- A Vision for “Ethics and Community Collaborations”
Ethics, community partnerships, research
In an editorial published soon after he assumed editorship of Progress in Community Health Partnerships (PCHP), Hal Strelnick shared his vision for the journal to explore “how an ethics framework built on equity and justice that includes ‘respect for community’ can be actualized”1 in community-academic research, service, and educational partnerships. As a bioethicist who has focused much of my scholarship on stakeholder engagement, I was thrilled to accept Dr. Strelnick’s invitation to be the inaugural editor for a new section exploring this question called “Ethics of Community Collaborations.”
I started thinking about the ethics of community-academic partnerships long before I had the vocabulary or any formal training in ethics. Before I began a career in bioethics, I was a student working on a Centers for Disease Control and Prevention-funded community-based participatory research (CBPR) project. CBPR wasn’t necessarily new then—although it was longer ago than I’d like to admit—but it was new on our campus and still emerging as a legitimate scholarly activity for academic researchers. We faced many challenges—adhering to traditional norms of scientific research while at the same time respecting community expertise; learning how to share power, resources, and decision-making responsibility; and negotiating the very different cultures, workstyles, priorities, and incentives of the university and the community-based organization. A literature addressing these challenges was beginning to emerge, but there were gaps in our collective understanding. At that time, I encountered many people who thought engagement simply was the answer, the solution to many of the ethical deficiencies in research—and who believed that any attempt at engagement was inherently good, naively unaware of the potential harms that could result from a variety of missteps. To be sure, the act of engaging stakeholders in any research, service, or educational project is a moral statement, a moral commitment. Engagement is an attempt to respond to the history of exploitation of underserved communities and the lack of control that people living in these communities have had over the decisions that impact their lives—and by extension the lack of control that people have over the programs, services, and medical treatments being offered to them. But good intentions of course do not mean that stakeholder engagement does not have unintended negative consequences, and engagement in any context certainly introduces unique ethical challenges.
As the premiere journal for scholarship on community-academic collaborations, PCHP should also be the epicenter of discussions about the ethics of stakeholder collaboration. While I was browsing—or rather clicking—through old issues of the journal, several themes emerged. (This was not a systematic review, and I apologize if I’ve missed anything.) I found attempts to articulate core ethical principles for community-academic partnerships,2 and a particular emphasize on building trust.3,4 Several articles suggest strategies for equitable partnerships, covering topics such as resource- and power-sharing,5–7 capacity building,8 equitable compensation for community partners,9 and sharing credit.10,11 A related set of articles focus on key partnership challenges,12–16 covering topics such as communication and conflict resolution, defining successful partnerships, and developing [End Page 273] tools to evaluate and improve partnerships. Articles published in PCHP also take up human research protections issues in the context of stakeholder-engaged research and cover community-level risks and benefits17; the notion of a principle of respect for communities18; training in human research protections for community research partners (a quite popular topic)19–25; and what I consider to be an emerging “hot topic” ripe for more investigation, community-based research review processes.26,27 Others discuss negotiating the requirements of traditional research with the principles of CBPR,28,29 or as Cené and colleagues so elegantly put it, “ensuring rigor while equitably sharing responsibility.”30
This list summarizes where we have been, and now I want to lay out where I would like to see us go. Of course, I would like to see increased submissions and publications in our journal around all of these themes related to the ethics of...