Are We Asking the Right Questions? A Review of Canadian REB Practices in Relation to Community-Based Participatory Research

Abstract

Access barriers to effective ethics review continue to be a significant challenge for researchers and community-based organizations undertaking community-based participatory research (CBPR). This article reports on findings from a content analysis of select (Behavioural, Biomedical, Social Sciences, Humanities) research ethics boards (REBs) in the Canadian research context (n = 86). Existing ethics review documentation was evaluated using 30 CBPR related criteria for their sensitivity to relevant approaches, processes, and outcomes. A linear regression was conducted to determine whether specific organizational characteristics have an impact on the CBPR sensitivity: (1) region of Canada, (2) type of institution (university or a healthcare organization), (3) primary institutional language (English or French) and (4) national ranking with respect to research intensiveness. While only research intensiveness proved statistically significant (p = .001), we recognize REB protocol forms may not actually reflect how CBPR is reviewed. Despite using a single guiding ethical framework, REBs across Canada employ a variety of techniques to review research studies. We report on these differences and varying levels of sensitivity to CBPR. Finally, we highlight best practices and make recommendations for integrating CBPR principles into existing ethics review.

Laying the Groundwork: A Practical Guide for Ethical Research with Indigenous Communities

“…Second, individual members of university-based REBs do not consistently interpret and apply the guidelines discussed above when they are reviewing researchers' project proposals (Castleden, Morgan, & Lamb, 2012;Flicker & Worthington, 2012;Guta, Nixon, & Wilson, 2013;Guta et al, 2010). This inconsistency has resulted in REBs acting as a barrier, rather than a support, to researchers conducting ethical community-based research with Indigenous communities (Stiegman & Castleden, 2015).…”

Research Ethics Education for Community-Engaged Research: A Review and Research Agenda

“…This means that many IRB staff and members are not familiar with the particularities of CEnR. This lack of familiarity creates challenges for investigators in presenting their work to IRBs as well as deficits in IRB review of CEnR projects (Flicker et al, 2007; Guta et al, 2010; Khanlou & Peter, 2005; Malone et al, 2006; Shore, 2007; Wolf, 2010). For example, a misunderstanding of CEnR may lead an IRB to harbor misgivings about the competencies of community partners and therefore require “more” rather than “more relevant” training (Dolor, Smith, & Neale, 2008; Yawn et al, 2009).…”

From Subject to Participant: Ethics and the Evolving Role of Community in Health Research

“…Participants may “wear ‘multiple hats’…(e.g., investigator, advocate, volunteer, board member, etc. )” 25, p.40 or shift roles over time. Participants might provide data but also advise, share expertise, advocate for the study, or analyze data.…”

“…24 Institutional Review Boards (IRBs) assess whether subjects are adequately protected and insist upon extra protections for those from vulnerable groups who may experience unusual constraints on voluntary decision-making or who may be less likely to receive the research benefits. 25 …”