WHO Panel Calls for Global Gene Editing Registry

Regulatory NewsRegulatory News | 19 March 2019 |  By 

The World Health Organization’s (WHO) newly-formed advisory panel on human genome editing is calling for the creation of a central registry for all human genome editing studies following a two-day meeting that concluded in Geneva on Tuesday.
WHO established the panel in December following reports that Chinese scientist He Jiankui had modified the genomes of a pair of twin girls to make them resistant to HIV infection. Jiankui’s claims prompted swift international backlash, with regulators in China proposing rules to restrict gene editing in humans and experts around the world calling for a moratorium on human germline editing.
The panel, which is co-chaired by former US Food and Drug Administration (FDA) Commissioner Margaret Hamburg and South African Constitutional Court Justice Edwin Cameron, also agreed that at this time any clinical applications of human germline editing are irresponsible.
Over the next 12-18 months, the panel is tasked with developing a set of global standards for governance and oversight of human genome editing, including both somatic cell and germline applications.
“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,” said WHO Chief Scientist Soumya Swaminathan.
Speaking at a press conference after the meeting, Hamburg said the committee felt an “urgent need … to create a registry for human genome editing research, such that studies being done using these technologies would be registered with WHO in a transparent way that would be accessible to all interested parties.”
Hamburg said that going forward, a subcommittee will be set up to work with WHO on how to implement the registry. To promote compliance with the registry, Hamburg said that WHO will be asking publishers and research funders to require that studies be registered prior to publication or receiving funding.
“We think it’s very important to establish this registry to get a better sense of the research that’s going on around the world,” Hamburg said, noting that the committee is still working out the specifics of the registry.


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