Center for Medical Ethics and Health Policy Staff Publications
Publication Date
8-1-2024
Journal
Science and Public Policy
DOI
10.1093/scipol/scae010
PMID
39035203
PMCID
PMC11258878
PubMedCentral® Posted Date
5-25-2024
PubMedCentral® Full Text Version
Post-print
Published Open-Access
yes
Keywords
human genome editing, anticipatory governance, public engagement
Abstract
In response to calls for public engagement on human genome editing (HGE), which intensified after the 2018 He Jiankui scandal that resulted in the implantation of genetically modified embryos, we detail an anticipatory approach to the governance of HGE. By soliciting multidisciplinary experts’ input on the drivers and uncertainties of HGE development, we developed a set of plausible future scenarios to ascertain publics values—specifically, their hopes and concerns regarding the novel technology and its applications. In turn, we gathered a subset of multidisciplinary experts to propose governance recommendations for HGE that incorporate identified publics’ values. These recommendations include: (1) continued participatory public engagement; (2) international harmonization and transparency of multiple governance levers such as professional and scientific societies, funders, and regulators; and (3) development of a formal whistleblower framework.