More than Tuskegee: Understanding Mistrust about Research Participation
By D. Scharff, K. Mathews, Pamela Jackson, Jonathan Hoffsuemmer, Emeobong Martin, Dorothy F. Edwards. Journal of health care for the poor and underserved, 2010
1,026 citations recorded by the source corpus.
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.
Subfields: General Health Professions, Public Health, Environmental and Occupational Health
View Paper: https://www.semanticscholar.org/paper/b875a9b4d118ed7eb964837b87356ea29cb31aad
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In Public Health, Environmental and Occupational Health
Citations in the corpus
- Does Diversity Matter for Health? Experimental Evidence from Oakland (2018, positive): “It also reflects many findings from the medical literature which suggest that African-Americans are wary of participating in clinical trials and part of this hesitation may be related to Tuskegee (Murthy, Krumholz, Gross 2004; Braunstein et al. 2008; Scharff et al. 2010).”