Five years ago, scientist He Jiankui shocked his peers and the world with claims that he created the first genetically edited babies. Now, after serving three years in a Chinese prison for practicing medicine without a license, he faces obstacles and critics as he tries to re-enter science.
Chinese scientist He Jiankui arrives to speak at a brief press conference on Feb. 21 in Beijing.
For months he’s been touting plans to develop affordable gene therapies for rare diseases, starting with the muscle-wasting condition Duchenne muscular dystrophy. He announced on social media last fall that he had opened a lab in Beijing. He spoke remotely about this new endeavor at an event in early February hosted by the University of Kent in the United Kingdom.
And last week, he announced to the press that he’d received a Hong Kong visa and might want to work in the financial hub. But Hong Kong officials revoked that visa hours later, saying false statements were made and a criminal investigation would be launched.
The Associated Press reached out to He several times by phone and email, but he has not agreed to an interview. He said on Twitter over the weekend that he will pause posting there to focus on his research. Others in the scientific world, meanwhile, are divided about his efforts at a comeback — with some expressing serious doubts.
“We have to be clear: He has no expertise in gene editing” and his previous experiment was “a total, total disaster,” said Kiran Musunuru, a University of Pennsylvania gene editing expert who wrote a book on the case. "I understand maybe some of this is a play to rehabilitate his reputation ... But how can anyone think this is a good idea?”
Some scientists worry he may return to the sort of work he did before, which involved using a tool called CRISPR-Cas9 to genetically edit embryos, disabling a gene that allows HIV to enter cells. The idea was to try to make the children resistant to AIDS.
The gene editing tool is a powerful one that may lead to treatments for many diseases. The scientists who discovered it were awarded the Nobel Prize in 2020. But He's work was criticized across the globe because, by making edits to embryos, he was attempting changes that could be passed to future generations — potentially altering the course of human evolution. The work was also medically unnecessary and carried the risks of changing other genes.
It's unclear how the three children who grew from the embryos — twins known as Lulu and Nana and a third child known as Amy — are doing.
Given He's ambition,“I wouldn't be surprised that a few years down the line if the opportunity arises, that he would go back” to that sort of work, said Dr. Samira Kiani, a genetic engineer and researcher at the University of Pittsburgh who produced a documentary on He’s story called “Make People Better."
But Benjamin Hurlbut, an expert in bioethics and biomedicine at Arizona State University who is in touch with He off and on, said “there's absolutely no reason” to believe he will do anything similar, and that He has the know-how and connections to build respectable projects in biotech.
“He’s done his time and he’s trying to start over,” Hurlbut said.
Kent sociologist Joy Zhang, an organizer of the U.K. event where He spoke, said most participants were scientists and academics based in China, and many arrived with open minds about him and his latest project.
“It was really shocking how shameless he was boasting about his gene therapy when he had very little substance to show, either scientifically or ethically,” Zhang said. “He proved that he’s not a misunderstood genius. He’s just a very egotistic opportunist.”
During his 25-minute presentation, He spent most of the time explaining basic science, discussing his Duchenne research for less than two minutes, according to a scathing report published by event organizers. That included sharing his goal to raise 50 million Chinese yuan through charity (about $7.3 million) and start clinical trials by March 2025.
“We’ve exposed that there is little substance” behind He’s ambitious Duchenne gene therapy plans, the report said. “We were concerned that he might endanger another vulnerable population if his new venture remains unchecked.”
Organizers said they invited He because China hadn’t had an open discussion about CRISPR technology and ethics since his stunning announcement in 2018. They were disappointed He wouldn’t talk about his recent past. A day earlier, he had pulled out of a planned talk at Oxford University, saying on Twitter he wasn’t ready to do that.
Kiani said inviting He to speak at such events is a good idea because the scientific community can communicate what’s right and wrong – and hear about his plans. “It would be very naive of us to think that if we don’t engage him in any conversation, he will just go away,” she said.
From 2019: Here's what we know about the mystery surrounding China’s gene-edited babies
Here's what's known about the situation
UpdatedHe Jiankui has not been seen publicly since January, his work has not been published and nothing is known about the health of the babies.
"That's the story — it's all cloaked in secrecy, which is not productive for the advance of understanding," said Stanford bioethicist Dr. William Hurlbut.
He talked with Hurlbut many times before He revealed at a Hong Kong science conference that he had used a tool called CRISPR to alter a gene in embryos to try to help them resist infection with the AIDS virus. The work, which He discussed in exclusive interviews with The Associated Press, was denounced as medically unnecessary and unethical because of possible harm to other genes and because the DNA changes can pass to future generations.
FILE - In this Nov. 28, 2018, file photo, He Jiankui, a Chinese researcher, speaks during the Human Genome Editing Conference in Hong Kong. Chinese scientist He Jiankui shocked the world by claiming he had helped make the first gene-edited babies. One year later, mystery surrounds his fate as well as theirs. (AP Photo/Kin Cheung, File)
Since then, many people have called for regulations or a moratorium on similar work, but committees have bogged down over who should set standards and how to enforce them.
