At its first meeting (18-19 March 2019), the WHO Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing (the Committee) agreed “on the need to provide a more structured mechanism for collecting and curating details of planned and ongoing research”. The Committee requested WHO to start work on developing a registry. In accordance with the principles of transparency and inclusivity, the Human Genome Editing (HGE) Registry aims at making information publicly accessible to all interested stakeholders. Failure to register any work that falls within the scope of the HGE Registry “must be considered as a fundamental violation of the principle of responsible stewardship of science.”

At its second meeting (26-28 August 2019), the Committee agreed to support a first phase of a new global registry to track research on human genome editing. The first phase is a pilot phase and it will include somatic and germline clinical trials. In order to ensure that the HGE Registry is fit for purpose and transparent, the Committee will engage with a broad range of stakeholders on how it will operate.

In a first phase, the HGE Registry will cover both somatic and germline clinical trials. The creation of the HGE registry that covers any proposed clinical trials involving genome editing tools on human embryos and germline cells does not mean that WHO advocates and endorses such activities. In a statement issued on 26 July 2019, the WHO Director General agreed with the  WHO Expert Advisory Committee’s recommendation that it would be irresponsible at this time for anyone to proceed with clinical applications of human germline genome editing.

In a second phase, the HGE Registry will also cover research using genome editing technologies on (i) human embryos and on (ii) germline cells or their progenitors when gametes derived from these will be used to create embryos, even when there is no attempt to initiate/establish a pregnancy.