ArticleAcademic medicine : journal of the Association of American Medical Colleges2012
Institutional review board community members: who are they, what do they do, and whom do they represent?
Article in Academic medicine : journal of the Association of American Medical Colleges, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 34 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
34 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Supporting public involvement in interview and other panels: a systematic review.Health expectations : an international journal of public participation in health care and health policy · 2017Pooled it
- Nonscientific Members of Institutional Review Boards.Asian bioethics review · 2025Article
- Acknowledging Complexity and Reimagining IRBs: A Reply to Discussions of the Protection-Inclusion Dilemma.The American journal of bioethics : AJOB · 2023Article
- Aligning clinical research ethics with community-engaged and participatory research in the United States.Frontiers in public health · 2023Review
- A Cross Sectional Survey of Recruitment Practices, Supports, and Perceived Roles for Unaffiliated and Non-scientist Members of IRBs.AJOB empirical bioethics · 2023Article
- Professional and academic profile of the Brazilian research ethics committees.BMC medical ethics · 2022Article
- "We're already doing this work": ethical research with community-based organizations.BMC medical research methodology · 2022Article
- Performance of IRBs in China: a survey on IRB employees and researchers' experiences and perceptions.BMC medical ethics · 2022Article
- Standards of evidence for institutional review board decision-making.Accountability in research · 2021Article
- Article
- Protocol and Researcher's Relationship with Institutional Review Board.African journal of biomedical research : AJBR · 2020Article
- Disability, Ethics, and Health Care in the COVID-19 Pandemic.American journal of public health · 2020Article
- Article
- How Single Institutional Review Boards Manage Their Own Conflicts of Interest: Findings From a National Interview Study.Academic medicine : journal of the Association of American Medical Colleges · 2019Article
- Open Humans: A platform for participant-centered research and personal data exploration.GigaScience · 2019Review
- Perspectives of non-specialists on the potential to serve as ethics committee members.The Journal of international medical research · 2019Article
- Establishing Consumer Protections for Research in Human Service Agencies.Behavior analysis in practice · 2018Article
- Impediments to communication and relationships between infertility care providers and patients.BMC women's health · 2018Article
- The Precision Medicine Nation.The Hastings Center report · 2017Article
- Patient-centred outcomes research: brave new world meets old institutional policies.Family practice · 2017Article
Corrections and comments
- Commented on by
Authors and funding
1 author.
Funding
Abstract
purposeThe roles of nonaffiliated and nonscientific institutional review board (IRB) members at academic medical centers have received some attention, but questions remain-Who are they, what do they do, and whom, if anyone, do they represent?
methodThe author interviewed 46 IRB chairs, directors, administrators, and members in 2007-2009. He contacted the leadership of 60 IRBs (every fourth one in the list of the top 240 institutions by National Institutes of Health funding), interviewed IRB leaders from 34 of these institutions, then recruited 7 additional members from these IRBs to interview.
resultsRegular IRB members often called these individuals community members and were confused as to who these members were, or should be, and whether they did, or should, represent anyone and, if so, whom. IRBs encountered challenges in finding, training, and retaining these community members. Tensions emerged because nonscientific members, by definition, have no scientific training, so they have difficulty understanding key aspects of protocols, making them feel unempowered to contribute to reviews. IRBs varied in how much they encouraged these members to participate, in what ways, and with what success.
conclusionsAt academic medical centers, IRBs struggled with how to view, choose, employ, and retain nonaffiliated and nonscientific members, and they varied widely in these regards. Some IRBs had these members review entire protocols, others only limited parts (particularly reading consent forms for comprehension), pro forma. Yet, at times, these members' input proved very important. These findings have critical implications for policy, practice, and research.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.