Date: 29th August 2019
In March 2019, we reported the proposal by the World Health Organisation (WHO) to introduce a global registry for human genome editing. The role of a new advisory committee was to develop global standards for governance to provide a strong international framework in this area. The 18-member committee has now approved the first phase of the registry to track research on human genome editing and, as part of this, it has been emphasised by Dr Tedros Adhanom Ghebreyesus, the WHO’s Director-General, that any further work on germline genome editing in human clinical applications should not be permitted until the technical and ethical implications have been properly considered. Recent disclosures of intent to edit and grow embryos to term by a number of scientists highlights the relevance of this governance.
The initial phase of the registry will use the International Clinical Trials Registry Platform (ICTRP), and will include somatic and germline clinical trials and the Committee has called upon all relevant research and development initiatives to register their trials. In collaboration with a range of stakeholders it is hoped the framework will be fit for purpose whilst not stifling these promising technologies which offer hope for a wide range of debilitating, and often, fatal diseases.
Follow the press release for a more in depth view.