In early 2018, Dr. He Jiankui, a then-34-year-old Chinese biophysicist, traveled to an Arizona science conference to meet with one of his heroes, the Nobel Prize-winning geneticist James Watson, a man who first proposed the double helix structure of DNA molecules back in 1953.
Dr. He was in the midst of a big experiment of his own, genetically engineering embryos to eliminate their risk from disease. It was something that hadn’t been attempted before (or since), and He was having reservations.
“Do you think that that’s a good thing to do?” he asked Watson, writing down the question because the 90-year-old geneticist couldn’t understand his accent.
Watson responded with just three words: “Make people better.”
“That gave me the courage to be the person to ‘break (the) glass,’” Dr. He told filmmakers in a new documentary, Make People Better, out December 13th on iTunes, Prime, and elsewhere. “This technology, it could benefit society. It’s an end goal, to help people. So, I did that.”
Whether he did indeed “make people better” is open to debate. Earlier that same year, Dr. He recruited a couple where the man was infected with HIV. They allowed him to edit the DNA of their twin IVF embryos. He did it with CRISPR technology—which is like “scissors (used) to make cuts in DNA,” explains Dr. Kiran Musunuru, a genetics researcher—disabling the CCR5 gene that enables the HIV infection, thus making the twins virtually immune to AIDS.
Lulu and Nana, the gene-edited babies, were born in November of 2018, and immediately became international news. Cody Sheehy, Make People Better’s director, calls it a “scientific breakthrough” with the power to “reshape the course of human evolution. The stakes for all of us couldn’t be higher.”
But many within the scientific community were horrified, with some dubbing him “China’s Dr Frankenstein.” Over 122 Chinese scientists released a statement calling Dr. He’s actions “crazy” and his claims “a huge blow to the global reputation and development of Chinese science.”
Alcino Silva, a neuroscientist at UCLA, told the Post that He’s experiment was “scientifically foolish and morally reprehensive.” Musunuru, author of The CRISPR Generation: The Story of the World’s First Gene-Edited Babies, calls it a “scientific and ethical disaster. He also violated literally every ethical principle in the rulebook.”
Principles like submitting the details of his lab work to a scientific journal, where it could be peer reviewed, or sharing conclusive evidence with fellow scientists that his results were even accurate. Instead, He conducted the trials in secret, unknown to the university where he was employed (and who funded him with research money), the Southern University of Science and Technology in the Chinese city of Shenzhen, who quickly denounced Dr. He’s research, calling it “a serious violation of academic ethics and academic norms,” according to the state-run Beijing News. (They also revealed that He had been on a “no-paid leave” from the university since February of 2018.)
Dr. He’s intentions, at least in the beginning, seemed noble. As he explained in Make People Better, he believed that “preventing disease (is) even more important than treating the disease.” With embryo gene editing, “one shot solves the problem,” he said. “I call it a genetic vaccine.”
But when He visited a gene-editing summit at the University of Hong Kong, in November of 2018, to talk publicly about his research for the first (and so far only) time, it became apparent that his intentions weren’t so simple. During a Q&A, Robin Lovell-Badge, a biologist from London and one of the summit’s organizers, asked Dr. He if he could have “inadvertently caused an enhancement” (the slippery ethical slope for gene editing when it’s used not just to fix or prevent health issues but create enhanced abilities or features, like stronger bones, improved intelligence, or even athletic ability.)
Dr. He insisted he hadn’t, and added that he was “against using genome editing for enhancement.”
The question of enhancements wasn’t out of left field. A 2016 study found that removing the CCR5 gene from mice significantly improved their memories.
“It could potentially affect certain aspects of memory in humans,” Alcino Silva, a neuroscientist at UCLA who led the study, told the Post. “The problem is that we simply do not know enough to take the huge step of modifying genes in healthy human beings. It is foolish and morally reprehensive to be doing this at this point.”
Not everyone agrees, and some scientists — like John Zhang, founder of a New York City clinic called New Hope Fertility Center — want to take gene editing even further. As he told MIT Technology Review in 2017, the goal is to create “designer babies,” letting parents select hair and eye color, and even improve their future child’s IQ. “You can really do anything you want,” Zhang promised.
