Author:
Brown Phil,Morello-Frosch Rachel,Brody J G,Altman Rebecca Gasior,Rudel Ruthann A,Senier Laura,Pérez Carla,Simpson Ruth
Abstract
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.
Publisher
Springer Science and Business Media LLC
Subject
Health, Toxicology and Mutagenesis,Public Health, Environmental and Occupational Health
Reference35 articles.
1. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research: The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. Edited by: National Institutes of Health. 1979, Bethesda MD: Office of Human Subjects Research
2. Brody JG, Morello-Frosch R, Brown P, Rudel RA, Altman RG, Frye M, Osimo CC, Perez C, Seryak LM: Is it safe? New ethics for reporting personal exposures to environmental chemicals. Am J Public Health. 2007, 97: 1547-1554. 10.2105/AJPH.2006.094813.
3. McCormick S, Brown P, Zavestoski S: The personal is scientific the scientific is political: the environmental breast cancer movement. Sociological Forum. 2003, 18: 545-576. 10.1023/B:SOFO.0000003003.00251.2f.
4. Morello-Frosch R, Pastor M, Sadd J, Porras C, Prichard M: Citizens, science and data judo: leveraging community-based participatory research to build a regional collaborative for environmental justice in southern California. Methods for Conducting Community-Based Participatory Research in Public Health. Edited by: Israel BA, Eng E, Schulz AJ, Parker EA. 2005, Jossey-Bass, CA USA, 371-391.
5. Shepard PM, Northridge ME, Prakash S, Stover G: Preface: Advancing environmental justice through community-based participatory action research. Environ Health Perspect. 2002, 110 (2): 139-144. 10.1289/ehp.02110139.
Cited by
67 articles.
订阅此论文施引文献
订阅此论文施引文献，注册后可以免费订阅5篇论文的施引文献，订阅后可以查看论文全部施引文献