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poorer cancer survival rates than whites. American Indians, for example, experience the lowest cancer survival rates of any U.S. ethnic group (Gilliland et al., 1998).
In addition, individuals of all ethnic backgrounds who are poor, lack health insurance, or otherwise have inadequate access to high-quality cancer care typically experience high cancer incidence and mortality rates and low rates of survival from cancer (American Cancer Society, 1990). Many low-income white populations have cancer diagnosis rates as high as or higher than those for ethnic minority groups most affected by the disease. In Appalachian Kentucky, for example, a region characterized by high rates of poverty, the incidence of lung cancer among white males was 127 per 100,000 in 1992, a rate higher than that for any ethnic minority group in the United States during the same period (Gilbert Friedell, Director of the Kentucky Cancer Registry, personal communication, August 8, 1998).
These disparities in the burden of cancer prompted the U.S. Congress in 1997 (P.L. 104–208) to request a review of the programs of research at the National Institutes of Health (NIH) relevant to ethnic minority and medically underserved populations. An Institute of Medicine (IOM) committee was impaneled in 1998 and was charged with the following:
reviewing the status of cancer research relative to minorities and medically underserved populations at the various Institutes, Centers, and Divisions of NIH to evaluate the relative share of resources allocated to cancer in minorities (including a review of NIH's ability to prioritize its cancer research agenda for minorities and medically underserved groups and the role of minority scientists in decision making on research priorities);
examining how well research results are communicated and applied to cancer prevention and treatment programs for minorities and medically underserved populations, and the adequacy of understanding of survivorship issues that uniquely affect minority and underserved communities; and,
examining the adequacy of NIH procedures for equitable recruitment and retention of minorities in clinical trials.
The committee was also asked to make recommendations on an annual reporting mechanism on the status of cancer research at NIH among minority and medically underserved populations.
NIH, as the nation's leading federal agency supporting research to improve the nation's health, and the National Cancer Institute (NCI), as the principal unit of NIH charged with conducting cancer research and