Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2023 Jul;23(7):9-16.
doi: 10.1080/15265161.2023.2207502. Epub 2023 May 19.

The Promise and Reality of Public Engagement in the Governance of Human Genome Editing Research

John M Conley  1 , R Jean Cadigan  2 , Arlene M Davis  2 , Eric T Juengst  2 , Kriste Kuczynski  2 , Rami Major  2 , Hayley Stancil  1 , Julio Villa-Palomino  2 , Margaret Waltz  2 , Gail E Henderson  2
Affiliations

The Promise and Reality of Public Engagement in the Governance of Human Genome Editing Research

John M Conley et al. Am J Bioeth. 2023 Jul.

Update in

Abstract

This paper analyses the activities of five organizations shaping the debate over the global governance of genome editing in order to assess current approaches to public engagement (PE). We compare the recommendations of each group with its own practices. All recommend broad engagement with the general public, but their practices vary from expert-driven models dominated by scientists, experts, and civil society groups to citizen deliberation-driven models that feature bidirectional consultation with local citizens, as well as hybrid models that combine elements of both approaches. Only one group practices PE that seeks community perspectives to advance equity. In most cases, PE does little more than record already well-known views held by the most vocal groups, and thus is unlikely to produce more just or equitable processes or policy outcomes. Our exploration of the strengths, weaknesses, and possibilities of current forms of PE suggests a need to rethink both "public" and "engagement."

Keywords: Public engagement; citizen assembly; citizen jury; genome editing; governance; regulation.

PubMed Disclaimer

Conflict of interest statement

Declaration of Interest Statement

None of the authors has any interest to declare.

Comment in

References

    1. Adashi E, Burgess M, Burall S, Cohen G, Fleck L, Harris J, Holm S, Lafont C, Moreno J, Neblo M, Niemeyer S, Rowe E, Scheufle D, Testa P, Vayena E, Watermeyer R, and Fung A. 2020. Heritable human genome editing: The public engagement imperative. The CRISPR Journal. 3(6): 434–439. - PubMed
    1. Blasimme A 2019. Why include the public in genome editing governance deliberation? American Medical Association Journal of Ethics. 21(12): 1065–1070. - PubMed
    1. Boring N 2021. “France: President Macron signs new law on bioethics.” Global Legal Monitor, Library of Congress Digital Collection. https://www.loc.gov/item/global-legal-monitor/2021-11-16/france-presiden... (accessed Sept. 9, 2022).
    1. Council of Europe, Committee on Bioethics. 2019. Guide to Public Debate on Human Rights and Biomedicine. Strasbourg: Council of Europe.
    1. Cadigan RJ, Waltz M, Henderson GE, Conley JM, Davis AM, Major R, and Juengst ET. Forthcoming. Scientists’ views on scientific self-governance for human genome research. Human Gene Therapy. - PMC - PubMed

LinkOut - more resources