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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.
Key words: Research participation, mistrust, African Americans, recruitment.
Despite mandates by the federal government to ensure inclusion of women and minorities in all federally funded research,1 African Americans continue to participate less frequently than Whites. Lower participation rates among African Americans have been reported across various study types (e.g., controlled clinical treatment trials,2,3 intervention trials,4,5 as well as studies on various disease conditions, including AIDS,6-8 Alzheimer's disease,9 prostate cancer and other malignancies,10-14 stroke,15 and cardiovascular disease16).
Several factors that affect the participation of African Americans in studies have been identified17,18 including elements of study design,19-21 logistical problems, low levels of health literacy, sociocultural factors, and specific attitudes that hinder research participation.17 Mistrust of academic and research institutions and investigators is the most significant attitudinal barrier to research participation reported by African Americans.8,17,22-29 Its etiology stems from historic events, but is also exacerbated by more current actions,30-34 including socioeconomic and healthcare system inequities.35,36
From a historical perspective, the Tuskegee syphilis study is widely recognized as a reason for mistrust because of the extent and duration of deception and mistreatment and the study's impact on human subject review and approval.37-39 However, the history of medical and research abuse of African Americans goes well beyond Tuskegee. Harriet Washington eloquently describes the history of medical experimentation and abuse,40 demonstrating that mistrust of medical research and the health care infrastructure is...