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Francis Collins, Director, National Institutes of Health, speaks at the Milken Institute 21st Global Conference in Beverly...

NIH director says there’s work to do on regulating genome editing globally

WASHINGTON — The apparent birth this month of the first genetically modified babies is “a lesson in the potential for human hubris to overtake us,” Dr. Francis Collins, the director of the National Institutes of Health, told STAT Thursday, but he said there is little U.S. officials can do to influence how China sanctions the rogue scientist who claims to have led the ethically dubious scientific breakthrough.

Collins said he was glad to see that Chinese authorities on Thursday suspended the researcher’s work, which they deem illegal, and said they were launching an investigation. “I welcome their announcement that they will not be allowing other experiments of this sort at this time, and that there will be consequences for people who break this law,” he said in his first interview since the news of the births roiled the worldwide scientific community.

Chinese researcher He Jiankui announced Sunday that he had used the genome editing technology CRISPR-Cas9 to alter the DNA of human embryos — a procedure, known as germline editing, that results in changes to the genome that would be inherited by future generations. The embryos were used to produce twin girls. He has since admitted to starting a second pregnancy with edited embryos.

While Collins said in a statement issued Wednesday that the revelation of CRISPR babies highlighted the need for a “binding international consensus” on germline gene editing, he acknowledged there is little consensus as to how governments should translate such scientific opinions into law. It is “not entirely obvious,” Collins said, that the United Nations is the international body best equipped to police gene-editing research either.

“That’s what everybody’s wrestling with, of course,” Collins said. “We do not, at the present time, have an international bioethics body that is capable of coming up with consensus guidelines that are then enforceable across the world.”

Collins expressed confidence in the strength of American laws that prohibit scientists from pursuing such research. “It was illegal before last week and it’s illegal now,” Collins said. “And until there’s a strong reason to change that perspective, it will continue to be so here in the United States.”

Since the announcement from China, NIH has received frequent updates from Carrie Wolinetz, its scientific policy lead, who traveled to Hong Kong for a conference on genome editing that was ultimately dominated by He’s surprise announcement.

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The U.S. biomedical research chief has not yet briefed the White House or health secretary Alex Azar, he said, but hopes to make clear to other federal officials “why this is seen by virtually everyone as an unfortunate scientific misadventure.”

Though the research took place in China, Collins said the NIH was taking preliminary steps to investigate a Rice University researcher who served as He’s graduate advisor when He pursued graduate study at the school and who has acknowledged participating in his protege’s research.

“I think all of us are wondering about the role of Michael Deem,” Collins said, “who by his description was present at the consenting of couples that took part in this gene-editing enterprise.”

Since Deem is an American scientist at an NIH grantee institution, Collins said, the agency has requested additional information from the university. Rice has already denied knowledge of He’s work or Deem’s role in it, and on Monday announced it had begun its own investigation. Deem has not responded to requests for comment.

Another researcher, Mark DeWitt of the University of California, Berkeley, told STAT this week that He had informed him of the research a year ago. DeWitt said he counseled He against the project over coffee, to no avail.

While Collins said He’s work in China had done little to change his optimism about the potential of gene therapies, including genome editing, to treat and even cure diseases, he expressed worry that fallout from the birth of gene-edited twin girls could politically and economically chill research into such treatments — even though those therapies do not modify human DNA that is passed onto offspring.

“If I have a concern here, it’s that those who haven’t been tracking this closely might conclude that the whole field of gene editing is fraught with ethical challenges,” he said, citing treatments under development for diseases including sickle cell anemia and muscular dystrophy. “And just at the point where we have such dramatic opportunity for therapeutic benefit through somatic uses of gene editing, there might be a chill applied to that field in a way that results in some political or financial consequences, that would be a terrible tragedy.”

Despite the seriousness of the topic, Collins laughed while describing the way he learned of He’s work: “I found out Monday morning listening to Rob Stein as I was getting out of the shower,” he said, referring to the science correspondent for National Public Radio.

His overriding concern, however, took a far different tone.

“We should all hope and pray that these two little girls are OK,” he said. “They did nothing to bring this trouble down upon them. They certainly didn’t give their consent. As much as we have anxieties about whether bad things might have happened in the process of manipulating their genomes, let’s all hope that’s not the case, that they will be fine. I don’t think they will be benefited significantly by this, but let’s just hope they haven’t been hurt.”

This article is reproduced with permission from STAT. It was first published on Nov. 29, 2018. Find the original story here.

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