Dr. He Jiankui, a (then) 34-year-old Chinese biophysicist, came to an Arizona science conference in early 2018 to see one of his heroes, Nobel Prize-winning geneticist James Watson, who initially postulated the double helix structure of DNA molecules in 1953.
Dr. He was in the midst of his own massive experiment, genetically altering embryos to reduce their susceptibility to disease. It was an endeavor that had never been done before (or since), and He had doubts.
Because the 90-year-old geneticist could not understand his accent, he wrote the question down and asked Watson, “Do you think that is a good thing to do?”
Watson’s response consisted of three simple words: “Make people better.”
“This gave me the confidence to be the one to ‘break the glass,’” Dr. He told filmmakers in a new documentary, Make People Better, which was released on iTunes, Amazon Prime, and other platforms on December 13. “This technology could be advantageous to society. Helping others is an objective. Thus, I did so.”
Dr. He utilized CRISPR technology to eliminate the HIV-transmitting gene. Although his work was admirable, it did not follow to many standard research protocols.
Whether he did truly “make people better” is up to debate. Earlier in the same year, Dr. recruited a couple in whom the male was HIV-positive. They permitted him to modify the DNA of their IVF twin embryos. Dr. Kiran Musunuru, a genetics researcher, reveals that he utilized CRISPR technology, which is similar to “scissors (used) to cut DNA,” to disable the CCR5 gene that facilitates HIV infection, rendering the twins essentially resistant to AIDS.
Lulu and Nana, the gene-edited infants, were born in November 2018 and became international headlines almost immediately. The director of Make People Better, Cody Sheehy, describes it as a “scientific breakthrough” that has the potential to “reshape the direction of human evolution. The stakes could not be higher for any of us.”
Dr. He performed his contentious tests at the Southern University of Science and Technology in Shenzhen.
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However, many members of the scientific world were shocked, and some have dubbed him “China’s Dr. Frankenstein.” In excess of 122 Chinese experts have issued a declaration condemning Dr. His acts are described as “crazy,” and his accusations are described as “a massive harm to the global reputation and progress of Chinese research.”
UCLA neuroscientist Alcino Silva told the Post that He’s experiment was “scientifically naive and morally repugnant.” The author of The CRISPR Generation: The Story of the World’s First Gene-Edited Babies, Musunuru, refers to it as a “scientific and ethical calamity. In addition, he violated literally each and every ethical guideline.”
Such as publishing the details of his lab work to a peer-reviewed scientific journal or providing conclusive evidence to fellow scientists that his results were accurate. He conducted the trials in secret, unbeknownst to the university where he was employed (and who funded his research), 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,” as reported by the state-run Beijing News. (They also disclosed that He has been on unpaid vacation from the university since February 2018).
A pair of fertilized eggs being tested genetically at a Chinese research facility.
Dr. At least initially, his objectives appeared noble. As he indicated in Make People Better, he believed that disease prevention was more important than disease treatment. He stated that with embryo gene editing, “one shot addresses the problem.” “I call it a genetic vaccination.”
Dr. He’s Work, according to “Make People Better” director Cody Sheehy, is a “scientific breakthrough” with the potential to “reshape the direction of human evolution.”
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When He visited a gene-editing conference at the University of Hong Kong in November 2018 to speak publicly about his study for the first time (and to date, only time), it became clear that his goals were not so straightforward. During a Q&A, Robin Lovell-Badge, a London-based biologist 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 to create enhanced abilities or features, such as stronger bones, increased intelligence, or even athletic ability).
Dr. He asserted that he had not and said that he was “opposed to genome editing for enhancement.”
The premature twins born as a result of Dr. He’s research had to spend time in incubators.
The question regarding upgrades was not unexpected. The removal of the CCR5 gene from mice greatly improved their memories, according to a 2016 study.
Alcino Silva, a neuroscientist from UCLA who led the study, told the Post, “It might potentially influence certain components of human memory.” “The issue is that we do not know enough to take the enormous step of changing genes in healthy humans. It is unwise and immoral to continue doing this at this time.”
Some experts, such as John Zhang, the founder of the New Hope Fertility Center in New York City, wish to advance genome editing even farther. As he told MIT Technology Review in 2017, the goal is to produce “designer babies” by allowing parents to choose the hair and eye color of their future children and even increase their IQ. Zhang guaranteed, “You can truly do whatever you want.”
