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A WHO Expert Advisory Committee has approved the first phase of a new global registry to track research on the editing of the human genome. The 18-member committee also announced an online consultation on the governance of genome editing.
Addressing the second meeting of the Committee on Effective Governance and Control of Human Genome Publishing, Dr. Tedros Adhanom Ghebreyesus, Director General of WHO, said: "Since our last meeting, scientists announced their wish to alter the genome of the embryos and bring them. futures. It shows how important and urgent our work is. The new genome editing technologies are bringing hope and hope for those who suffer from diseases that we once thought impossible to cure. But some uses of these technologies also pose unique and unprecedented challenges – ethical, social, regulatory and technical. "
Dr Tedros stressed that countries should not allow any further work on human lineage genome editing in clinical applications until the technical and ethical implications have been duly taken into account.
In accepting the Committee's recommendation, WHO has announced its intention to proceed with an initial phase of the registry using the International Registry of Clinical Trials (ICTRP) platform, a WHO entity. This phase will include somatic and germline clinical trials. In order to ensure that the registry is fit for purpose and transparent, the committee will engage a wide range of stakeholders on its operation. The Committee called on all relevant research and development initiatives to register their tests. To strengthen the development of a global governance framework for the human genome review, the Committee will organize online consultations and face-to-face engagement.
Dr. Tedros announced the creation of a WHO advisory committee on the development of global standards for governance and control of human genome editing in December 2018.
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