Description
2020-21 saw the publication of five international reports and/or standards on human genome editing (HGE). In September 2020, in “Heritable Human Genome Editing”, the International Commission on the Clinical Use of Germline Genome Editing recommended an international body on crossing scientific and ethical thresholds in HGE. In October 2020, in its “Statement on Human Genome Editing”, the World Medical Association outlined recommendations for governments. In May 2021, the International Society for Stem Cell Research updated its “Guidelines for Stem Cell Research and Clinical Translation”, to include HGE. In July 2021, in “Human Genome Editing: A Framework for Governance”, the World Health Organization made recommendations on governance mechanisms at institutional to global levels. Finally, in December 2021, UNESCO issued the “Report of the International Bioethics Committee on the Principle of Protecting Future Generations”, which supports the WHO Framework, whilst also calling for the development of international law to prohibit heritable genome editing. This paper frames the teams of writers of these reports/standards as epistemic communities, each arriving at conclusions and recommendations based on a set of normative and causal beliefs. We analyse the impact of these epistemic communities on international HGE policy using the Advocacy Coalition Framework. We conclude that progress on enacting the recommendations of these epistemic communities in the international policy subsystem has been stifled by (a) the nuanced differences in the recommendations of the five different communities (b) the disjunct between the communities as scientific experts and those with the power to make international laws and policies and (c) the lack of dominance of any single coalition.
