WHO to Create Global Advisory Panel on Human Gene Editing

Marcia Frellick

December 18, 2018

The World Health Organization (WHO) is creating a global panel to study human gene editing and the scientific, legal, social, and ethical challenges that surround it so the organization may move toward standards for oversight and governance.

The multidisciplinary panel will examine the literature and social attitudes about the practice and work with international agencies including the United Nations and the National Academies of Sciences, Engineering, and Medicine to understand how to promote transparency, build trust, and ensure that thorough risk/benefit assessment has been done before any case is authorized, according to a WHO press release.

WHO's announcement last week came in the wake of uses of CRISPR-Casp9 that most recently included Chinese academic He Jiankui's claims on YouTube that he edited the genes of twins born last month to help make them resistant to HIV.

The Southern University of Science and Technology in Shenzhen, China, the university from which He has been on leave without pay since February, said it was not aware of the research and is launching an investigation.

The work is a "serious violation of academic ethics and standards," the university said, according to Reuters.

He's announcement set off a flurry of commentaries, some calling his acts premature, irresponsible, and morally indefensible.

WHO Panel Gets Mixed Reaction

Some experts praise efforts to set international standards for human gene editing.  

"To maintain the public's trust that someday genome editing will be able to treat or prevent disease, the research community needs to take steps now to demonstrate that this new tool can be applied with competence, integrity, and benevolence," the US National Academy of Medicine's Victor Dzau, the US National Academy of Sciences' Marcia McNutt, and the Chinese Academy of Sciences' Chunli Bai said in a December 14 editorial in Science.

But others say the practice should just be banned and add that attempts to set guidelines for oversight have failed in the past.

Fyodor Urnov, PhD, from the Altius Institute for Biomedical Sciences in Seattle, Washington, told NPR that the US academies already did years ago what the editorial urges.

"How well did that work?" he asks.

Katie Hasson, PhD, program director for genetic justice at the Center for Genetics and Society in Berkeley, California, told Medscape Medical News that she agrees that the WHO panel needs to be different from previous panels on the subject. She said that, for one thing, it needs to have more representatives from advocate groups and social scientists in addition to scientists and bioethicists.

"If the question is what are the societal risks, then you need people who are experts in that area," she said. "You need people who are experts in the social dynamics and the historical examples of how technologies have been used. You need people who are already engaged in work around the kinds of inequalities and oppressions that are likely to intersect with the technology."

Having the conversation is important, particularly internationally, Hasson said, but that conversation needs to start with whether human germline editing should be done at all, and so far the world consensus seems to lean toward no, she said.

"This really needs to be a decision that's made with broad public deliberation and it's not for individual scientists or even small expert panels to make that decision," she added.

Other Gene-editing Projects in Works

Carolyn Neuhaus, PhD, research scholar with The Hastings Center in Garrison, New York, returned weeks ago from the Second International Summit on Human Genome Editing, in Hong Kong.  

She told Medscape Medical News that, although He's claims may have been the immediate catalyst for the WHO panel, other scientists already have human gene-editing projects in the works, some of them presented at the summit, so it's important to develop standards now.

"There are lots of good reasons to think it should never be done, but, in fact, it is. And there are people, including parents and family members, who really want it to be done." Their needs and vulnerabilities need to be considered, she said.

It's important for WHO to convene this panel "because of their international stature" to go beyond efforts by the national academies, individual nations, or individual societies, Neuhaus said.

"They have an important leadership role to play in the international community," she said.

WHO said in the statement that they would publish the names of panel members once selections are made and conflicts of interest are assessed.

Hasson and Neuhaus have disclosed no relevant financial relationships.

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