Attitudes and beliefs of African Americans toward participation in medical research

Giselle Corbie-Smith, Stephen B. Thomas, Mark V. Williams, Sandra Moody-Ayers

Research output: Contribution to journalArticlepeer-review

825 Scopus citations


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.

Original languageEnglish
Pages (from-to)537-546
Number of pages10
JournalJournal of General Internal Medicine
Issue number9
StatePublished - 1999

Bibliographical note

Funding Information:
More recently, however, the scientific community began questioning exclusion of certain groups. First, the bioethical principle of justice requires that the burdens and benefits associated with participating in research be distributed within a society. In addition, generalizing and applying research findings from a homogeneous study sample to racially and ethnically diverse populations may not be appropriate. These and other concerns led to the creation of the National Institutes of Health (NIH) Office of Research on Women’s Health in 199028 and culminated in the passage of the NIH Revitalization Act by Congress in 1993.29

Funding Information:
The authors thank Anna Dixon, Michele Revels, and Eric Zook, PhD, of Macro International for their expertise in organizing and executing the focus group interviews. They also thank Dr. William T. Branch for his unwavering support and encouragement throughout this project. This research was supported by an intramural grant from The Emory Medical Care Foundation.


  • African American
  • Informed consent
  • Research participation
  • Trust

ASJC Scopus subject areas

  • Internal Medicine


Dive into the research topics of 'Attitudes and beliefs of African Americans toward participation in medical research'. Together they form a unique fingerprint.

Cite this