WHO Human Gene Editing Expert Group: Start With A Global Registry

In its first meeting, a carefully chosen advisory committee of experts on gene editing under the World Health Organization this week agreed on the immediate need for a global registry of research that funders should make binding for researchers. The group acknowledged an urgency in addressing human gene editing governance in light of work already taking place, but stopped short of calling for a moratorium at this time, instead issuing a statement that it would be “irresponsible” for anyone to proceed with such research now.

Such a registry “will make a difference” and increase transparency, committee Co-Chair Margaret Hamburg told reporters on a call today. The registry is foreseen for both germline and somatic (in the body) research, she said.

Hamburg is immediate past president of the American Association for the Advancement of Science (AAAS) and former head of the US Food and Drug Administration. She said the group made “great progress” toward defining how to move forward to implement their mandate. Also speaking on the call was Vasee Moorthy, coordinator for research and ethics, in the new Division of the Chief Scientist at WHO.

“Transparency, inclusivity, and responsibility” were three agreed-upon principles during the 18-19 March closed-door meeting at WHO, according to participants. During the two days, the committee reviewed the current state of science in this area to look at the spectrum of known genomic research, and got updates of previous initiatives. They agreed on the need to address issues in the near term and long term, and expect it will take 18 months to complete their work.

The WHO webpage on human genome editing is here. The list of experts on the committee is here.

On the registry of human genome research, few specifics were given beyond the recommendation urging the WHO to create it so work being done would be registered for all interested parties. There will be a meeting on how the registry would work and how to develop it over time, Hamburg said. People will need to ensure that research that is published is registered, and funders will be asked to make registering a requirement.

Officials were asked on the call about the case of a researcher in China claimed to successfully have edited embryos to make two babies, and what the representative from China on the panel said. They answered that the committee heard about new legislation in China and what it hopes to achieve, but that the work of the committee is not to investigate cases but to work toward establishing a broader framework.

The committee will look at a global governance framework, building on WHO’s unique position as the intergovernmental body on health, and will look at where self-governance has been working and not working, officials said.

On inclusivity, this builds on the WHO’s unique position as a coordinating center, and would expand what is on the WHO website with links to other initiatives.

The two-day meeting was attended by 17 of the 18 committee members, with only Co-Chair Justice Edwin Cameron unable to come. A meeting report from this week will follow, but the group is not scheduled to report to this year’s annual World Health Assembly in May, officials said.

Three more in-person meetings are anticipated, with opportunities for teleconferences in between. In addition, subcommittees are being set up, and questions will be posed to a wide range of stakeholders, they said.

The expert committee is a technical consultation process called for under the WHO Global Programme of Work that will develop recommendations to the WHO director general on steps to be taken forward. It is a geographically diverse group.

Today’s WHO press release from the meeting is reprinted below:

WHO expert panel paves way for strong international governance on human genome editing

The World Health Organization’s new advisory committee on developing global standards for governance and oversight of human genome editing has agreed to work towards a strong international governance framework in this area.

“Gene editing holds incredible promise for health, but it also poses some risks, both ethically and medically. This committee is a perfect example of WHO’s leadership, by bringing together some of the world’s leading experts to provide guidance on this complex issue. I am grateful to each member of the Expert Advisory Committee for their time and expertise.” says Dr Tedros Adhanom Ghebreyesus, WHO Director-General.

Over the past two days, the committee of experts reviewed the current state of science and technology. They also agreed core principles of transparency, inclusivity and responsibility that underpin the Committee’s current recommendations. The committee agreed that it is irresponsible at this time for anyone to proceed with clinical applications of human germline genome editing.

The committee also agreed that a central registry on human genome editing research is needed in order to create an open and transparent database of ongoing work. The committee asked WHO to immediately begin working to establish such a registry.

The committee has invited all those conducting human genome editing research to open discussions with the committee to better understand the technical environment and current governance arrangements and help ensure their work meets current scientific and ethical best practice.

The committee will operate in an inclusive manner and has made a series of concrete proposals to increase WHO’s capacity to act as an information resource in this area.

“The committee will develop essential tools and guidance for all those working on this new technology to ensure maximum benefit and minimal risk to human health,” says Dr Soumya Swamanathan, WHO Chief Scientist.

Over the next two years, through a series of in-person meetings and online consultations, the committee will consult with a wide range of stakeholders and provide recommendations for a comprehensive governance framework that is scalable, sustainable and appropriate for use at the international, regional, national and local levels. The committee will solicit the views of multiple stakeholders including patient groups, civil society, ethicists and social scientists.


Image Credits: Pixabay CC.

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