Governing with public engagement: an anticipatory approach to human genome editing

Author:

Barlevy Dorit1ORCID,Juengst Eric2,Kahn Jeffrey3ORCID,Moreno Jonathan4,Lambert Lauren5,Charo Alta6,Chneiweiss Hervé7,Farooque Mahmud89ORCID,Guston David H910,Hyun Insoo1112ORCID,Knoepfler Paul S13,Selin Cynthia914,Wilbanks Rebecca15,Zaghlula Manar16,Scott Christopher Thomas1ORCID

Affiliation:

1. Center for Medical Ethics and Health Policy, Baylor College of Medicine , Houston, TX 77030, United States

2. Center for Bioethics, University of North Carolina at Chapel Hill , Chapel Hill, NC 27599, United States

3. Berman Institute of Bioethics, Johns Hopkins University , Baltimore, MD 21205, United States

4. Department of Medical Ethics and Health Policy, University of Pennsylvania , Philadelphia, PA 19104, United States

5. College of Global Futures, Arizona State University , Tempe, AZ 85287, United States

6. Law School, University of Wisconsin–Madison , Madison, WI 53706, United States

7. Neuroscience, Institute of Biology Paris Seine, CNRS UMR8246, INSERM U1130, Sorbonne Université , Paris 75252, France

8. Consortium for Science, Policy & Outcomes, Arizona State University , Washington, DC 20006, United States

9. School for the Future of Innovation in Society, Arizona State University , Tempe, AZ 85281, United States

10. Julie Ann Wrigley Global Futures Laboratory, Arizona State University , Tempe, AZ 85287, United States

11. Museum of Science , Boston, MA 02114, United States

12. Center for Bioethics, Harvard Medical School , Boston, MA 02115, United States

13. Department of Cell Biology & Human Anatomy, UC Davis School of Medicine , Davis, CA 95616, United States

14. School of Sustainability, Arizona State University , Tempe, AZ 85281, United States

15. University Writing Program, Johns Hopkins University , Baltimore, MD 21218, United States

16. Innovative Genomics Institute, University of California , Berkeley, CA 97404, United States

Abstract

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.

Funder

National Human Genome Research Institute

Publisher

Oxford University Press (OUP)

Reference101 articles.

1. Heritable Human Genome Editing: The Public Engagement Imperative;Adashi;The CRISPR Journal,2020

2. Heritable Human Genome Editing: The International Commission Report;Adashi;JAMA,2020

3. Direct-to-consumer Testing 2.0: Emerging Models of Direct-to-consumer Genetic Testing;Allyse;Mayo Clinic Proceedings,2018

4. Public Attitudes toward Genetics & Genomics Research: Literature and Poling Review Report;American Society of Human Genetics,2020

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