Series
The 5th ELSI Congress - ELSIcon2022
ELSIcon2022 Paper: Public Engagement in Governance of Human Genome Editing in the Post-He Jiankui Era
Type
Conference
ELSIcon2022 • Paper • June 3, 2022
John Conley, Eric Juengst, Rebecca Walker, Jean Cadigan, Gail Henderson
When scientists meeting at Asilomar in 1975 wrote guidelines for recombinant DNA technology, the public deferred to their judgment. With CRISPR-based human genome editing (HGE), governance and regulation have not kept pace, as evidenced by He Jiankui’s 2018 unethical human studies. Recent international recommendations promote a democratizing role for “the public” to foster effective, equitable, and legitimate global governance of HGE. Some, however, argue that post-2018 international governance quickly moved instead to a self-regulatory model enacted through high-level expert groups with little or no public input.
We update this account based on over a year of conference observations and interviews with international genome scientists, ethicists, and policy makers who are active in governance debates. Three themes emerge: First, scientists are acutely aware of the social contexts of gene editing decisions, and uncomfortable with either making those decisions unilaterally or abrogating that responsibility. Second, scientists continue to influence policy through established routes of public engagement, including decision making bodies such as the Australian global citizen assemblies and the UK Human Fertilization and Embryology Authority. Third, innovative scientific groups are responding to concerns about “rogue scientists,” the shortcomings of international governance, and perceived deficits in national governance capacities, by promoting new interdisciplinary networks and organizations for gene editing, pushing to enable “publics” from the global south to influence justice-based policy, and/or seeking to re-assert scientific authority through scientist-driven public education. These different responses suggest a complex landscape within the scientific community regarding preferred routes for ongoing dialogue with the public.
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Gene therapy and gene editing
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