Factors Affecting Ethnic Accrual and Inclusion of Minorities in Research
In January 1996, the National Cancer Institute (NCI), in conjunction with the National Cancer Advisory Board, the American Cancer Society, the Oncology Nursing Society, and the National Institutes of Health (NIH) Office of Research on Women's Health and Office of Research on Minority Health, organized a conference entitled "Recruitment and Retention of Minority Participants in Clinical Cancer Research." The 2-day conference brought together national experts on minority health and clinical trials research to share perspectives and strategies to improve the rate of inclusion of ethnic minorities in research. The proceedings of the conference were published by NCI (National Cancer Institute, 1996d). In the Executive Summary, conference participants concluded that the achievement of equity in clinical trials will require that four goals be met:
- there must be professional and institutional commitment to increasing minority participation;
- data on the cancer burden in subpopulations must be collected and made available;
- there must be more research on the accrual and retention process in a whole range of clinical trials, with specific attention paid to accessibility, education, communication, and attitudes of participants, physicians, and communities; and
- there must be minority participation not only in clinical trials, but also in the conduct of clinical trials (National Cancer Institute, 1996d).
The committee supports the findings and recommendations of the five conference panels, some of which are summarized below with respect to specific issues and populations.
ETHICAL ISSUES IN RECRUITMENT OF MINORITY PARTICIPANTS
Three ethical principles should guide the behavior of individuals who conduct clinical research, particularly with respect to oversight by institutional review boards (IRBs), according to Nancy Kass of Johns Hopkins University. These ethical principles are respect for autonomy, beneficence, and justice. Occasionally, these principles conflict with each other, which requires priorities to be considered.
CULTURAL ADAPTATIONS FOR OVERCOMING BARRIERS
Cultural factors significantly affect the recruitment of Native Americans into clinical trials, according to Linda Burhansstipanov, Director of