Chinese scientist He Jiankui, who vanished from public view soon after announcing he had edited the genes of three human babies in 2018 and 2019, gave an interview to South China Morning Post (SCMP) on Friday.
He said he hoped the children he experimented on would not be troubled with too many demands for scientific analysis.
“They have a normal, peaceful and undisturbed life. This is their wish and we should respect them,” said He.
The scientist said he had paternal feelings toward the three girls he genetically modified, a pair of twins called Lula and Nana born in 2018, followed by Amy in 2019.
“You will have high expectations of them, but you also have huge unease,” He said.
He caused an uproar in November 2018 when his team at the Southern University of Science and Technology in Shenzhen, China, announced the first successful modification of babies’ DNA using the CRISPR gene editing system. He was extremely proud of his achievement, anticipating his techniques could create babies that are highly resistant to numerous diseases and genetic maladies. His first two subjects, Lulu and Nana, were genetically modified to resist the HIV virus, which was carried by their father.
He seemed somewhat taken aback by the reaction from the international scientific community, which denounced his experiments as unethical. Skeptical scientists questioned the methodology and conclusions of his work.
The Chinese government quickly accused He of unspecified crimes, excoriated him for getting around government oversight by securing private funding for his work, and made him disappear. By December 2018, he was either under house arrest or running a bed-and-breakfast for Chinese security agents, as dozens of them could be seen swarming around his residence.
He was thrown in prison until April 2022 for illegal medical practices and fined $430,000. This was considered a relatively light sentence by close observers of the Chinese Communist Party, who noted he could easily have been charged with corruption and sent to prison for life, or even executed.
He resurfaced in December 2022 with an announcement that he had been invited to speak at Oxford University about using gene-editing technology for reproductive medicine. According to the SCMP, his Oxford address will be delivered next month.
He said he intends to continue his research, confirming reports that he has established a laboratory in Beijing to develop therapies for genetic diseases. He told the SCMP he plans to create a non-profit called the Beijing Institute for Rare Disease Research to pursue his “long-term vision,” which is that “each of us should be free from inherited diseases,” and intends to write an article for the international scientific community about his experiences.
“The question is too complex and I do not yet have an answer,” He replied when the SCMP asked if he should have done things differently.
The Chinese scientific community is uncertain how to proceed with the three children from He’s experiments. He said the original plan was to purchase lifelong health insurance for the babies to cover their medical needs, but no insurer was willing to write a policy for them. He told the SCMP he wants to establish a charitable foundation that would handle their medical needs.
In June, other Chinese scientists suggested creating a center to both provide medical care to the children and study them. The children are evidently healthy at the moment, but scientists believe there is a strong chance they will suffer genetic abnormalities in the future.
https://www.theguardian.com/science/2023/feb/05/how-far-should-we-go-with-gene-editing-in-pursuit-of-the-perfect-human
The UK Guardian on Sunday expected He Jiankui to loom large over the Third International Summit on Human Genome Editing at the Francis Crick Institute in London next month, even though he is not an invited guest. He Jiankui revealed his experiments to the world at the Second International Summit on Human Genome Editing at the University of Hong Kong in 2018.
“We will be discussing what has happened to the three children whose physiology He may have altered by genome editing,” said summit organizer Prof. Robin Lovell-Badge.
“Genome editing has enormous power to benefit people, but we should be transparent about how it is being tried and tested before the technology is put into practice,” Lovell-Badge said, proposing applications that range from curing otherwise intractable diseases to genetically modifying astronauts to better endure interplanetary voyages.
“You could also contemplate altering humans so they could see in the infrared or the ultraviolet range, as some animals can do. Such enhancements would be ideal for troops fighting at night or in other hostile conditions,” the professor suggested.
As for He Jiankui, Lovell-Badge was not enthusiastic about his new lab in Beijing.
“He says he is going to focus on gene therapy to treat diseases such as muscular dystrophy. And that scares me because he is not a biologist. He knows little about the disease,” Lovell-Badge said.
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