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.”. (shrink)

ABSTRACT:What more can be said about COVID-19 and the social determinants of health? This article describes neglected perspectives that derive from the history of social epidemiology, a field that identifies the social etiology of disease and variations in disease incidence among people differentially located in the social structure. The "discovery" of social determinants of diseases like COVID-19 is nothing new for epidemiology: debate over how to analyze structural determinants versus individual-level risk factors persisted throughout the 19th and 20th centuries. By (...) the late 20th century, research had highlighted fundamental causes of health disparities, such as social conditions and structural racism; these are structural factors, embedded in the social fabric of life. Measurement of structured inequalities within systems faces complex and challenging problems, as research aims to better account for these lived realities at different levels of analysis and as multiple factors merge to influence outcomes (revealed in intersectionality theory). At each of these intersections, there are opportunities for bioethicists to consider their ethical implications. It is imperative to understand the social and ethical roots of our present conversations about health inequalities, in order to partner intelligently with researchers on the forefront of advocating for change. (shrink)