WHO Launches Registry for Gene Editing Studies

Regulatory NewsRegulatory News | 29 August 2019 |  By 

The World Health Organization (WHO) on Thursday announced the launch of its global registry for human genome editing research following the second meeting of the agency’s recently formed expert advisory committee on developing standards for governance and oversight of human genome editing.
WHO established the expert committee in December 2018 after Chinese scientist He Jiankui announced he had edited the genes of infant twin girls using CRISPR in an attempt to make them more resistant to HIV infection.
After its first meeting in March 2019, the committee called for the creation of a central registry for all human genome editing studies and concluded it is “irresponsible at this time for anyone to proceed with clinical applications of human germline genome editing.”
Now, after meeting from 26-28 August in Geneva, the committee recommended that WHO begin work on the registry and announced that it will launch a public consultation to solicit input on the governance of human genome editing.
“Since our last meeting, some scientists have announced their wish to edit the genome of embryos and bring them to term. This illustrates how important our work is, and how urgent. New genome editing technologies hold great promise and hope for those who suffer from diseases we once thought untreatable. But some uses of these technologies also pose unique and unprecedented challenges,” said WHO Director-General Tedros Adhanom Ghebreyesus.
The registry will be hosted on WHO’s International Clinical Trials Registry Platform (ICTRP), a network of international registries aimed at improving clinical trial transparency.
WHO says the initial phase of the registry for will include both somatic and germline clinical trials, with the expert committee calling on researchers and gene-therapy developers to register their trials.


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