"Nothing has changed," said Dr. Kiran Musunuru, a University of Pennsylvania geneticist who just published a book about gene editing and the CRISPR babies case.
"I think we're farther from governing this" now than a year ago, said Hurlbut, who disapproves of what He did. However, so much effort has focused on demonizing He that it has distracted from how to move forward, he said.
Where is He Jiankui?
UpdatedHe was last seen in early January in Shenzhen, on the balcony of an apartment at his university, which fired him from its faculty after his work became known. Armed guards were in the hall, leading to speculation he was under house arrest.
A few weeks later, China's official news agency said an investigation had determined that He acted alone out of a desire for fame and would be punished for any violations of law.
Since then, AP's efforts to reach him have been unsuccessful. Ryan Ferrell, a media relations person He hired, declined to comment. Ferrell previously said He's wife had started paying him, which might mean that He is no longer in a position to do that himself.
Hurlbut, who had been in touch with He early this year, declined to say when he last heard from him.
In this Oct. 10, 2018, photo, scientist He Jiankui looks at a computer screen while working at a lab in Shenzhen in southern China's Guangdong province. (AP Photo/Mark Schiefelbein)
Where are the babies?
UpdatedThe Chinese investigation seemed to confirm the existence of twin girls whose DNA He said he altered. The report said the twins and people involved in a second pregnancy using a gene-edited embryo would be monitored by government health departments. Nothing has been revealed about the third baby, which should have been born from that second pregnancy in late summer.
Chinese officials have seized the remaining edited embryos and He's lab records.
"He caused unintended consequences in these twins," Musunuru said of the gene editing. "We don't know if it's harming the kids."
In this Oct. 9, 2018, photo, Zhou Xiaoqin installs a fine glass pipette into a sperm injection microscope in preparation for injecting embryos with Cas9 protein and PCSK9 sgRNA at a lab in Shenzhen in southern China's Guangdong province. (AP Photo/Mark Schiefelbein)
Who else was involved?
UpdatedRice University in Houston said it is still investigating the role of Michael Deem, whose name was on a paper He sent to a journal and who spoke with the AP about He’s work. Deem was He's adviser when He attended Rice years ago.
The AP and others have reported on additional scientists in the U.S. and China who knew or strongly suspected what He was doing.
"Many people knew, many people encouraged him. He did not do this in a corner," Hurlbut said.
FILE - In this Wednesday, Nov. 28, 2018 file photo, He Jiankui speaks during the Human Genome Editing Conference in Hong Kong. On Tuesday, April 17, 2019, Stanford University said they had cleared three faculty members of any wrongdoing in dealings with He who claims to have helped make the world's first gene-edited babies. (AP Photo/Kin Cheung, File)
The science
UpdatedScientists recently have found new ways to alter genes that may be safer than CRISPR. Gene editing also is being tested against diseases in children and adults, which is not controversial because those changes don't pass to future generations. Some scientists think gene editing will become more widely accepted if it's proved to work in those situations.
"It's moving forward slowly because it's being done responsibly," Musunuru said.
Public opnion
UpdatedA forum was held in Berkeley, California, last month to get public views on gene editing — everything from modifying mosquitoes and crops to altering embryos.
The National Academy of Sciences recently pulled a video it made after concern arose about how it portrayed the ethically dicey science and its possible use to make designer babies. The academy has been leading some efforts to set standards for gene editing, and it gets most of its funding from the government, although a private grant paid for the video, a spokeswoman said.
An AP/NORC poll last year found that most Americans say it would be OK to use gene-editing to protect babies against disease, but not to change DNA so children are born smarter, faster or taller.
In this Oct. 9, 2018, photo, Zhou Xiaoqin, left, and Qin Jinzhou, an embryologist who were part of the team working with scientist He Jiankui, view a time lapse image of embryos on a computer screen at a lab in Shenzhen in southern China's Guangdong province. (AP Photo/Mark Schiefelbein)
Regulation
UpdatedA moratorium is no longer strong enough, and regulation is needed, CRISPR pioneer Jennifer Doudna of the University of California, Berkeley recently wrote in a commentary in the journal Science.
She noted that the World Health Organization has asked regulators in all countries not to allow such experiments, and that a Russian scientist recently proposed one.
"The temptation to tinker” with the DNA of embryos, eggs or sperm “is not going away," she wrote.
FILE - In this Dec. 1, 2015, file photo, Jennifer Doudna, a University of California, Berkeley, co-inventor of the CRISPR gene-editing tool that He Jiankui used, speaks at the National Academy of Sciences international summit on the safety and ethics of human gene editing, in Washington. Six months after He was widely scorned for helping to make the world's first gene-edited babies, Doudna said that she has heard of others who want to edit embryos. (AP Photo/Susan Walsh, File)
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