He Juankui from the Southern University of Science and Technology in China said this week he is the first to successfully create a genetically modified baby — but he supplied no evidence of his claim.
"At this point we have somebody releasing information on YouTube and maybe announcing something at a conference," said Michael Kalichman who is director of UC San Diego's Research Ethics Program. "That’s not evidence, that’s not science."
So why have so many news outlets picked up the story?
"I think the answer is because it's touching on a topic that is so exciting — so tantalizing to everyone," Kalichman said. "The idea that we can manipulate the genes of a future human being."
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The China-based scientist claims he did "gene surgery" on human embryos to protect them from HIV. He said there were seven couples involved in the research, all of the men were HIV positive and the women were not. After claims about twins being born without HIV made headlines, the university he worked at put out a scathing statement. The Southern University of Science and Technology said it was shocked this might have happened and He had been on leave from the school since February. The university also said it was unaware of the research and, "utilizing CRISPR/Cas9 to edit human embryos has seriously violated academic ethics and codes of conduct."
The university has promised to investigate the reported incident.
"He violated just about every standard of research ethics that there is," said Mary Devereaux who is assistant director of UC San Diego's Research and Ethics Program. "He did not disclose to his research institution he was doing this and it was not disclosed to the scientific community."
The scientist said the twins were born a few weeks ago and are healthy, but Devereaux disagrees with that early assessment.
"He’s in no position to say that these children are as healthy as any other children," she said. "We won’t know perhaps for years whether the gene tampering he did, although it was on a single gene that we know, has any off-target effects."
At a genome conference in China this week, He said he hopes to monitor the newborns for the next 18 years and then into adult life.
"These were children who were not in any sense able to be asked themselves," Devereaux said. "Their parents were asked to sign something to allow them to be experimented on this way — but basically I think this was a violation of human rights."
He’s claims have not been peer-reviewed and published, although the scientist said he is now going through that process.
"We have clear standards and practices in place in order to make research both extremely rigorous and extremely safe," Devereaux said.
There are still many questions about the informed consent process, or what the parents who signed up for this research really knew what they were getting into.
"Who reviewed this project and decided that the risks are sufficiently small and the potential benefits are worth going ahead?" Kalichman said. "Who decided that the process was one in which you could truly get informed consent from the parents?"
He has said the research was discussed with other scientists and doctors but has not provided specifics.
"From the perspective of science it’s unproven," Kalichman said. "So the patient is choosing something that is not proven to be safe, not proven to be effective."
