the Chinese clinical trial registry website, which turned out to be Regalado’s smoking gun.
After an hour or so talking, we went to the hotel bar for a much-needed drink. Ferrell motioned to the Nature manuscript in his briefcase. Forty-eight hours earlier, he’d been confident that JK’s report would soon be published. But JK’s inability to provide any compelling rationale for his actions suggested that was unlikely. One option was for JK to post his manuscript on a preprint repository such as bioRxivI, a popular venue for scientists to post drafts of their manuscripts. But given the growing scandal, bioRxiv’s administrators were understandably reluctant about showcasing such a controversial article, especially given the ethical issues. Those concerns were summed up by the Mayo Clinic’s Stephen Ekker: “Sorry preprint enthusiasts,” Ekker tweeted, “but there needs to be an ethics check first. Stop giving [He] a megaphone, or others will do the same.”21
I disagreed. I didn’t see any point in sweeping JK’s actions under the carpet. It was far too late for that.
The morning after.
Day three of the summit felt like a heavy hangover after a raucous all-night party. The auditorium was less than half full and most of the media had dispersed in the wake of JK himself. One Asia-based reporter for ABC News stopped me to ask if I’d seen Michael Deem. She looked upset when I told her Deem hadn’t attended the conference and continued her search.
The one major item on the agenda was for the summit’s organizing committee, including Doudna, Porteus, Daley, and Lovell-Badge, to deliver a closing statement when almost everything that could be said had been already. With the full committee seated on stage, Baltimore read the statement, which had been hastily drafted the previous evening.22 The committee judged JK’s work to be “deeply disturbing” and “irresponsible,” while calling for an independent assessment “to verify this claim and to ascertain whether the claimed DNA modifications have occurred.” The glaring flaws in JK’s study included “an inadequate medical indication, a poorly designed study protocol, a failure to meet ethical standards for protecting the welfare of research subjects, and a lack of transparency in the development, review, and conduct of the clinical procedures.”
Given the current state of the technology, Baltimore said the risks were “too great to permit clinical trials of germline editing at this time.” But not forever: germline editing could become acceptable in the future if there was strict independent oversight, a compelling medical need, long-term patient follow-up, and attention to societal effects. And echoing Daley’s earlier remarks, there should be a translational pathway setting standards for preclinical evidence and editing accuracy, the proficiency of the investigator, and robust partnerships with patients and advocacy groups.
But the committee’s call for an independent investigation rang hollow. Who would do the investigating? The committee lacked any jurisdiction to entice any cooperation from JK. When I asked Baltimore what actions he hoped to see from JK, he stressed the importance of examining the CRISPR babies, but that would be difficult given the absence of any public information about the twins’ identities and whereabouts.
We soon learned that JK was in no position to cooperate with any sort of external inquiry. In the weeks following his return to Shenzhen, although in email contact through his gmail account with reporters23 and journal editors, his precise whereabouts were unknown. Several media outlets reported that JK had disappeared, based on his hasty departure from Hong Kong and the unceremonious removal of his university web page, where he had invited people to write to the world’s first gene-edited twins at a special email account: DearLuluandNana@gmail.com.
Speculation about JK’s whereabouts was understandable, although suggestions he had been executed seemed fanciful. In 2018, several prominent figures in Chinese society had “disappeared,” sometimes for months on end, including Meng Hongwei, the former president of Interpol. One of China’s most famous actresses, Fan Bingbing, vanished for nine months before returning to public view in April 2019, offering a groveling apology for tax evasion.
Four weeks after his Hong Kong bombshell, New York Times reporter Elsie Chen went searching for JK on the SUSTech campus. Acting on a hunch, she visited the main guest house, typically used to house faculty and visitors. That’s where she fortuitously spotted JK on the balcony of a fourth-floor apartment and was able to grab a couple of photographs.24 He was guarded by a dozen unidentified men who barred reporters from getting too close. Inside the apartment was a woman, presumably his wife, and a young baby. The lobby was full of guests checking in for a conference, oblivious to the fact that China’s Most Wanted was under house arrest in their midst.