Introduction to Special Issue: Advancing the Ethics of Community-Based Participatory Research

Abstract

Increasingly communities are engaging in community-based participatory research (CBPR) to address their pressing health concerns, frequently in partnership with institutions. CBPR with its underlying values challenges us to expand the traditional framework of ethical analysis to include community-level and partnership-oriented considerations. This special issue considers ethical considerations inherent in CBPR, presents examples of how communities have created their own processes for research ethics review, and identifies challenges CBPR teams may encounter with institution-based research ethics committees. Drawing upon the special issue articles and the work conducted by Community-Campus Partnerships for Health and the Tuskegee University National Center for Bioethics in Research and Health Care, we propose an approach and a set of strategies to create a system of research ethics review that more fully accounts for individual and community-level considerations.

Ethics and Science in the Participatory Era: A Vignette-Based Delphi Study

“…Finally, Banks and colleagues emphasize the importance of researchers’ personal attributes, describing “ethics as embodied in researchers … with a scope that includes the nature of relationships and qualities of character (such as trust-worthiness and integrity)” (Banks et al, 2013, p. 275). Other scholars studying participatory teams have identified the importance to ethical decision-making of the relational climate on a study team – for example, the fostering of trust (Jagosh et al, 2015; Khodyakov et al, 2016) and respectful relationships (Shore et al, 2008) as well as norms of collaboration and power sharing (Mikesell, Bromley, & Khodyakov, 2013). While science studies scholars have long argued that interpersonal and emotional aspects of day-to-day science shape researchers’ ethical choices (Cohn, 2008; Pickersgill, 2012; Svendsen & Koch, 2008; Wainwright, Williams, Michael, Farsides, & Cribb, 2006), the wider adoption of participatory research approaches may heighten attention to the social and emotional work required for knowledge production.…”

“…This has had ethical implications, including but not limited to reformulations of informed consent (Skinner et al, 2015) and the foregrounding of issues like trust, transparency, and bidirectional learning in concepts of ethics (Khodyakov, Mikesell, Booth, Schraiber, & Bromley, 2016). When confronted with ethical dilemmas, participatory researchers say that research ethics “can be practically applied by building relationships, following participatory processes, developing locally relevant principles/codes of ethics,” and above all through “the centrality of trusting and respectful relationships between community members and researchers,” (Shore, Wong, Seifer, Grignon, & Northington Gamble, 2008, p. 2) or what Banks and colleagues (Banks et al, 2013) call “relationship-based” ethics.…”

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

“…Community engagement in research can take numerous forms, from limited advisory roles in early stages (e.g., input on research priorities) to key leadership responsibilities at every stage, as in community-based participatory research (CBPR). 10-13 Consensus-building activities, shared control of data, and long-term partnerships can be key elements of community-engaged projects. These research approaches reflect the growing prominence of patient-advocacy groups and the concept of participatory science.…”

“…” 10, p.1 Community-engaged investigators prefer the participant role because it “[i]ncreases the possibility of overcoming the understandable distrust of research on the part of communities that have historically been the ‘subjects’ of such research.” 26, p.181 To community-engaged investigators, words like “subject” and “researcher” can signal exploitation rather than ethical protection because the subject role is seen to require passive acquiescence to others' agendas. 27,28 Community-engaged investigators also eschew the sharp distinction between subject and researcher and seek to minimize the distance between community and academic participants through the mutual exchange of knowledge and skills.…”

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

“…A lthough formal ethics review remains an important requirement of academic institutions and funding agencies, it continues to be at odds with methods in community-based participatory research (CBPR) (Boser, 2007;Flicker et al, 2009;Rolfe, 2005;Shore, 2007;Shore et al, 2008). CBPR differs from traditional forms of research through its commitment to social action, relationship building, and collaborative data collection and analysis techniques (Flicker et al, 2010;Trussler, Perchal, & Barker, 2000).…”