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Since a Chinese scientist has shaken the world by claiming to have created twin girls with a modified gene, international outrage has only intensified.
"Everything that emerged in the last week does nothing but increase the worry of having been a deeply unfortunate and misleading mishap of the most dramatic type," says Francis Collins, US director at the National Institutes of Health. "At the time it was shocking, a week later it's still shocking."
While the researchers carefully examined the few details made public by the scientist, He Jiankui of the South University of Science and Technology in Shenzhen, China, it became clear that he really lacked the assembly of his genetic target.
He tried to make a change in a gene that would protect girls from HIV. But, at best, he may have protected only a twin from HIV, inadvertently making his genes seemingly superior to his sister. It is also possible that the genetic changes he has made may not have protected either.
Perhaps more worrisome, his attempt to use the powerful CRISPR gene modification tool has appeared to create unintended mutations in their DNA that could harm their health.
"I hope these two little girls are all right," says Collins. "No matter how unpleasant and inappropriate it may be, we all hope that there are no negative consequences for them: right now, it's hard to know."
It has become clearer. It has violated many of the rules on experimenting with people.
It's all clear. He made sure that the girls' parents really understood what he was doing to the embryos.
And he says about him participated in obtaining the consent to do the experiment from the parents themselves. That researcher's participation is considered off-limits in biomedical research. The Chinese scientist also suggested to parents that the study was testing a vaccine against AIDS.
"Everything we hoped would be paid attention in this situation seems to have been ignored, or trampled on," Collins says. "He was wrong anyway."
He claims to have also started at least one other pregnancy with a genetically modified child who was at a very early stage. It is not clear what happened to that pregnancy.
Although he may have kept his experiment secret from the Chinese authorities, it has become clear that he has been talking about his plans for a number of scientists in the United States for some time.
At least two scientists in California apparently knew what he was planning, including Mark DeWitt of the University of California, Berkeley.
Michael Deem, professor of physics and biochemical astronomy and genetic engineering at Rice University, was present when he recruited couples for his experiment. The University of Deem is investigating.
"If there were people who knew he was crossing this border and did not speak and did not bring the attention of the other authorities, this is deplorable," says NIH.
Matthew Porteus, a professor of pediatrics at Stanford University in Palo Alto, Calif., Said he had admitted his plan in February. He Jiankui had studied at Stanford. "At that point, I was really angry," says Porteus. "And I told him in unsafe terms about all the reasons he should not do it."
"I mistakenly thought that the person from the other side of the table would respect my very strong opinions about the imprudence of what he was proposing to do, and that would have been enough to stop him," says Porteus. "Obviously it was not."
Porteus says he now wishes to report it to the Chinese authorities and hopes to receive appropriate punishment.
One of Porteus' colleagues, William Hurlbut, claims to have appreciated the young scientist in a series of long conversations during the past year. But in October Hurlbut also became alarmed.
"I really warned not to do this sort of thing, and I'm sad that it happened like that, I think it's tragic," says Hurlbut. "I think he hurt himself, his career and I think he's in danger for human patients, and I think he's back in science."
And Hurlbut, who is a doctor and a bioetist, says it's not the only reason he's upset that he rushed forward.
"We are the first species, and this is the first moment, basically, when we are able to alter human genetics so that we can take root and perhaps drive the future of human evolution to a certain level," says Hurlbut. "This is a very significant moment not only in human history, but in the whole history of life".
Some scientists say about them I hope that the organizers of the second international summit on the editing of the human genome, held in Hong Kong, which coincided with his revelation at the end of November, have taken a more decisive stance.
The organizers of the summit condemned the creation of genetically modified embryos that have become children. But they rejected requests for a moratorium on genetically modified children. Instead, organizers have approved plans for how scientists could one day safely and responsibly create more genetically modified children to prevent terrible diseases.
"To suggest that it is only a matter of time before we decide to take this step for a truly meaningful public discussion," says Collins. "There is still some possibility – I think a significant possibility – that this debate leads to the conclusion that this is a line we should not cross".
The organizers of the summit defend their position.
"Our statement at the summit did not require that this technology be made available to people, but simply plotted a path towards responsible development of those jurisdictions that allow this to move forward," says R. Alta Charo, professor of law and bioethics at the University of Wisconsin, who helped organize the summit.
But it did not go far enough for some scientists.
"I would have been more reassured if they actually came out and said we would really need a moratorium on this, at least for a few years," says Paul Knoepfler, professor of cell biology and human anatomy at the University of California, Davis . "I was disappointed that they were not stronger."
Stanford bioethicist Hank Greely also called the conclusion of the summit a "tone-deaf message".
The World Health Organization is forming a task force to try to develop international rules on gene editing.
But many scientists argue that there may not be any way to prevent some other rogue scientist from coming anywhere from trying to make other genetically modified children soon.
Meanwhile, the Chinese authorities are trying to decide what should happen to the first scientist to claim to have created the first genetically modified humans. Although there was news that he had been detained, his university denied it.