A case study of community-based participatory research ethics: The healthy public housing initiative

Abstract

We conducted and analyzed qualitative interviews with 12 persons working on the Healthy Public Housing Initiative in Boston, Massachusetts in 2001. Our goal was to generate ideas and themes related to the ethics of the community-based participatory research in which they were engaged. Specifically, we wanted to see if we found themes that differed from conventional research that is based on an individualistic ethics. There were clearly distinct ethical issues raised with respect to projects and individuals who engage in community-based collaborations. The differences that arose from the interviews were seeking equality between the partners, the need for the community partner to defend the community, dealing with unflattering data, meeting community expectations and producing tangible benefits to the community.

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

“…[40][41][42][43][44][45][46][47][48] For instance, in creating a community-based advisory committee, a CBPR team may inadvertently cause conflict between community members. 42,44,46 It is often difficult to find appropriate Bcommunity representatives^who will advocate on behalf of general community concerns. 21,49,50 Sometimes it may be important to obtain consent at a Bcommunity^level from respected or elected community leaders.…”

“…44,52,53 Despite ethical strictures to avoid creating coercive economic conditions (e.g., offering honoraria so high that economically disadvantaged persons may feel obliged to participate), it is also important to value and compensate all community members on a collaborative team for their time. Given the time and effort expended by community members on such teams, there may be an ethical imperative to ensure that equitable (or at the very least adequate) compensation exists for all team members.…”

“…Research partners may find themselves having to ask Bat what point do the needs of the many outweigh those of the few?F inally, ethical issues may arise in relation to disseminating or releasing sensitive or potentially unflattering data. 40,42,44,45,48,51 Academic partners may feel an imperative to publish and to Bstay true^to the Bobjective^nature of the data. Community members, however, may fear that unflattering data may (further) stigmatize their communities.…”

Rethinking Research Ethics for Latinos: The Policy Paradox of Health Reform and the Role of Social Justice

“…However, studies on the effective recruitment and retention of minority research participants have offered several tactics: minimize the "outsider-insider" gap by increasing the cultural and racial concordance between investigators and the community (Yancey, Ortega, & Kumanyika, 2006); start with the use of small pilots to help establish relationships based on mutual respect and trust (Brugge & Kole, 2003); offer communities more intensive support and contact even before recruitment and go beyond the scope of the study through the use of promotores de salud or lay outreach and health workers (Yancey et al, 2006); help individual researchers, community partners, and participants interpret research findings and help them learn how to use those findings to further benefit the community.…”

Teaching Science, Technology, and Society to Engineering Students: A Sixteen Year Journey

“…Here deeper learning refers not only to a greater level of penetration, assimilation, and connectedness, but also to learning with a subjective component, which goes beyond the objective learning of facts, concepts, ideas, and skills. Being creative, making choices, taking individual and collaborative action, and reflecting upon the local and global consequences of ones actions are important components of this process whose learning benefits have been recognized (IB Organization 2011;Brugge and Kole 2003). Community research projects have the potential to combine these components of learning with the application of technical knowhow to solve real-life problems, and can provide an excellent opportunity for deep learning.…”