More than Tuskegee: Understanding Mistrust about Research Participation

Abstract

This paper describes results of a qualitative study that explored barriers to research participation among African American adults. A purposive sampling strategy was used to identify African American adults with and without previous research experience. A total of 11 focus groups were conducted. Groups ranged in size from 4–10 participants (N = 70). Mistrust of the health care system emerged as a primary barrier to participation in medical research among participants in our study. Mistrust stems from historical events including the Tuskegee syphilis study and is reinforced by health system issues and discriminatory events that continue to this day. Mistrust was an important barrier expressed across all groups regardless of prior research participation or socioeconomic status. This study illustrates the multifaceted nature of mistrust, and suggests that mistrust remains an important barrier to research participation. Researchers should incorporate strategies to reduce mistrust and thereby increase participation among African Americans.

A paradigm for understanding trust and mistrust in medical research: The Community VOICES study

“…Discrimination against the Latino community, with its own unique historical experiences, is well described (Moreno-Jones 2004); in our survey Perceptions of Discrimination were also voiced by Latino respondents, an effect seen most strongly among those who chose to be interviewed in Spanish. Not just a historical memory or part of an extensive oral history, for many members of minority communities, their lived experience with the current healthcare system reinforces perceptions of injustice and discrimination on a daily basis (Brandon et al 2005; Corbie-Smith et al 2007; Moreno-Jones et al 2004; Scharf et al 2010). These results also highlight the importance of not over-simplifying the effect of race/ethnicity on trust, especially by erroneously grouping all racial/ethnic minorities together.…”

Finding the Hidden Participant

“…Meaningful relationships with the community being researched are long-term relationships (Scharff et al, 2010;Shedlin et al, 2011). For example, the third author spent several months prior to recruitment giving presentations about the research and its implications to stakeholders.…”

House Chats as a Grassroots Engagement Methodology in Community-Based Participatory Research: The WE Project, Petersburg

“…1,2 Building trust and being able to reach communities and groups most affected by the health issue of concern remains a major challenge for all those interested in reducing health disparities. 34 Building trust through engaging laypersons from the community as community researchers have the potential to be highly effective in reaching individuals 5 who may not otherwise be willing to participate in traditional methods of research. Laypersons, in the role of community or peer researcher, have been engaged in various CBPR studies with great success.…”