WHO introduces global registry on human genome editing

The World Health Organisation (WHO) expert advisory committee has approved the first phase of a new global registry to track research on human genome editing.

The UN health agency in a statement via its website on Friday said the 18-member committee also announced an online consultation on the governance of genome editing.

Human genome editing has been raising controversy in the international medical space as there is no regulating body or laws to monitor what scientists do.

WHO last month strongly warned against clinical modification of the gene of eggs, sperms or the embryo to produce genetically edited babies.

WHO Director-General, Tedros Ghebreyesus, had said “it would be irresponsible for any anyone at this time to proceed with clinical application of human germline genome editing” without an agreed international standard regulating the practice.

Gene Controversies

The committee was constituted against the backdrop of the latest events of scientists clinically conducting human germline genome editing without international regulation.

The calls for stiffer regulation arose after a Chinese researcher, He Jiankui, in 2018 said he had used a gene-editing technology known as CRISPR to make the world’s first genetically-edited babies.

He used the CRISPR technique to modify the CCR5 gene on the embryos of seven couples, in order to make them resistant to the HIV virus. One of the couples subsequently gave birth to twins – Lulu and Nana.

The international community is yet to establish standards for gene-editing researches. Global ethical principles will prevent unethical researchers from moving to whichever country that has the loosest regulations.

Progress

Addressing the second meeting of the committee on effective governance and oversight of human genome editing, Mr Ghebreyesus said since their last meeting, some scientists had 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 – ethical, social, regulatory and technical,” he said.

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Mr Ghebreyesus emphasised that countries should not allow any further work on human germline genome editing in human clinical applications until the technical and ethical implications have been properly considered.

Accepting the recommendation of the committee, WHO announced plans for an initial phase of the registry using the International Clinical Trials Registry Platform (ICTRP), 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 with a broad range of stakeholders on how it will operate” it stated.

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 online consultations and in-person engagement.