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Governing with public engagement: an anticipatory approach to human genome editing.
Barlevy, Dorit; Juengst, Eric; Kahn, Jeffrey; Moreno, Jonathan; Lambert, Lauren; Charo, Alta; Chneiweiss, Hervé; Farooque, Mahmud; Guston, David H; Hyun, Insoo; Knoepfler, Paul S; Selin, Cynthia; Wilbanks, Rebecca; Zaghlula, Manar; Scott, Christopher Thomas.
  • Barlevy D; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, United States.
  • Juengst E; Center for Bioethics, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599, United States.
  • Kahn J; Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD 21205, United States.
  • Moreno J; Department of Medical Ethics and Health Policy, University of Pennsylvania, Philadelphia, PA 19104, United States.
  • Lambert L; College of Global Futures, Arizona State University, Tempe, AZ 85287, United States.
  • Charo A; Law School, University of Wisconsin-Madison, Madison, WI 53706, United States.
  • Chneiweiss H; Neuroscience, Institute of Biology Paris Seine, CNRS UMR8246, INSERM U1130, Sorbonne Université, Paris 75252, France.
  • Farooque M; Consortium for Science, Policy & Outcomes, Arizona State University, Washington, DC 20006, United States.
  • Guston DH; School for the Future of Innovation in Society, Arizona State University, Tempe, AZ 85281, United States.
  • Hyun I; School for the Future of Innovation in Society, Arizona State University, Tempe, AZ 85281, United States.
  • Knoepfler PS; Julie Ann Wrigley Global Futures Laboratory, Arizona State University, Tempe, AZ 85287, United States.
  • Selin C; Museum of Science, Boston, MA 02114, United States.
  • Wilbanks R; Center for Bioethics, Harvard Medical School, Boston, MA 02115, United States.
  • Zaghlula M; Department of Cell Biology & Human Anatomy, UC Davis School of Medicine, Davis, CA 95616, United States.
  • Scott CT; School for the Future of Innovation in Society, Arizona State University, Tempe, AZ 85281, United States.
Sci Public Policy ; 51(4): 680-691, 2024 Aug.
Article en En | MEDLINE | ID: mdl-39035203
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.
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