title: Institutional review board challenges related to community-based participatory research on human exposure to environmental toxins: a case study.
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.
authors.affiliation: Brown University, Department of Sociology and Center for Environmental Studies, Box 1916, Providence, RI 02912, USA.
authors.forename: Phil
authors.initials: P
authors.lastname: Brown
authors.forename: Rachel
authors.initials: R
authors.lastname: Morello-Frosch
authors.forename: J G
authors.initials: JG
authors.lastname: Brody
authors.forename: Rebecca Gasior
authors.initials: RG
authors.lastname: Altman
authors.forename: Ruthann A
authors.initials: RA
authors.lastname: Rudel
authors.forename: Laura
authors.initials: L
authors.lastname: Senier
authors.forename: Carla
authors.initials: C
authors.lastname: Pérez
authors.forename: Ruth
authors.initials: R
authors.lastname: Simpson
mesh_terms: D002140:California; D055812:Community-Based Participatory Research / Q000458:organization & administration; D004781:Environmental Exposure / Q000009:adverse effects / Q000032:analysis*; D028744:Ethics Committees, Research / Q000458:organization & administration*; D006801:Humans; D033181:Information Dissemination; D008404:Massachusetts