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2019-08-31

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An expert advisory committee of the World Health Organisation (WHO) has approved the first phase of a global registry to track research on human genome editing as the UN’s international public health monitor seeks to address the ethical and regulatory challenges surrounding promising new technologies to address gene based treatments.

“New genome editing technologies hold great promise and hope for those who suffer from diseases we once thought were untreatable,” WHO’s director-general Dr. Tedros Adhanom Ghebreyesus said in a press release. “ But they also pose unique ethical, social, regulatory and technical challenges,” he noted, adding that countries should not allow any further work on human germline genome editing in human clinical applications until the technical and ethical implications had been properly considered.

Accepting the committee’s recommendation, WHO has now announced plans for an initial phase of the registry using the International Clinical Trials Registry Platform (ICTRP).

“This phase will include somatic and germline clinical trials,” the WHO said in the release. “In order to ensure that the registry is fit for purpose and transparent, the committee will engage with a broad range of stakeholders on how it will operate,” it added.

The 18-member expert committee also announced an online consultation on the governance of genome editing.

The committee called on all relevant research and development initiatives to register their trials. To enhance the development of a global governance framework for human genome editing, the committee will undertake both online consultations and in-person engagement.

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