Scientist behind world's first genetically modified babies is "proud" of his work
On Wednesday, Chinese scientist He Jiankui took to the stage at the Second International Summit on Human Genome Editing amidst a maelstrom of controversy surrounding his recent revelation of creating the world's first genetically edited babies. As He announced pride in his work, the Chinese government called it "shocking and unacceptable."
After news broke earlier in the week revealing the birth of the first ever gene-edited human babies, all eyes turned to the Second International Summit on Human Genome Editing in Hong Kong. He Jiankui, the mysterious figure behind this research was set to present his work to the public after toiling in secrecy for a number of years.
He was introduced by famous UK scientist Robin Lovell-Badge, and Lovell-Badge reiterated during his introduction that the conference organizers were unaware the work to be presented included discussion on implanted embryos. "In fact," Lovell-Badge added, "he had sent me the slides he was going to show in this session and it did not include any of the work that he is now going to talk about. There was some clinical data, but nothing involving implanted human embryos."
He's subsequent presentation was heavy on scientific detail and light on moral or ethical defenses, however, the scientist was pressed on these issues during a comprehensive Q&A session. Asked why the research was conducted in such as quiet, under-the-radar way, He continually suggested scientists have a responsibility to pursue work that will help eliminate disease.
"Do you see your friends, your relatives who may have – a genetic disease – the way I see it, those people need help," said He. "There are millions of families with inherited diseases or exposure to infectious disease. If we have the technology and can make it available, then this will help people. When we talk about the future, first it's transparent to open and share what knowledge I accumulate, to society and to the world. It is up to society to decide what to do next."
He was also questioned about whether there were any other gene-edited pregnancies associated with his work. Here the controversial scientist quietly dropped a starkly straightforward confirmation replying, "There is another one, another potential pregnancy." No other information on this potential third genetically edited baby was forthcoming at this stage.
It is unclear exactly who was aware of He's work before this week, with both local ethics bodies and He's former university claiming none of his research occurred with their approval. The Chinese government also called for an immediate halt to all of He's work. Xu Nanping, the country's Vice Minister for Science and Technology ordered an investigation into the research suggesting it was potentially illegal.
"The genetically edited infant incident reported by media blatantly violated China's relevant laws and regulations," Xu said. "It has also violated the ethical bottom line that the academic community adheres to. It is shocking and unacceptable."
The events of the last week will undoubtedly reverberate for years to come, with scientists and governments being forced to grapple with issues that until now have remained abstract and philosophical. How we respond to the case of He Jiankui will define a great deal of research in the future.
FDA Commissioner Scott Gottlieb has criticized the scientific community for its "slow" and "tepid" response to He's "ill-considered and unethical" work. Gottlieb suggests governments must immediately act to crack down on these rogue scientists as it has become clear the community is unable to self-police itself.
Gottlieb is not alone in his calls of hitting the stop button on this kind of research, however, pioneering geneticist George Church has been one of the few scientists to come out in He's defense. Church describes many responses to He's work as extreme, and akin to a "bullying situation."
"The most serious thing I've heard is that he didn't do the paperwork right," says Church in an interview with Science Insider. "He wouldn't be the first person who got the paperwork wrong. It's just that the stakes are higher."
Outside of fundamental moral concerns over genetic editing, all of the furore does boil down to questions of transparency. And it is of hiding much of his work prior to now that He seems most guilty. Calls for a more official moratorium on germline editing are rising, but as Church makes clear, "a moratorium is not a permanent ban forever." Instead, the best way forward may be to realize this technology exists, and is being used, so clear guidance and checklists for best practice must be established to make sure future work is done out in the open, for all to see and scrutinize.