Table 6 The role of publics in ethical standard setting

Publics as ethical arbiters

∙ Ensuring ethical conduct in specific projects as well as through advocating for improved ethical review processes or principles [38]

∙ Public involvement in ethical review bodies (e.g. research ethics boards, institutional review boards) with influence in research systems, and to support public involvement in research (especially community-based participatory research) [41, 44, 61]

Public involvement as ethical balancing act

∙ Public involvement as challenge to essentialist notions of medical science as a form of knowledge that is, and should be, detached from social practices and norms [4, 19, 39]

∙ Need to reconceive notions of scientific excellence to include societal impact [19] and achieve “an optimal participation balance” between publics and other experts [2]