"Post-Hong Kong: Human Genome Editing’s Brave New World." CSIS Commission on Strengthening America's Health Security, Center for Strategic and International Studies, March 27, 2019. Accessed January 24, 2020. https://healthsecurity.csis.org/events/post-hong-kong-human-genome-editing-s-brave-new-world/
A firestorm followed Professor He Jiankui’s disturbing announcement last fall in Hong Kong that he had made heritable genetic changes in human embryos that resulted in the birth of twin girls. Critics pointed to the lack of oversight and transparency, the inadequacy of the informed consent process, the lack of a compelling medical rationale, potential unknown future harms to the edited babies, and the lack of a clear consensus about the actual use of new, powerful gene editing technologies. This historic incident has stirred an intense debate over both the promise of these technologies to cure devastating diseases, such as Huntington’s Disease, and alarm over the idea that these same technologies might be used to create “designer babies.” The U.S. National Academy of Sciences and National Academy of Medicine, together with other international academies, have led vital international discussions over next steps.
On Wednesday, March 27, 2:00-3:30 pm, the CSIS Commission on Strengthening America’s Health Security and the National Academy of Medicine co-hosted a conversation on the unfolding debate as to whether human germline genome editing should be permitted, the types of applications which might be appropriate, the standards and criteria that should be followed, and what regulatory or governance framework is needed. Panelists included: Dr. Victor Dzau, President of the National Academy of Medicine; Tim Hunt, Senior Vice President for Corporate Affairs at Editas Medicine; Jeffrey Kahn, Andreas C. Dracopoulos Director of the Johns Hopkins Berman Institute of Bioethics; and Anne-Marie Mazza, Senior Director of the Committee on Science, Technology, and Law at the National Academies of Sciences, Engineering, and Medicine. Commission Secretariat Director and CSIS Senior Vice President and Global Health Policy Center Director J. Stephen Morrison moderated the discussion. The panelists emphasized the need for both better reporting mechanisms for scientists and better multi-stakeholder governance mechanisms at all levels, while acknowledging the difficulty of international governance of cutting-edge science. The panelists also noted that, as technology forges ahead, addressing concerns about equity and unsanctioned use of new technology will be critical.