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In the past 24 hours, a history of imports likely to change the world has surfaced. First reported by the MIT Technology Review and shortly thereafter by the Associated Press, which seems to have remained in the story for a while, the news that a Chinese scientist, He Jiankui , conducted an unprecedented experiment of modifying human embryos and seeing them brought to term shook the genetics community. Here's what you need to know about this evolving story.
Science
Besides him, the most important actors in this story may be twin babies named Nana and Lulu. As far as we know, the twins were published as embryos using CRISPR-cas9, a gene editing tool. The stated purpose of the audit was to disable CCR5, a gene involved in HIV cell invasion, which is how a virus infects a host.
The twins do not appear in a promotional video uploaded to Youtube by The He Lab, but the scientist himself. "When Lulu and Nana were more than a single cell, this operation removed the door through which HIV enters to infect people," he says.
In the video, he explains that his team performed a complete sequencing of the gene to determine if the procedure was successful. "The results indicated that the operation had operated safely, as expected," he said, but that's not true, according to a scientist who saw a preliminary version of the results and from He's research documentation.
"It's abominable," says Kiran Musunuru, a researcher at Penn State University. Musunuru says he saw a draft of the document prepared by He's team. Musunuru says the document he's seen shows two major problems with the published embryos: mosaicism and untargeted mutations.
Circumstances
There is a reason why the international genetics community has put in place ethics policies that prevent this type of research from being done in secret. In the United States, it is illegal to even try the type of gene editing that it has used on a human embryo.
"I do not want to say that I am categorically against [gene editing on embryos] never been done, "says Musunuru. But in this case, in secret and unattended, he says it's totally unacceptable. The biggest problem, in his eyes, is perhaps the fact that both embryos showed signs of mosaicism and non-targeted mutations. Mosaicism occurs when certain cells of an organism have a mutation, like the one that he was trying to create but not others. Out-of-target mutations look exactly like what they look like: genetic modifications that are not those predicted by genetic editing, that could introduce congenital diseases or other unintended consequences.
If the circumstances were different and Musunuru saw in his own laboratory embryos whose composition was that of the team for which he was responsible, would they be allowed to finish? "Absolutely not," says Musunuru. It is too possible that these unintended genetic changes cause completely unexpected health problems in infants, or even in their future offspring. When he saw the promotional video, "I shouted and cried in turn," says Musunuru.
Who knew?
"When this news was announced, I was shocked, but I was not totally surprised," said Yangyang Cheng, a postdoctoral researcher at Cornell University. In addition to her work as a particle physicist, Cheng, who grew up in China and studied there until she was a graduate student, became a voice in the culture of scientific research in China.
Although some people on Twitter have speculated that all this was wrong, Cheng says that she has no reason to doubt that the experiment took place and that the children are real. Earlier this year, she wrote for Foreign police that in China, "the standards of research on the latest technological frontiers are defined by a government that has always given priority to power over ethics." This means that the climate of biomedical research minimizes the role of ethics and does not have the necessary mechanisms to enforce ethical standards, she wrote, in addition to being shaped by "widespread corruption" .
"I am not a scientific ethicist but I have great concerns about genetically modified babies," Leta Hong Fincher tweeted, author of 2018 Betrayal Big Brother: The feminist awakening in China. She pointed out that "China has a long history of using eugenics in population planning".
The even debatable advances in gene editing could be seen on one level as a way to help the Chinese totalitarian government to shape and control its population, but also as a way to strengthen China's reputation. "There is a sense of science as a tool of national greatness," Cheng said. This decision "is quite a product of Chinese policy," she said – although there is no evidence that the government, or even any research institution, necessarily knew this. was happening before the announcement of He. Musunuru says he has a hard time believing that nobody knew it, but it's a question the audience will probably never get the answer.
And now?
He and his collaborators "have basically become thugs," says Musunuru. The institution denies having knowledge of his research and has suspended it without treatment, but reactions at the national level have been a little more ambivalent, said Musunuru. Stat reports that the Chinese Academy of Sciences has unexpectedly and discreetly withdrawn sponsorship of a major conference on human genome editing to be held in mainland China. This decision, which was not reported at the time, may be related to the controversial relationship between the country and bioethics.
Hong Kong intervened to host the conference after the move, reports Stat. It will begin this Tuesday, November 27 in a few hours at the local time, and in a completely different world, which had gone from the discussion on the possible futures to "agree, now it has happened" said Musunuru. "It's the kind of situation where you'd have to be transparent right from the start," he says. In the absence of this transparency, he said, it should not have been attempted at all.
He was about to present himself at the conference where, according to Musunuru, the Chinese scientist was planning to unveil to the world his unethical experience. Now that the cat is out of the bag, it's under investigation, as reported by the Tech Review earlier today.
Whatever happens to him and his collaborators, their field will have to count on what they did long after the closing of the conference. He and his team seem to have violated international conceptions of ethics and research standards in a way that unparalleled humanity itself. Among these standards, there is something that has not been much discussed yet, but one that will probably be dissected in the coming days: the standard of informed consent. One of the main concerns of Cheng and Musunuru is whether informed consent – something he claims in the laboratory – obtained from the parents of both girls before modifying their embryos – is even possible at this stage of the understanding of scientists of gene editing and climate research in China.
No one knows yet what will happen to Nana and Lulu, who, he says, only have a few weeks. Whatever their life, they have not made that decision themselves and the international community must wish them only the best.
"Let's call it the way it is," says Munuru: "experimenting on humans".
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