Ethical Dilemmas in Community-Based Participatory Research: Recommendations for Institutional Review Boards

Abstract

National and international codes of research conduct have been established in most industrialized nations to ensure greater adherence to ethical research practices. Despite these safeguards, however, traditional research approaches often continue to stigmatize marginalized and vulnerable communities. Community-based participatory research (CBPR) has evolved as an effective new research paradigm that attempts to make research a more inclusive and democratic process by fostering the development of partnerships between communities and academics to address community-relevant research priorities. As such, it attempts to redress ethical concerns that have emerged out of more traditional paradigms. Nevertheless, new and emerging ethical dilemmas are commonly associated with CBPR and are rarely addressed in traditional ethical reviews. We conducted a content analysis of forms and guidelines commonly used by institutional review boards (IRBs) in the USA and research ethics boards (REBs) in Canada. Our intent was to see if the forms used by boards reflected common CBPR experience. We drew our sample from affiliated members of the US-based Association of Schools of Public Health and from Canadian universities that offered graduate public health training. This convenience sample (n = 30) was garnered from programs where application forms were available online for download between July and August, 2004. Results show that ethical review forms and guidelines overwhelmingly operate within a biomedical framework that rarely takes into account common CBPR experience. They are primarily focused on the principle of assessing risk to individuals and not to communities and continue to perpetuate the notion that the domain of "knowledge production" is the sole right of academic researchers. Consequently, IRBs and REBs may be unintentionally placing communities at risk by continuing to use procedures inappropriate or unsuitable for CBPR. IRB/REB procedures require a new framework more suitable for CBPR, and we propose alternative questions and procedures that may be utilized when assessing the ethical appropriateness of CBPR.

Studying and Addressing Urban Immigrant Restaurant Worker Health and Safety in San Francisco’s Chinatown District: A CBPR Case Study

“…24 Conversely, findings may emerge which could cast the community in an unfavorable light which community partners do not want to have "go public". 41 As others have described, 18,24,[42][43][44] continued dialogue and MOUs may be helpful in anticipating such "what ifs" and deciding on ways to deal with them early on. Such methods are not likely to preclude all unanticipated issues from arising which require the utmost care as they are addressed.…”

Developing the Field Site Concept for the Study of Cultural Evolution

“…The first is a point raised by traditional social and cultural anthropologists, that empirically-minded researchers occasionally seek to extract data from a field site a) without being willing to put the necessary time into understanding the local context and b) with little thought of 'giving back' to the community, except maybe through acknowledgements in papers that most of their participants will never read. The unofficial term for this is "helicopter research" because it involves parachuting in and then quickly departing from a research site (see Flicker et al 2007). This is a serious issue and is one of the reasons that attempting to develop genuine collaborations with anthropologists and other experts who engage in long-term research is essential for those who may be new to 'field site' based research and do not have contacts with a targeted community/area.…”

Expanding Ethics Review Processes to Include Community-Level Protections: A Case Study from Flint, Michigan

“…IRBs are often housed within academic institutions or community institutions, such as hospitals [15], but some IRBs are corporate entities. In either case, community considerations are often missing from IRB deliberations [16,17], although IRBs are federally required to have community members and consider community concerns, according to Title 21 of the Code of Federal Regulations (CFR) [18]. Some IRBs do not fully assess community protections, consent, risks, or benefits, restricting their main focus to individual protections [16], and thus failing to incorporate another important ethical principle, respect for communities [19].…”