The Promise and Reality of Public Engagement in the Governance of Human Genome Editing Research.
John M ConleyRosemary Jean CadiganArlene M DavisEric T JuengstKriste KuczynskiRami MajorHayley StancilJulio Villa-PalominoMargaret WaltzGail E HendersonPublished in: The American journal of bioethics : AJOB (2023)
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."