Zhang once met with Dr. He in New York during August of 2018, purportedly to discuss opening a clinic together in China. But after the controversy surrounding He’s gene-editing experiment, Zhang distanced himself from his fellow researcher, telling Science magazine in 2019 that he barely knew He.
“I know him just like many people know him, in an academic meeting,” he said.
He may be the sacrificial lamb for gene editing—as Harvard geneticist George Church says in Make People Better, He was “willing to be the martyr that came first”—but his views aren’t necessarily fringe. Consider Gattaca, the 1997 sci-fi movie about a futuristic world in which children are conceived with genetic engineering, selected for favoriable hereditary traits like high IQ and long life-span. The movie was intended to depict a dystopian future. But Antonio Regalado, a journalist at the MIT Technology Review, told the Make People Better filmmakers that he’s encountered many scientists “who have the opposite take. I know a scientist who works in trying to score embryos for their IQ, and he was inspried by Gattaca. For this person and maybe more people, that’s not dystopia, that’s utopia.”
Dr. Ben Hurlbut, a bioethicist at Arizona State University, claims in Make People Better that he witnessed several meetings with Dr. He and other prominent scientists who didn’t see the problem with human guinea pigs.
The problem is that we simply do not know enough to take the huge step of modifying genes in healthy human beings
UCLA neuroscientist Alcino Silva
“One of the very senior people in the room [made] a comment about how genome editing may not work perfectly at first and it’s going to require some be-bugging,” Hurlbut remembers. “The idea that the experiment justifies creating people in order to work it out is, to me, an unbelievable sensibility. And yet, it’s floating around as a reasonable sensibility.”
Despite the encouragement early in He’s research, the scientific community—including the Shenzhen Harmonicare Women’s and Children’s Hospital in Shenzhen, China, whose ethics board allegedly gave Dr. He the green light—turned their backs on him.
In December of 2019, Dr. He was convicted of “illegal medical practice” for his gene editing experiments, according to Chinese state media, and sentenced to three years in prison and fined three million yuan (around $427,000).
Before being apprehended by authorities, He — who gave his last interview with the filmmakers before being interrupted by an ominous knock on his front door (captured on camera) — remained unrepentant. “If we can help these families protect their children, it’s inhuman for us not to,” he said.
Ethics, he added, “is on our side of history.”
Sheehy still believed that Dr. He is correct. The director compares aversion to designer babies to initial reluctance about in vitro fertilization. “Back then, the idea was labeled ‘test tube babies,’” he says. “Today, it is likely that we all know someone who was born through the IVF procedure, and the inventors have received a Nobel prize.”
Public opinion is already leaning towards gene editing. A Pew Research poll found that 72% of Americans approve of changing a baby’s genes to treat a disease or other medical condition, but 80% are opposed if the same technology is used to boost a child’s IQ.
The subject of Dr. He’s HIV-resistant gene editing experiment, Lulu and Nana, are now toddlers, and both are still alive and (at the moment) perfectly healthy. But their future remains uncertain. “It’s not clear what health consequences will be suffered by them during their lifetimes,” says Musunuru. Only time will tell.
Dr. He, now 38, was released from prison in April, and is already staging a comeback. (He has not responded to requests for an interview.) In the past month, he’s posted photos on Twitter of himself at his new lab in Beijing, and promised that he intends to cure Duchenne muscular dystrophy (but only if he receives a public donation of one billion).
“It appears that various folks are actually inviting him to give talks and participate in discussions about his experiment, which I find utterly appalling,” says Musunuru. “To me, that’s like inviting the Nazi doctors who were convicted of war crimes during World War II to set up shop again and participate fully in the scientific community. He Jiankui should have had a much harsher sentence, perhaps prison for life, and been banned from stepping anywhere near a laboratory again.”
Sheehy is slightly more sympathetic, and even optimistic about what lies ahead. “We have not heard the last of him and will hear much more in the coming months,” he says of Dr. He— which, if true, bodes well for his documentary. “It is clear to me and others close to him that he learned very little from the outcome of the first experiments and that history will indeed show that ethics is on his side.”