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Gene-Edited Babies’ Claim Sparks New Questions About Safety : Shots



There has been a backlash since Chinese scientist He Jiankui claimed to have changed genes into twin embryos.

Anthony Wallace / AFP / Getty Images


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Anthony Wallace / AFP / Getty Images

There has been a backlash since Chinese scientist He Jiankui claimed to have modified genes in twin embryos.

Anthony Wallace / AFP / Getty Images

Since a Chinese scientist has shaken the world claiming to have created twin girls with genitals, international outrage has escalated only

"Everything that emerged in the last week does nothing but increase concern for this profound misfortune, misadventure of more dramatic type misadventures, "says Francis Collins, director of the National Institutes of Health of the United States. "It was shocking, a week later, it's still shocking."

While the researchers have carefully examined the few details made public by the scientist, He Jiankui of the Southern University of Science and Technology in Shenzhen, China, it is clear that it 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 troubling, his attempt to use the powerful CRISPR gene modification tool seemed to create unintentional mutations in their DNA that could damage their health [19659012] The Chinese scientist says he is the first to create genetically engineered children edited with CRISPR “/>

"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 became clearer that he violated many of the rules on experimenting with people.

It is not clear at all. He made sure that the girls' parents really understood what they were doing to the embryos.

And he says that participated in obtaining the consent to do the experiment from the parents in person. 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 you would have hoped would have been paid attention in this situation seems to have been ignored, or tread on it," says Collins. "He was wrong anyway."

He claims that he had 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 to 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 from 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 they were crossing this border and did not speak and did not bring it to the attention of other authorities, it is unfortunate," says NIH.

Matthew Porteus, professor of pediatrics at Stanford University in Palo Alto, Calif., Says he admitted his plan for him 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 it would be enough to stop him," says Porteus. "Obviously it was not."

Porteus says he now wishes to have reported him to the Chinese authorities, and he hopes that he will receive appropriate punishment.

One of Porteus's colleagues, William Hurlbut, says he liked the young scientist in a series of long conversations in the last year. But in October Hurlbut also became alarmed.

"I really warned him not to do this sort of thing, and I'm sad that it happened that way, 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 to science."

And Hurlbut, who is a doctor and a bioetist, says that it is not the only reason he is horrified

"We are the first species, and this is the first moment, after all, when we are in can alter human genetics so you can make a decision and drive the future of human evolution to a certain level, "Hurlbut says. "This is a very significant moment not only in human history but in the whole history of life."

Some scientists say hope that the organizers of the second international summit on the editing of the human genome will be held in Hong Kong, which coinciding with the revelation of He at the end of November, had taken a stronger position .

The organizers of the summit condemned the creation of genetically modified embryos that became 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 on a truly meaningful public discussion," says Collins. "There is still some possibility – I think a significant possibility – that that debate leads to the conclusion that it is predictable that this is a line we should not cross."

The organizers of the summit defend their position.

"Our summit statement did not require that this technology be made available to people, but simply traced a path towards responsible development of those jurisdictions that allow it to move forward," says R. Alta Charo, professor of law and bioethics at the University of Wisconsin, which 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 that we really needed 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 gene modification rules.

But many scientists argue that there may not be any way to stop any other rogue scientist from trying to make more genetically modified children too 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 in the world. Although there was news that he had been detained, his university denied it.


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