by Kaye Edwards, Associate Professor of Independent College Programs at Haverford College
On September 27, I attended the PRIM&R webinar titled Community Engagement in International Research: Considerations for Ethics Review with Jim Lavery, MSc, PhD, and Katherine King, PhD. As a new member of PRIM&R and a former institutional review board (IRB) member at my institution, Haverford College, I found the webinar to be relevant and thought-provoking.
In their role of protecting human subjects in research, institutional review boards (IRBs) tend to focus on informed consent of individual participants, but Lavery and King encouraged us to consider not just individuals who directly participate in a study, but the broader community that may be affected by the research or interventions. Lavery and King draw on the report by the Presidential Commission for the Study of Bioethical Issues, Research Across Borders: Proceedings of the International Research Panel of the Presidential Commission for the Study of Bioethical Issues, which calls for researchers to “demonstrate respect for human subjects and their communities in all phases of clinical trial design and implementation. Recognizing other cultural standards and practices through community engagement is one concrete means of showing respect.”
In their webinar, I heard a call to move from our current framework of securing individual consent to the larger and inherently political process of seeking consensus, in order to respect the voices of different, relevant interest holders within a community. In their nuanced and multi-layered presentation, Lavery and King espoused a new perspective on community engagement and offered guidelines for demonstrating respect through the formation of ongoing relationships to help reduce the risks, balance the benefits, and enhance the legitimacy of the research program. They also argued that community engagement in global health research “is about seeking and facilitating aggregate agreement from the collection of layers of authority within the ‘relevant community.’”
While I support their overall framework, I see much work yet to be done. As a faculty member who teaches courses in global health justice and in gender and sexuality studies, and as a biomedical researcher who is embarking on a new collaboration to prevent cervical cancer in Central America, I am concerned about the on-the-ground realities of negotiating the different layers of authority. While respect for communities is essential for researchers working across borders, what happens if women's voices and/or health are not respected or valued within a given community? How do we respond when women don’t have the political space to voice their concerns or to help shape the community’s consensus about projects that may improve their health?
I hope that feminist ethicists, anthropologists, and others will share their insights and experiences as to how researchers can respectfully engage with communities, while not compromising women’s basic human right to health. Please join in the discussion.