In a letter to Justice Edwin Cameron and Margaret Ann Hamburg, Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing, World Health Organization (WHO), the ISSCR shared its recommendations regarding plans to create a genome editing registry. The recommendations are intended to help to ensure that the proposed registry attracts legitimate submissions of fundamental and preclinical research and avoid abuse by businesses seeking to prematurely commercialize genome editing technologies.
Among other points, the ISSCR advised the creation of private registry that would enable WHO to collect data on unpublished research and monitor arising bioethical issues. The Society suggested that in parallel, a public registry of clinical trials involving genome editing would allow the WHO and other regulators to monitor research, while providing a resource for the identification of clinical trials and the recruitment of patients. This scenario would enable the WHO to properly monitor the registry for unscrupulous businesses that may misuse the registry.