Attitudes and Beliefs of African Americans Toward Participation in Medical Research

• Published in: Journal of general internal medicine : JGIM Vol. 14; no. 9; pp. 537 - 546
• Main Authors: Corbie‐Smith, Giselle, Thomas, Stephen B., Williams, Mark V., Moody‐Ayers, Sandra
• Format: Journal Article
• Language: English
• Published: Boston, MA, USA Blackwell Science Inc 01.09.1999; Springer; Springer Nature B.V
• Subjects: Adult; African American; African Americans; African Americans - psychology; Aged; Attitude to Health - ethnology; Bioethics; Biological and medical sciences; Clinical Trials as Topic - psychology; Cultural Characteristics; Ethics, Medical; Female; Focus Groups; Georgia; Humans; Informed Consent; Internal medicine; Male; Medical research; Medical sciences; Middle Aged; Original; Perceptions; Physician-Patient Relations; Prevention and actions; Public health. Hygiene; Public health. Hygiene-occupational medicine; research participation; Risk; Specific populations (family, woman, child, elderly...); Surveys and Questionnaires; trust; Georgia; Atlanta Georgia; United States > US; Belief; Human; Participation; American; Attitude; Informed consent; Controlled therapeutic trial; Opinion inquiry; African; Empirical Approach; Biomedical and Behavioral Research
• ISSN: 0884-8734; 1525-1497
• DOI: 10.1046/j.1525-1497.1999.07048.x

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.