Journal of General Internal Medicine

, Volume 14, Issue 9, pp 537–546 | Cite as

Attitudes and beliefs of african americans toward participation in medical research

  • Giselle Corbie-Smith
  • Stephen B. Thomas
  • Mark V. Williams
  • Sandra Moody-Ayers
Original Articles


OBJECTIVE: To describe barriers to participation of African Americans in research.

DESIGN: Focus group interviews conducted in 1997.

PATIENTS: Thirty-three African-American adults presenting to an urban public hospital for outpatient medical care participated in one of five focus groups.

MEASUREMENTS AND MAIN RESULTS: African-American patients’ attitudes toward medical research were measured. Mistrust of doctors, scientists, and the government was reported consistently by the participants. Many participants described concerns about the ethical conduct of clinicians and investigators when poor or minority patients are involved and cited examples of exploitation as supporting evidence for their mistrust of the medical establishment. While participants were clear about the violation of human rights in the Tuskegee Syphilis Study, all were misinformed of the historical facts of the study. Few participants understood the concept of informed consent. Participants saw signing the document as relinquishing their autonomy and as a legal protection for physicians. Despite these concerns, participants gave recommendations to improve minority participation in research.

CONCLUSIONS: African-American participants in this study described distrust of the medical community as a prominent barrier to participation in clinical research. Participants described real and perceived examples of exploitation to support their distrust of researchers. The goal of the consent process, to inform patients of risks and benefits so as to facilitate self-determination, was misinterpreted by these participants. Understanding the importance of interpersonal trust within the clinical relationship may prove to be a significant factor in enhancing participation in clinical trials.

Key words

African American research participation trust informed consent 


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Copyright information

© Society of General Internal Medicine 1999

Authors and Affiliations

  • Giselle Corbie-Smith
    • 1
  • Stephen B. Thomas
    • 2
  • Mark V. Williams
    • 1
  • Sandra Moody-Ayers
    • 3
  1. 1.Division of General MedicineEmory University School of MedicineAtlanta
  2. 2.the Department of Behavioral Sciences and Health Education, Rollins School of Public HealthEmory UniversityAtlanta
  3. 3.the Division of GeriatricsYale University School of MedicineNew Haven

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