Emily Doerksen

Around the world, a growing number of communities are voicing their demands for authority in the governance of research involving them. Many such communities have experienced histories of exploitative, stigmatizing, intrusive research that failed to benefit them. To better understand what strategies communities are developing in order to have a say in research oversight, we conducted a scoping review of the international peer-reviewed and grey literature. Three primary strategies were identified: (1) guidelines; (2) community review boards; and (3) community advisory boards. Guidelines include documents developed by, with, or for communities to outline ethical behavior or conduct in research with or within the community. Community review boards offer ethical review of research protocols, much like traditional research ethics boards, but are community led and focus on community interests. Community advisory boards consist of representatives from a given community and are developed to advise institutions or research teams on community-level ethical matters pertaining to research projects. Initiatives led by Indigenous communities far outnumbered others in the sample, reflecting the legacy of continuous Indigenous resistance to research as a tool of colonialism. In several cases, communities in marginalized neighbourhoods, where harmful and exploitative research practices have taken place, emphasized the significance of community-led governance grounded in shared geographical and social contexts. We discuss some of the beneficial and challenging features of each type of strategy and offer recommendations for stakeholders who wish to support community-led efforts in research ethics.

Urban communities experiencing marginalization often disproportionately bear the risks and burdens of research and are left out of research ethics governance processes. To address this, many communities have created place-based and community-led research ethics governance initiatives to ensure that community voice is included in discussions surrounding research conduct. Place-based strategies in the Vancouver Downtown Eastside, the Bronx, and the Philadelphia Promise Zone successfully mobilize community perspectives in research ethics, filling in a significant gap in our current system of institutional research ethics review and oversight. These cases demonstrate that place-based research ethics governance has the potential to account for the community-level risks posed by research projects and to ensure communities receive more felt benefits. Place-based communities sidestep simplistic notions of identity based on single shared features and make space for intersectional analyses and diverse community viewpoints to be considered. Such communities have a unique claim to expertise given their shared experience of place, which grants them the ability to see problematic assumptions embedded in scientific projects as well as community-level concerns within research. Despite this, many marginalized communities are excluded from current research ethics oversight processes. This exclusion demands critical examination and a way forward to facilitate the integration of place-based community oversight strategies within research ethics governance.

Dubljević and company’s proposed approach for incorporating a socio-political perspective into neuroethics has clear potential to help mitigate the effects of research ‘hype’ relating to neuroethics. Their approach serves as a social regulation meant to improve the realizability of neuroethics research. Drawing on Dubljević et al. s suggestion, we consider how incorporating a socio-political perspective in other scientific disciplines could help the scientific community as a whole move beyond the infamous ‘reproducibility crisis’ in science. The reproducibility crisis is a concern in science stemming from the revelation that most scientific results are difficult, or impossible, to replicate (Frias-Navarro et al., 2020). By applying the four principles proposed by Dubljević et al., the scientific community can avoid many of the pitfalls that have led to the reproducibility crisis, such as the file drawer effect, a publication bias preventing negative results from being published, or the publish-or-perish culture - the pressure for scientists to publish highly influential papers in high impact journals in order to keep their funding (Rosenthal, 1979; Begley & Ioannidis, 2015). As such, we argue that, in its final form, this socio-political framework begs for true open science, wherein systematically sharing data would enable enlightened policymaking by showing a picture closer to the ground-level realities of scientific research.