Community-led approaches to research governance
A scoping review of strategies
Bibliographic Data
| ID | 21787594 |
|---|---|
| Authors | Emily Doerksen (0000-0002-3595-3755), Alize E Gunay (McGill University), Scott D Neufeld (0000-0001-8086-7752, Brock University), Phoebe Friesen (0000-0002-1529-916X, McGill University, corresponding author) |
| Year | 2025 |
| Volume | 21 |
| Issue | 3 |
| Pages | 519-545 |
| Publication date | 2025-07-01 |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Research Ethics (JOURNAL) |
| Journal identifiers | ISSN: 1747-0161 • E-ISSN: 2047-6094 |
| Publisher | SAGE Publications (PUBLISHER • US) |
| DOI | 10.1177/17470161241269154 |
| OpenAlex | W4402950882 |
| Language | EN |
| Citations received | 5 |
| References cited | 34 |
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
Business · Corporate governance · Environmental planning · Political science · Sociology · Environmental Science · Ethics in Clinical Research · Global Health and Surgery · Health and Medical Research Impacts
Who Decides? Rethinking Power and Practice in Research Ethics in and Beyond Myanmar
Ꮒꭶꮿꭲꮠ Ꭶꮪꭹ Ꮒꮸꮑꮝꮧ
Using local perspectives to inform the evaluation of data representation tools for place-based knowledge in coastal spatial planning in Nova Scotia, Canada
Blurring the lines
Community Development-Grounded and Led
A Review of the Quality Indicators of Rigor in Qualitative Research
Scoping studies
Indigenous research ethics and Tribal Research Review Boards in the United States
Animating the concept of “ethical space”
Bringing Ethics Review Home to Cowichan
Exploitation and community engagement
The Development of the Bronx Community Research Review Board
Expanding Ethics Review Processes to Include Community-Level Protections
Shifting practise
Understanding community-based participatory research through a social movement framework
Understanding Community-Based Processes for Research Ethics Review
Community-Based Review of Research Across Diverse Community Contexts
Building Community Participatory Research Coalitions from the Ground Up
The Challenge of Community Representation
Indigenous Research Ethics Requirements
Relationships between Community-Based Processes for Research Ethics Review and Institution-Based IRBs
What Can IRBs Learn From CABs? A Qualitative Analysis of the Experiences of Recruitment and Training of Nonscientist Members on Research Review Boards
Ethical Dilemmas in Community-Based Participatory Research
A 22-Year-Old Community Advisory Board
Administering Colonial Science
Scoping studies
Whose agenda is it? Regulating health research ethics in Labrador
Decolonizing Methodologies
| Citations per year | 5 |
|---|---|
| Citation span | 2025 - 2026 (2) |
| Highly cited | No |