The Chinese scientist who says he helped make the world’s first gene-edited babies is being slammed by his own university, as well as scientists around the world, for unethical conduct.
He Jiankui said twin girls born earlier this month have altered DNA to help resist any possible future infection of HIV.
The research hasn’t been independently verified or peer reviewed, but if He’s claim is true, it would be the first such case of a baby being born with edited genes.
Scientists around the world are condemning the research, including He’s workplace, the Southern University of Science and Technology in China.
“The SUSTech Department of Biology Academic Committee believes that Dr. Jiankui HE’s conduct in utilizing CRISPR/Cas9 to edit human embryos has seriously violated academic ethics and codes of conduct,” the university said in a statement.
“All research conducted at SUSTech is required to abide by laws and regulations and comply with international academic ethics and codes of conduct.”
The university said it will call for international experts to form a committee to investigate the research.
Vardit Ravitsky, professor of bioethics at the University of Montreal, explained why.
“This is an act that violates every ethical guideline, and he shouldn’t have done it,” she said.
“There’s no evidence of safety or efficacy to use this on human embryos… there has been a clear understanding that the science is not ready, and it should not be used to create a pregnancy,” she explained.
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The safety concerns mentioned by Ravitsky include the fact that there hasn’t been enough research to ensure that no other genes will be affected when editing one gene — called off-target editing.
“If he did it, we’ll have to wait and see what the outcome is, but He put them at grave, grave risk.”
University of Pennsylvania gene editing expert Kiran Musunuru echoed these worries.
“You’re exposing that child to all the unknown safety risks,” Musunuru told the Associated Press.
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Another issue is that changes in DNA are inheritable.
“All the children (who) are the descendants of these two girls will have the same modification,” Ravitsky said, which will have impacts on evolution as a whole.
However, He stood by his work, saying that if the gene editing causes unwanted side effects or harm: “I would feel the same pain as they do, and it’s going to be my own responsibility.”
“I believe this is going to help the families and their children,” he added.
According to the National Academies of Sciences, Engineering and Medicine, “clinical trials using heritable genome editing should be permitted only within a robust and effective regulatory framework.”
That framework includes making sure there are no other alternatives before editing the genes.
“If it’s ever safe and if we decide to try it after a broad public debate, we should try it in a case (with a) serious disease that has no cure,” Ravitsky explained, saying there were other options to prevent the transmission of HIV in this case.
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“He did it for something that many would consider enhancement and not treatment, not prevention.”
While He’s research is related to health, Ravitsky called it the “grey zone” of enhancement and said the next stage of this type of research could be eugenics where the baby’s hair colour, eye colour and physical traits are chosen.
He said if he didn’t do it, someone else would have.
“There will be someone, somewhere, who is doing this. If it’s not me, it’s someone else,” He said.
However, one famed geneticist, Harvard University’s George Church, defended attempting gene editing for HIV, which he called “a major and growing public health threat.”
“I think this is justifiable,” Church said of that goal.
In Canada, research and clinical trials on gene editing are illegal.
Ravitsky said there are safeguards to prevent the creation of designer babies — but she says banning the research is too far.
“I think we draw the line too early because we don’t even allow the research to be done,” she said.
“There’s a lot of good things that we can learn from the research before we make babies.”
She’s worried that because He went ahead without approval from the ethics community, people will use his example to prevent research from being done in Canada.
“We can draw the line between research and reproduction,” she argued, saying there is a responsible way to do such research. “We can spend the years to do the research and learn more before we even consider reproduction.”
*with files from the Associated Press