Abstract
BackgroundWe report on the challenges of obtaining Institutional Review Board (IRB) coverage for a community-based participatory research (CBPR) environmental justice project, which involved reporting biomonitoring and household exposure results to participants, and included lay participation in research.MethodsWe draw on our experiences guiding a multi-partner CBPR project through university and state Institutional Review Board reviews, and other CBPR colleagues' written accounts and conference presentations and discussions. We also interviewed academics involved in CBPR to learn of their challenges with Institutional Review Boards.ResultsWe found that Institutional Review Boards are generally unfamiliar with CBPR, reluctant to oversee community partners, and resistant to ongoing researcher-participant interaction. Institutional Review Boards sometimes unintentionally violate the very principles of beneficence and justice which they are supposed to uphold. For example, some Institutional Review Boards refuse to allow report-back of individual data to participants, which contradicts the CBPR principles that guide a growing number of projects. This causes significant delays and may divert research and dissemination efforts. Our extensive education of our university Institutional Review Board convinced them to provide human subjects protection coverage for two community-based organizations in our partnership.ConclusionsIRBs and funders should develop clear, routine review guidelines that respect the unique qualities of CBPR, while researchers and community partners can educate IRB staff and board members about the objectives, ethical frameworks, and research methods of CBPR. These strategies can better protect research participants from the harm of unnecessary delays and exclusion from the research process, while facilitating the ethical communication of study results to participants and communities.
Highlights
We report on the challenges of obtaining Institutional Review Board (IRB) coverage for a communitybased participatory research (CBPR) environmental justice project, which involved reporting biomonitoring and household exposure results to participants, and included lay participation in research
The differing assumptions that CBPR researchers and IRBs bring to the process come into sharpest relief regarding IRB’s opposition to two particular CBPR practices: (1) layperson participation in the research process and (2) the report-back of individual results to study participants
The CBPR practice of report-back, and especially the philosophy of openness that informs it, challenges IRB assumptions about who controls the flow of data produced in human subjects research, when and whether those data should be made available to members of an affected community, and what the nature and duration of the researcher-subject relationship should be
Summary
We report on the challenges of obtaining Institutional Review Board (IRB) coverage for a communitybased participatory research (CBPR) environmental justice project, which involved reporting biomonitoring and household exposure results to participants, and included lay participation in research. In 1979 the Belmont Report established principles for the use of human subjects in scientific research. Developed partly in response to the Tuskegee syphilis study, Belmont identified three basic principles governing the ethical use of human research subjects. The second principle, “beneficence,” called on researchers to “do no harm” or barring that, to maximize the benefits of their research while reducing as much as possible the risk to the subject. The principle of “justice” required careful attention to the fair distribution of risks and benefits, calling on researchers to select subjects only “for reasons directly related to the problem being studied” and to vigilantly avoid the selection of subjects for “their easy availability, their compromised position, or their manipulability.”. Justice required that those who bear the risks of research should, whenever possible, be among the first to benefit from its insights [1] The principle of “justice” required careful attention to the fair distribution of risks and benefits, calling on researchers to select subjects only “for reasons directly related to the problem being studied” and to vigilantly avoid the selection of subjects for “their easy availability, their compromised position, or their manipulability.” Justice required that those who bear the risks of research should, whenever possible, be among the first to benefit from its insights [1]
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