More than Tuskegee: Understanding Mistrust about Research Participation

More than Tuskegee: Understanding Mistrust about Research Participation

2010 August ; 21(3): 879–897 | Darcell P. Scharff, PhD, Katherine J. Mathews, MD, MPH, MBA, Pamela Jackson, MA, RN, Jonathan Hoffsuemmer, MPH, Emeobong Martin, MPH, and Dorothy Edwards, PhD
This paper presents the findings of a qualitative study that explores barriers to research participation among African American adults. The study used purposive sampling to identify participants with and without previous research experience, conducting 11 focus groups with a total of 70 participants. Mistrust of the healthcare system emerged as a primary barrier to participation, stemming from historical events such as the Tuskegee syphilis study and ongoing healthcare system issues. This mistrust was consistent across all groups, regardless of socioeconomic status or prior research experience. The study highlights the multifaceted nature of mistrust and suggests that it remains a significant barrier to research participation. Researchers are advised to incorporate strategies to reduce mistrust and increase participation among African Americans. The study also discusses the impact of historical and current events on participants' attitudes, the lack of perceived benefits to the African American community from research, and the importance of community engagement and culturally competent communication in improving trust and participation.This paper presents the findings of a qualitative study that explores barriers to research participation among African American adults. The study used purposive sampling to identify participants with and without previous research experience, conducting 11 focus groups with a total of 70 participants. Mistrust of the healthcare system emerged as a primary barrier to participation, stemming from historical events such as the Tuskegee syphilis study and ongoing healthcare system issues. This mistrust was consistent across all groups, regardless of socioeconomic status or prior research experience. The study highlights the multifaceted nature of mistrust and suggests that it remains a significant barrier to research participation. Researchers are advised to incorporate strategies to reduce mistrust and increase participation among African Americans. The study also discusses the impact of historical and current events on participants' attitudes, the lack of perceived benefits to the African American community from research, and the importance of community engagement and culturally competent communication in improving trust and participation.
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