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Cultivating Participant Relationships: The Ideal of Partnership and the Reality of Minority Communities’ Participation in Biomedical Research

  • Author(s): Kauffman, Vanessa Madden
  • Advisor(s): Polletta, Francesca
  • et al.
Abstract

Despite federal guidelines prioritizing the inclusion of minorities in clinical research, experts still struggle with how to convince people from underrepresented communities to volunteer in essential research. Motivated by ethical concerns and pragmatism, partnering with local communities is championed by recruitment experts as an effective strategy to address cultural and structural barriers to participation and encourage research enrollment among underrepresented racial and ethnic minority groups. In this study, I investigate how partnership, a key term in participatory research approaches, which emphasize the greater involvement of local people, is understood and enacted by biomedical researchers and ordinary people. I use qualitative methods to investigate how researchers’ efforts to engender trust through partnerships with minority communities are experienced in practice by the people they aim to recruit. My analysis is drawn from 30 interviews with health researchers, a content analysis of public documents from a biomedical initiative using partnered approaches, and focus groups and interviews with 60 Latinx residents of Greater Los Angeles, California. I show that although partnering with local communities is a common method for involving minority groups in research, partnerships are enacted and understood by researchers in varying and distinct ways, with partnership ideals often challenging to carry out. In all models of partnership, researchers assume that these relationships promote trust and encourage ordinary people to frame research participation as a form of civic engagement and social solidarity. However, this is rarely how vulnerable people frame research or why they volunteer. More often, I found that people do not draw a clear distinction between research and healthcare, with medical care experiences intimately connected to people’s attitudes toward biomedical research. Community residents saw “participant partnerships” as confusing and tokenism to feign equality where it did not exist. Researchers and residents had drastically different understandings about what their obligations and entitlements were vis a vis each other, leading to conflicting relationship expectations and different symbolic valuations of monetary incentives. I conclude that increasing the participation of underrepresented groups in biomedical research depends on recognizing the different ways that people think about and act on relationships within the U.S. health care system.

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