Protection of Participants in Community-Engaged Research by Institutional Review Boards: A Call for Action

The philosophical underpinnings of modern institutional review boards (IRBs) are based on traditional biomedical research models in which research is designed and conducted by experts, and human participants serve as potential sources of data.1 Traditional biomedical research differs from community-...

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Bibliographic Details
Published inAmerican journal of public health (1971) Vol. 114; no. S5; pp. S360 - S365
Main Authors Windsor, Liliane, Benoit, Ellen, Kwan, Patchareeya, Tan, Kevin, Richmond, Al
Format Journal Article
LanguageEnglish
Published United States American Public Health Association 01.05.2024
Subjects
Biomedical data
Biomedical research
Collaboration
Community
Community Health
Community power
Community-Based Participatory Research
COVID-19
COVID-19 diagnostic tests
Data collection
Ethics Committees, Research
Human subjects
Humans
Informed consent
Medical research
Opinions, Ideas, & Practice
Participatory research
Public health
Public Health Practice
Research Subjects
Researchers
Review boards
Statistics/Evaluation/Research
United States
United States
United States > US
Online AccessGet full text
ISSN0090-0036
1541-0048
1541-0048
DOI10.2105/AJPH.2024.307592

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Summary:The philosophical underpinnings of modern institutional review boards (IRBs) are based on traditional biomedical research models in which research is designed and conducted by experts, and human participants serve as potential sources of data.1 Traditional biomedical research differs from community-engaged research (CEnR), which is conducted collaboratively by academic and community partners who share power and jointly participate in all stages of the research process 2 Although CEnR has experienced substantial growth in the United States in recent decades, particularly in the public health arena, IRBs have failed to implement changes in human participant protections that recognize the unique principles and values inherent to CEnR. Not surprisingly, CEnR scholars and community partners have reported concerns to IRBs. Here we draw from the literature and from the experiences of several federally funded CEnR projects to identify challenges encountered at the IRB-CEnR interface and delineate actions to better align human participant protections with CEnR principles.
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CONTRIBUTORS
L. Windsor conceptualized the article, led the information collection, conducted the literature review, wrote the initial draft, and coordinated all aspects of the article. E. Benoit helped conceptualize the article, conducted the analysis of the discussion session, and helped edit the article. P. Kwan supported the conceptualization of the article, contributed to data collection, and developed the article’s second draft. K. Tan co-led the data collection and developed the article’s third draft. A. Richmond participated in the data collection and reviewed the final draft.
ISSN:0090-0036
1541-0048
1541-0048
DOI:10.2105/AJPH.2024.307592