Ethan Hawke in a scene from the 1997 film “Gattaca,” which depicts genetically modified and enhanced humanity.
Zhang once met with Dr. He in August of 2018 in New York, ostensibly to explore launching a clinic in China. Zhang distanced himself from his colleague amid the uproar surrounding He’s gene-editing experiment, telling Science magazine in 2019 that he barely knew He.
“I know him exactly like many others do, through an academic gathering,” he remarked.
In “Make People Better,” Harvard geneticist George Church (center) is seen in a scene.
As Harvard scientist George Church writes in Make People Better, he may be the sacrificial lamb for gene editing, but his beliefs are not inherently radical. Consider the 1997 science fiction film Gattaca, which depicts a future world in which children are conceived by genetic engineering and selected for desirable inherited features such as high IQ and long life span. The purpose of the film was to show a gloomy future. However, Antonio Regalado, a journalist for the MIT Technology Review, informed the filmmakers from Make People Better that he has met other experts “who have the opposing view. I know a scientist who attempts to determine the IQ of embryos, and he was inspired by Gattaca. For this person and possibly many, that is paradise, not dystopia.”
Dr. Ben Hurlbut, a bioethicist at Arizona State University, states in his book Make People Better that he witnessed multiple discussions with Dr. He and other notable scientists who did not see an issue with using humans as test subjects.
We simply do not know enough to take the enormous step of changing genes in healthy humans.
UCLA neuroscientist Alcino Silva
Hurlbut recalls that one of the most senior individuals in the room remarked that genome editing may not operate flawlessly at first and will require debugging. “The notion that the experiment justifies the creation of individuals in order to figure it out is, to my mind, a sense of incredulity. Nonetheless, it circulates as a legitimate sensibility.”
The scientific community, including the Shenzhen Harmonicare Women’s and Children’s Hospital in Shenzhen, China, whose ethics board purportedly gave Dr. He the go-ahead, turned their backs on Dr. He despite their initial support.
According to Chinese state media, in December 2019 Dr. He was convicted of “illegal medical practice” for his gene editing research, sentenced to three years in prison, and fined three million yuan (about $470,000).
The twins at the core of Dr. He’s research are no longer infants and may have future health concerns.
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Before being detained by authorities, He remained unrepentant during his final interview with the filmmakers, which was interrupted by an ominous knock on his front door (recorded on tape). “It would be inhuman not to help these people protect their children if we can,” he said.
He continued, “ethics is on our side of history.”
Sheehy continued to believe that Dr. He is right. The director connects opposition to designer infants to initial skepticism regarding in vitro fertilization. “At the time, the concept was referred to as ‘test tube babies,’” he recalls. Today, it is possible that we all know someone who was conceived through in vitro fertilization, and the procedure’s creators have been awarded the Nobel Prize.
The public sentiment already favors gene editing. 72% of Americans support modifying a baby’s DNA to treat a sickness or other medical issue, but 80% oppose using the same technology to increase a child’s IQ, according to a Pew Research poll.
Lulu and Nana, the subjects of Dr. He’s HIV-resistant gene-editing experiment, are now toddlers and (for the time being) in excellent health. But their future is uncertain. “It is unclear what health implications they will face throughout their lives,” says Musunuru. Time alone will tell.
Dr. He is currently working from a new laboratory in Beijing, where he expects to find a cure for Duchenne muscular dystrophy, despite losing his research post and landing in jail.
AP
Dr. He got freed from prison in April at the age of 38 and is already making a return. (He has not replied to interview requests.) In the past month, he has posted images of himself in his new lab in Beijing on Twitter and claimed to find a treatment for Duchenne muscular dystrophy (but only if he receives a public donation of one billion).
“It appears that people are genuinely encouraging him to give speeches and participate in conversations about his experiment, which I find abhorrent,” Musunuru says. “To me, this is analogous to inviting Nazi doctors convicted of war crimes during World War II to reopen their practices and engage freely in the scientific community. He Jiankui should have received a significantly heavier sentence, probably life in prison, and been forbidden from ever entering a laboratory again.”
Sheehy is slightly more empathetic and even hopeful about the future. “We will hear much more about him in the coming months,” he says of Dr. He, which, if accurate, bodes well for his documentary. “It is obvious to me and others who are close to him that he learnt very little from the results of the initial tests, and history will indeed demonstrate that ethics are on his side.”
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