Clinical trials participation among African Americans and the ethics of trust: Leadership perspectives

Abstract

Assuring health equity throughout the U.S. continues to challenge the public and private research enterprise. Even with some progress, racial and ethnic health disparities continue, particularly among African Americans. Health equity for African Americans is improbable unless participation in clinical trials is measurably increased.To inform efforts to enhance participation, interviews were conducted with three African American leadership groups from across the country to document their perceptions of why the research community is unable to engage African Americans effectively in clinical trials. The results of thirty-five interviews, conducted from three leadership groups, were analyzed and are reported in this article. The leadership groups include health/education, faith, and civic society.This research was conducted based upon the ethical protocols of the National Center for Bioethics in Research and Health Care, research ethics, and confidentiality.Findings indicate that trustworthiness must precede trust; both are essential in enhancing African American participation in research, especially in less understood clinical trials.Respondents agreed that the research community must demonstrate trustworthiness before trust can be established. They also indicated the importance of increasing the number of African American researchers in leadership roles. Also, suggestions were made regarding the need to develop short and long-term positive relationships between the research community and the African American population, at various levels, if increases in participation in clinical trials are expected. With the likely development of new clinical research and the attention to increasing excess deaths among African Americans, there must be representative numbers of African Americans and other underserved populations in leadership roles if health disparities are to be eliminated and health equity is to be achieved.