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World Chinese scientist provokes furor with claim of world’s first genetically edited babies

In this Oct. 10, 2018 photo, He Jiankui speaks during an interview at a laboratory in Shenzhen.

Mark Schiefelbein/The Associated Press

A Chinese researcher has provoked furor and calls for new laws on genetic experimentation in his own country after claiming to have helped produce the world’s first genetically edited babies.

The claim, if true, would mark a major technological milestone: the birth of twins with a genetic code manipulated to make them less vulnerable to HIV. It’s a step with far-reaching implications, promising both the utopian eradication of heritable disease and the dystopian fashioning of human beings designed with innate biological advantages.

China has been at the forefront of such genetic advancement, with vast funds devoted to cutting-edge research and a less rigid legal environment than other countries including Canada, which has banned the alteration of inheritable genomes.

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Even so, China’s scientific community was stunned by the announcement that babies with edited genetics have already been born, with one prominent researcher calling it “reckless” and others calling for new rules.

On Monday, 122 scientists – some from China’s most prestigious research institutions, including Peking University and the Chinese Academy of Sciences – signed a petition of condemnation. “Direct human experimentation can only be described as ‘madness,’” the petition says. It calls the genetically edited babies “a huge blow to the global reputation and development of Chinese science and biomedical research,” and demands strict and speedy supervision by authorities.

“Pandora’s Box has been opened, but we may have a chance to close it before it’s too late,” the petition says.

Indeed, it’s time for China to “pass a law on these types of studies,” said Huang Zhiwei, dean of the School of Life Science and Technology at Harbin Institute of Technology. If government fails to intervene, he warned, “you could imagine that our society will one day be fraught with people carrying engineered genes.”

The ferocious backlash came after He Jiankui, a researcher who runs a laboratory at the Southern University of Science and Technology in Shenzhen, revealed at a conference and to the Associated Press that he had used technology called CRISPR-cas9 to edit embryos for seven couples. The male member of each couple had HIV, and in some of their embryos Dr. He disabled a gene, CCR5, that is a key pathway for the transmission of HIV.

Earlier this month, one of those couples gave birth to twins, though the outcome was not the same for the two children. In one, both genes include the alteration, which is expected to give that child protection against contracting HIV. In the other twin, only one gene carried the alteration, AP reported Monday. That child is therefore still considered vulnerable to HIV.

Dr. He’s research has not been published in a peer-reviewed paper, and he has declined to provide any identifying details on the babies – save their names, Lulu and Nana – or immediately respond to inquiries from other researchers. According to AP, Dr. He conducted his research with the approval of Shenzhen Harmonicare Women’s and Children’s Hospital, and Lin Zhitong, a hospital administrator who heads the ethics panel, told the news agency: “We think this is ethical.” The institution, however, was not one of the four hospitals Dr. He said had provided the embryos for his research. On Monday, a Harmonicare official, who refused to provide her name, told The Globe and Mail the research remains under investigation.

In a statement, the Southern University of Science and Technology said Dr. He has been on leave from the school since February, his research was done without the university’s knowledge and his work “seriously violates academic ethics and academic norms.”

Gene-editing technology is already being used on plants and animals, and scientists said what Dr. He described is not considered an enormous technical challenge.

It does, however, directly confront ethical boundaries erected to ensure genetic research is not responsible for unanticipated harm.

Dr. He himself sought to address the implications of his work. In a series of videos posted to YouTube Sunday, the Stanford-educated researcher said the gene-editing was in line with societal expectations and designed solely to treat a serious disease. He published a set of ethical guidelines meant to govern the practice.

“The first principle is mercy for families in need,” he said, in English. “We believe a gene defect should not take away children’s life. And a gene defect should not prevent a loving couple to start their family.”

What he calls “genetic surgery” should only be used “for serious disease, never vanity,” he said, and there should be no “increasing IQ, improving sports performance or changing skin colour.” It should also be available to people regardless of economic stature, he said calling it a tool to lessen inequality.

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But the notion that genetically edited children are already alive in China should prompt ”horror,” said Dianne Nicol, director of the Centre for Law and Genetics at the University of Tasmania.

“It seems to be so premature, in the sense that the basic science, as far as I can see it, is not at the stage yet where you could contemplate actually bringing a live baby into the world,” she said. “We’re not at the stage yet where we know what we’re doing is 100 per cent sure of achieving the results that we want.”

Dr. He’s assurances aside, Prof. Nicol added, “one of the ethical concerns is the floodgates argument, that if we allow genome editing for serious diseases – does that mean we can do it for intelligence or sports ability?”

What Dr. He claims to have done stands in contrast to what he himself wrote in a science blog in February, 2017. “The human behaviour of any person who performs germ cell editing or gene editing is extremely irresponsible, both in terms of science and social ethics,” he wrote, if it does not first address a series of safety issues, including multi-generational animal testing “to explore whether the descendants of genome editing are healthy and normal.”

The Shenzhen researcher now offers a different explanation. Some parents “carry lethal genetic diseases, often a small mistake in a single gene out of 20,000,” he said in a YouTube video. “If we can help these families protect their children, it’s inhuman for us not to.” Ethical considerations should defer to the needs of parents, he told AP: They “are as much authorities on what is correct and what is wrong because it’s their life on the line.”

Still, scientists questioned Dr. He’s reasoning, including his choice of the CCR5 gene for alteration. Current technology already allows scientists to prevent the transmission of HIV to newborns, said Fan Yong, a leading researcher at Guangzhou Medical University who was part of a team that in 2016 produced a paper that was the second published academic claim of genetic editing in human embryos.

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That research was also focused on achieving AIDS-resistant embryos, although Prof. Fan at the time said further work should be halted “until after a rigorous and thorough evaluation and discussion are undertaken by the global research and ethics communities.”

On Monday, he expressed concern over Dr. He’s claims, saying “nobody knows what kind of consequences will befall those infants.”

It’s possible that this kind of procedure may be considered acceptable in a decade or two, he said. But “what I am certain of is that it’s not something we should do today,” he said, adding: “Testing on newborn babies is too fast. It’s just reckless.“

With reporting by Alexandra Li

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