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Open Access Highly Accessed Case report

Institutional review board challenges related to community-based participatory research on human exposure to environmental toxins: A case study

Phil Brown1, Rachel Morello-Frosch2*, J G Brody3, Rebecca Gasior Altman4, Ruthann A Rudel3, Laura Senier5, Carla Pérez6 and Ruth Simpson7

Author Affiliations

1 Brown University, Department of Sociology and Center for Environmental Studies, Box 1916, Providence RI 02912, USA

2 University of California, Berkeley School of Public Health and Department of Environmental Science, Policy and Management, 137 Mulford Hall, Berkeley CA 94720-3114, USA

3 Silent Spring Institute, 29 Crafts Street, Newton MA 02458, USA

4 Tufts University Department of Community Health, 112 Packard Ave., Medford MA 02555, USA

5 University of Wisconsin Department of Family Medicine and Department of Rural Sociology, 1450 Linden Drive Madison, WI 53706-1522, USA

6 Communities for a Better Environment, 1904 Franklin Street, Suite 600, Oakland CA 94612, USA

7 Bryn Mawr College, Department of Sociology, 101 North Merion Avenue Bryn Mawr PA 19010-2899, USA

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Environmental Health 2010, 9:39  doi:10.1186/1476-069X-9-39

Published: 16 July 2010

Abstract

Background

We 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.

Methods

We 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.

Results

We 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.

Conclusions

IRBs 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.