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Since a Chinese scientist shook the world claiming to have created twins edited by a gene, international outrage has only intensified.
"All that has emerged over the past week only adds to the worry that this is an extremely unfortunate and misguided mishap of the most dramatic," said Francis Collins, director of the National Institutes of Health the United States. "It was shocking at the time, and a week later, it's still shocking."
While the researchers examined the meager details made public by scientist He Jiankui of the South Shenzhen University of Science and Technology, China, it became apparent that he had actually missed the first one. precise edition of its genetic target.
He tried to change a gene that would protect girls from HIV. But at best, he may have protected only one HIV twin, which would have inadvertently made his genes superior to his sister. It is also possible that the genetic modifications that he made may not have protected the twins.
Perhaps more worryingly, his attempt to use the powerful gene editing tool CRISPR appeared to create unintended mutations in their DNA that could harm their health.
"I hope these two little girls are fine," says Collins. "Even though it was unfortunate and inappropriate, we all hope that there will be no detrimental consequences for them.For the moment, it's hard to know."
It has become clearer that he has violated a lot of rules about experimenting on people.
It is far from clear. He ensured that the girls' parents really understood what he was doing to the embryos.
And he says that he participated in obtaining consent to do the experience of the parents himself. This participation of the researcher is considered prohibited in biomedical research. The Chinese scientist also suggested to parents that the study was testing a vaccine against AIDS.
"Everything one would have hoped would have been paid attention in this situation seems to have been ignored, or exceeded," Collins said. "It was wrong in every way."
He claims to have also started at least one other pregnancy with a baby modified by a gene that was at a very early stage. It is unclear what happened to this pregnancy.
Although he may have hidden his experience from the Chinese authorities, it became clear that he was talking about his plans to a number of scientists in the United States for some time.
Apparently, at least two Californian scientists knew what he was considering, including Mark DeWitt from the University of California at Berkeley.
Michael Deem, professor of physics of biochemical engineering and genetics and astronomy at Rice University, was apparently present when he recruited couples for his experience. The University of Deem studies.
"If some people knew that he was crossing this border and did not speak up and did not bring it to the attention of other authorities, it's unfortunate," NIH's Collins said. .
Matthew Porteus, a professor of pediatrics at Stanford University in Palo Alto, Calif., Said he had confessed to his plan in February. He Jiankui had studied at Stanford. "At that time, I really pissed off," says Porteus. "And told him in unclear terms all the reasons why he should not do that."
"I mistakenly assumed that the person on the other side of the table would respect my very strong opinions on the carelessness of what he was proposing to do. Stop, "says Porteus. "Obviously this was not the case."
Porteus says he would now like to have denounced He to the Chinese authorities and hopes that he will be punished appropriately.
William Hurlbut, one of Porteus' colleagues, said that he had come to love the young scientist during a series of long conversations during the past year. But in October, Hurlbut also alarmed.
"I really urged him not to do these kinds of things and I'm sad that this has happened so I think it's tragic," Hurlbut said. "I think he's hurt himself, his career, and I think he's endangering human patients, and I think he's delayed science."
And Hurlbut, who is a doctor and bioethics, says that's not the only reason why he's dismayed by the fact that he's rushed.
"We are the first species, and it's the first moment, basically, when we are able to alter human genetics so that we can root and perhaps guide the future of evolution. at a certain level, "said Hurlbut. "It's a very important moment not only in human history, but in the entire story of life."
Some scientists say that they I hope that the organizers of the second International Summit on the Review of the Human Genome held in Hong Kong, which coincided with He's disclosure in late November, have taken a firmer stance.
Summit organizers condemned the creation of gene-modified embryos that have become babies. But they rejected calls for a moratorium on genetically modified babies. Instead, the organizers endorsed the planning of how scientists might one day create more responsibly gene-edited babies to prevent terrible diseases.
"To suggest that it is only a matter of time before we decide to proceed in this way goes beyond a really important public debate," Collins said. "There is still a possibility – I think an important possibility – that this debate leads to the predictable conclusion that it is a line that we should not cross."
The organizers of the summit defend their position.
"Our summit declaration did not require this technology to be made available to the public, it simply laid out a path to responsible development for the jurisdictions that allow it to go forward," he said. said R. Alta Charo, a professor of law and bioethics at the University of Wisconsin, who helped organize the summit.
But that does not go far enough for some scientists.
"I would have been more reassured if they had really said that we really needed a moratorium, at least for a few years," says Paul Knoepfler, professor of cell biology and anatomy Human at the University of California, Davis. "I was disappointed that they were not stronger."
Stanford Bioethicist Hank Greely also described the summit's conclusion as a "silent message".
The World Health Organization is establishing a working group to develop international rules for gene editing.
But many scientists argue that there may be no way to prevent some other dishonest scientist, somewhere, from trying to create more genetically modified babies too early.
Meanwhile, the Chinese authorities are trying to decide what should happen to the first scientist who claimed to have created the first humans in the world to be edited by a gene. According to reports, he was arrested, but his university denied him.
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