One year later, the UK’s Nuffield Council on Bioethics concluded that germline editing might be “morally permissible” if it respected the well-being of the edited individual and did not exacerbate discrimination. “So long as heritable genome editing interventions are consistent with the welfare of the future person and with social justice and solidarity, they do not contravene any categorical moral prohibition,”38 the report said. Being British, the report politely suggested that talks on an international governance framework should happen “sooner rather than later.” The editor of the Lancet, Richard Horton, welcomed the findings. “Given the current state of the world, where national solipsism is on the rise and scientific developments can sometimes take place unchecked, there is no time to waste: the recommendations should be put into practice immediately.”39
For all of their prestige, authority, and credentials, ultimately the NASEM and Nuffield declarations came down to the results of small groups of experts with a strong Western bias trying to reach a consensus. As Sarah Chan, a bioethicist at the University of Edinburgh, put it, there is no shortage of edicts in genome editing. The National Academy listed seven principles, the Nuffield report two more. There were five dozen more reports stacked high in her office. “We don’t need more ‘principles’!” Chan said.40 But for JK, the refusal to issue a blanket prohibition of germline editing from either of these two prestigious bodies was tantamount to lifting a velvet rope. Or as Ed Yong put it, “it’s as if he took the absence of a red light as a green one.”
In October 2018, JK submitted an essay on his own ethical guidelines—built around the five bullet points he had shown Regalado and Kiani—to The CRISPR Journal. I communicated with Ryan Ferrell in advance and invited submission, thinking the essay might offer an interesting ethical perspective on genome editing from within China, although I’d never heard of JK, the group leader. The authors didn’t say anything about conducting clinical research or implanting human embryos, nor did they disclose any conflicts of interest. The absurdity of that became clear the moment the CRISPR babies story broke. Specter called JK’s ethical guidelines “admirable… if only He had spent more time reading them over, he might have skipped this stunt.”41 In retrospect, the commentary appeared to be a sly effort to lay the ethical groundwork for the blockbuster report on the CRISPR babies’ birth. A few weeks later, the journal’s chief editor, Rodolphe Barrangou, ordered a retraction.42
Where do we go from He? Or here? Two new highly credentialed commissions were launched in the aftermath of the JK fiasco. The World Health Organization (WHO) established an expert advisory committee tasked with “Developing global standards for governance and oversight of human genome editing.” The geographically diverse eighteen-member group kicked off in March 2019 in Geneva, Switzerland, under the leadership of Edwin Cameron, a South African supreme court justice, and former FDA commissioner, Margaret Hamburg. That first meeting stopped short of calling for a moratorium, but the committee did propose a global registry of germline editing research.
Another blue-ribbon committee was co-organized by NASEM and the Royal Society, chaired by Dame Kay Davies (no relation) and the Rockefeller University president Rick Lifton.43 Both efforts received rare bipartisan support on Capitol Hill. Senator Dianne Feinstein tabled a resolution condemning JK’s actions and supporting the work of the commissions. “It’s vital that the United States lead the way in creating ethical standards for gene-editing research,” said Senator Marco Rubio, who cosigned the bill.44
These reports will be important but unlikely to be the final word. We debate the pros and cons of human embryo editing without having any real comprehension of the research under discussion. In August 2018, I attended a conference at Cold Spring Harbor. (One of the sponsors creatively offered vials of mosquito repellant to help the throngs of scientists survive the outdoors.) During a debate on editing of human embryos, Dieter Egli, a Swiss developmental biologist at Columbia University who works with human IVF embryos,45 asked for a show of hands: “Who has any direct experience of working with human embryos?” Not a single arm went up. It was a stark reminder of how little we know about the earliest moments of life, even as we debate how we should proceed.
Amid the chorus of condemnation pointed at JK, one or two figures struck a different note. “It seems like a bullying situation to me,” commented George Church.46 “The most serious thing I’ve heard is that [JK] didn’t do the paperwork right.” Church concluded the saga could go in one of two directions: a medical tragedy on a par with the death of Jesse Gelsinger or a landmark advance in medical technology similar to the birth of Louise Brown. “As long as these are healthy, normal kids, it’s going to be fine for the family and for the field,” he said.
Samira Kiani, who had met JK, agreed that a piling on JK was “not going to be useful in the long term.” She said, “We’re not eliminating future trials [by vilifying JK], we’re just pushing them underground. Similar scientists will not come forward.”47 Kiani’s concerns made sense but her fears were misplaced. In Russia, as we’ll see, a bear was stirring. And in the Middle East, an early sign of genuine interest in replicating JK’s endeavors. One week after his revelation, on December 5, 2018, JK received an email from a fertility and gynecology clinic in Dubai. The email, shared publicly by William Hurlbut at the World Science Festival, read:
Dear He Jiankui,
Congratulations on your recent achievement of the first gene editing baby delivered by your application!… Our embryologist is interested in partaking in a course regarding CRISPR gene editing for Embryology Lab Application. Does your facility offer this type of course?…
Hurlbut advised JK not to reply.
I. The genetic code is read out in triplets, so if a DNA sequence is mutated by the insertion or deletion of 1 or 2 bases (any number that is not divisible by 3), it will fall out of phase, changing the corresponding amino-acid sequence. If a mutation is a small deletion or insertion of 3 bases (or any multiple of 3), then the results could still be devastating, but the sequence beyond the mutation will still be intact. A good example is the most common mutation in the cystic fibrosis gene, called ΔF508, the deletion of three bases that encode the amino acid phenylalanine.
CHAPTER 19 GOING ROGUE
Today, Nature is part of a huge German publishing empire, Springer Nature. But in 1990, when I nervously began my first job as a science editor, Nature was a quintessentially British company, tucked away off famed Fleet Street in central London. I arrived bright and early on my first day wearing a sharp Italian double-breasted suit, expecting to walk into the sleek high-tech headquarters of the world’s most prestigious science journal. My heart sank as I entered a Dickensian newsroom resembling a primary school classroom with desks crammed together, books and newspapers spilling onto the floor. The only other pinstripe suit belonged to chief editor John Maddox, his presence evident from the plume of cigarette smoke wafting from his corner office.
This was before the invention of email or the World Wide Web. Manuscripts were mailed in quadruplicate hard copies. Maddox would smoke a pack of Marlboros and drink a bottle (or two) of wine while meeting his weekly editorial deadline. Geneticist Magdalena Skipper was appointed editor in May 2018, becoming Nature’s first woman chief editor. Assuming the position, she had many issues on her plate—open access publication, data reproducibility, women and diversity in science. But nobody anticipated the problem that landed on her desk six months later.