Governing with public engagement: an anticipatory approach to human genome editing
Dorit Barlevy, Eric T. Juengst, Jeffrey Kahn, Jonathan D. Moreno, Lauren Lambert, Alta Charo, Hervé Chneiweiss, Mahmud Farooque, David H. Guston, Insoo Hyun, Paul S. Knoepfler, Cynthia Selin, Rebecca Wilbanks, Manar Zaghlula, Christopher Thomas Scott
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.