. "5 Advancing State-of-the-Art Treatment and Prevention." The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press, 1999.
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This chapter begins with an assessment of NIH's efforts to include ethnic minority and medically underserved populations in NIH-sponsored cancer treatment and prevention trials. Particular attention is paid to the unique issues involved in recruiting these populations and retaining them in clinical trials, given the high quality of care generally afforded to patients enrolled in clinical trials and the importance of testing hypotheses with diverse populations to ensure the generalizability of findings. Next, the chapter reviews the strategies that NIH uses to disseminate information regarding cancer research to ethnic minority and medically underserved populations, their providers, and community-based health organizations.
Recruitment and Retention of Ethnic Minority and Medically Underserved Participants in Clinical Cancer Research
Clinical research forms the backbone of scientific advancements in medicine. New medications, preventive and rehabilitative interventions, and other innovations must be tested under the rigorous conditions of clinical trial research to understand whether these applications will work effectively, under what conditions they will work, and whether patients will be exposed to unintended harmful effects. Because patients are monitored closely under most clinical trial protocols, they often receive a higher quality of medical care and follow-up than patients who are not enrolled in clinical trials. This holds true even among patients in clinical trials assigned to "no-treatment" or "placebo" control groups in randomized trials.
Ethnic minority and medically underserved populations, however, have historically not participated in clinical trial research at rates proportional to participation rates among middle- and upper-income whites. Many factors may underlie this disparity. Examples of historical abuse of ethnic minorities in research abound; most researchers, and in particular, many in African-American communities, point to the Tuskegee syphilis experiment as a significant source of minority mistrust of the scientific establishment. In that study, federal researchers followed approximately 400 lower-income African-American men in rural Macon County, Alabama, who were infected with syphilis to study the natural history of the disease. Left untreated, syphilis can cause a host of life-threatening medical and cognitive complications. Yet, despite the availability of treatments such as penicillin, these men were denied treatment and were not informed of their infection. When news of the study became public in 1972, the study was abruptly halted, and the federal government and other public and private research