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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| Published in | American journal of public health (1971) Vol. 114; no. S5; pp. S360 - S365 |
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| Main Authors | , , , , |
| Format | Journal Article |
| Language | English |
| Published |
United States
American Public Health Association
01.05.2024
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| Subjects | |
| Online Access | Get full text |
| ISSN | 0090-0036 1541-0048 1541-0048 |
| DOI | 10.2105/AJPH.2024.307592 |
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| Abstract | 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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| AbstractList | 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. |
| Author | Tan, Kevin Benoit, Ellen Windsor, Liliane Richmond, Al Kwan, Patchareeya |
| Author_xml | – sequence: 1 givenname: Liliane surname: Windsor fullname: Windsor, Liliane organization: Liliane Windsor and Kevin Tan are with the School of Social Work, University of Illinois Urbana-Champaign, Urbana, IL. Ellen Benoit is with the North Jersey Community Research Initiative, Newark, NJ. Patchareeya Kwan is with the Department of Health Sciences, California State University, Northridge. Al Richmond is with Community-Campus Partnerships for Health, Raleigh, NC – sequence: 2 givenname: Ellen surname: Benoit fullname: Benoit, Ellen organization: Liliane Windsor and Kevin Tan are with the School of Social Work, University of Illinois Urbana-Champaign, Urbana, IL. Ellen Benoit is with the North Jersey Community Research Initiative, Newark, NJ. Patchareeya Kwan is with the Department of Health Sciences, California State University, Northridge. Al Richmond is with Community-Campus Partnerships for Health, Raleigh, NC – sequence: 3 givenname: Patchareeya surname: Kwan fullname: Kwan, Patchareeya organization: Liliane Windsor and Kevin Tan are with the School of Social Work, University of Illinois Urbana-Champaign, Urbana, IL. Ellen Benoit is with the North Jersey Community Research Initiative, Newark, NJ. Patchareeya Kwan is with the Department of Health Sciences, California State University, Northridge. Al Richmond is with Community-Campus Partnerships for Health, Raleigh, NC – sequence: 4 givenname: Kevin surname: Tan fullname: Tan, Kevin organization: Liliane Windsor and Kevin Tan are with the School of Social Work, University of Illinois Urbana-Champaign, Urbana, IL. Ellen Benoit is with the North Jersey Community Research Initiative, Newark, NJ. Patchareeya Kwan is with the Department of Health Sciences, California State University, Northridge. Al Richmond is with Community-Campus Partnerships for Health, Raleigh, NC – sequence: 5 givenname: Al surname: Richmond fullname: Richmond, Al organization: Liliane Windsor and Kevin Tan are with the School of Social Work, University of Illinois Urbana-Champaign, Urbana, IL. Ellen Benoit is with the North Jersey Community Research Initiative, Newark, NJ. Patchareeya Kwan is with the Department of Health Sciences, California State University, Northridge. Al Richmond is with Community-Campus Partnerships for Health, Raleigh, NC |
| BackLink | https://www.ncbi.nlm.nih.gov/pubmed/38547467$$D View this record in MEDLINE/PubMed |
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| Cites_doi | 10.1111/1468-0009.12184 10.2105/AJPH.2007.113571 10.1177/1556264615615008 10.1111/hsc.12562 10.1007/s11524-007-9165-7 10.2105/AJPH.2014.302403 10.2105/AJPH.2022.307105 10.1007/s11524-006-9110-1 10.1146/annurev.publhealth.19.1.173 10.1002/ncp.10623 10.1525/jer.2012.7.1.17 10.1080/21582041.2013.769618 |
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| Notes | SourceType-Scholarly Journals-1 ObjectType-Commentary-1 content type line 14 content type line 23 ObjectType-Editorial-2 ObjectType-Article-3 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. |
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| SubjectTerms | 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 |
| Title | Protection of Participants in Community-Engaged Research by Institutional Review Boards: A Call for Action |
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