Dr. He Jiankui, left, works at a laboratory in Shenzhen, China in 2018. Dr. He was sentenced to three years in prison for carrying out 'illegal medical practices' after using gene-editing techniques to change the DNA of two babies while they were in the womb, theoretically making them immune to HIV.Mark Schiefelbein/The Associated Press
In 2018, He Jiankui was briefly the most famous scientist in the world. The self-described “CRISPR pioneer” used the breakthrough gene-editing technique to alter the DNA of two babies while they were in the womb, theoretically making them immune to HIV.
Dr. He said he was inspired to create the world’s first genetically altered humans after visiting a village in central China devastated by AIDS, the result of a blood-for-cash scheme that left as much as 60 per cent of the local population infected with HIV at a time when this was still a death sentence for many patients.
“I wanted to do something to help,” Dr. He said in an interview. “I thought that if children could be made resistant to HIV, that’s like a vaccine for a lifetime. I didn’t think too much about it.”
Dr. He’s work provoked a global storm of condemnation. His colleagues in China and the United States distanced themselves from him, and more than 120 prominent Chinese scientists signed a letter denouncing Dr. He’s “madness” and accusing him of bringing the country’s scientific establishment into disrepute.
In December, 2019, Dr. He was sentenced to three years in prison for carrying out “illegal medical practices.” His career as a scientist appeared to be over not long after it had begun.
Less than two years after his release, however, Dr. He has a new lab up and running on the Chinese tropical island of Sanya, funded by unidentified donors in China and the U.S. He is keen to start collaborating again with scientists around the world.
Dr. He said he had been “naive” about the potential reaction to his work, but still believes passionately that gene-editing “could benefit billions.” He compared himself to Edward Jenner, often called the “father of immunology.”
“When he originally invented the vaccine for smallpox, it was not welcomed,” Dr. He said. “People were worried about this new technology.” (While Mr. Jenner’s initial discoveries in the late 1790s were greeted with some skepticism, vaccination was adopted rapidly in the years after, and in 1802 the British Parliament awarded Mr. Jenner £10,000 for his work, equivalent to about $1.4-million today.)
Dr. He said his current work focuses on Duchenne muscular dystrophy and Alzheimer’s disease, but “there will be no more gene-edited babies,” with all research confined to animal and non-viable human embryos.
The lab’s Alzheimer’s study focuses on a specific gene mutation found in some northern Europeans that seems to protect them against developing dementia later in life.
“We want more people to have this in future,” Dr. He said, adding his team needs to overcome the challenge of recreating this mutation using the more modern CRISPR base-editing technique, which can rewrite DNA without damaging it, before it can begin animal trials.
Dr. He’s dream remains a “genetic vaccine” that could modify perhaps as many as 30 genes in the womb to create a baby immune to most major diseases.
“When my two daughters were born, within 24 hours they got their first vaccine, for HPV,” Dr. He said. “Maybe in future, babies will receive vaccines even prior to birth.”
Such a dream is a long way off, he admitted. Dr. He remains a controversial figure, with critics accusing him of exaggerating the import of his work and being more focused on fame and money than scientific advancement. During the reporting of this story, Dr. He said he was attacked by a man outside his lab in Sanya, who beat him severely before being pulled off by a security guard.
Dr. He posted a photo of his bloodied shirt to social media, adding “I know that many colleagues are jealous of my achievement of gene editing, however, I, Jiankui He, will never give up.” (An officer at the Yazhou Bay Science and Technology City police station said a suspect had been arrested, but would not provide any more information.)
Despite all his difficulties, and the intense criticism he has faced since 2018, Dr. He said he did not view himself as outside the scientific mainstream, claiming many colleagues were quietly supportive even at the height of the controversy. Later reporting showed that several colleagues had been encouraging.
“Some people criticize me in public but when I meet them in private, they always respect me,” Dr. He said.
While many countries already had limits in place, in the wake of the 2018 scandal, the World Health Organization said “it would be irresponsible at this time for anyone to proceed with clinical applications of human germline genome editing,” referring to germ cells that can be passed on to offspring through the reproductive process.
Zhai Xiaomei, a bioethics expert at the Chinese Academy of Medical Sciences, said changes because of gene editing could potentially be transmitted to future generations with unpredictable risks as a result of germ cell editing.
Dr. Zhai said the potential dangers of gene editing “must be balanced against the severity of the patient’s condition,” adding that Dr. He’s original research was “medically unnecessary” as other means existed of preventing mother-to-child transmission of HIV.
“Human genetic diseases are a common enemy of humanity, and we must eliminate and overcome them,” Dr. Zhai said. The current restrictions are in place “not because the technology should not be pursued, but because it is immature and may harm humanity.”
For his part, Dr. He said it was time to restart the conversation on human gene editing.
“People should be discussing this in public, whether you agree with it or disagree, but let people find out what is truly good for society and what we should prohibit in future,” he said. “I’m certainly sure my own case helped encourage the public debate on this issue.”
With a report from Alexandra Li in Beijing