. "2 The Burden of Cancer Among Ethnic Minority and the Medically Underserved Populations." 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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the accurate enumeration of population groups, and collection and reporting of important indicators of cancer;
the appropriate conceptualization of human diversity; and,
consideration of the full range of cancer risk factors that should be studied among diverse populations, including socioeconomic factors, environmental factors, behavioral risk, and other factors.
Each of these issues is reviewed in greater detail below.
To its credit, NCI has already begun the process of reevaluating and improving its research and surveillance activities in each of these areas. Recent and ongoing evaluations of these programs include the report of the NCI Cancer Control Review Group (National Cancer Institute, 1997a), recommendations from which have already been implemented to improve the NCI's activities related to behavioral research and the study of ethnic minority populations; the NCI Special Action Committee Report (National Cancer Institute, 1996a), which called for improved assessment and conceptualization of the cancer research needs of ethnic minority and medically underserved groups; and the Surveillance Implementation Review Group, which is on-going and is charged with recommending improvements in NCI's cancer surveillance activities. These activities are described in greater detail below.
Enumeration of Population Groups, and Collection and Reporting of Important Indicators of Cancer
Improving SEER Program Coverage of High-Risk Populations
As discussed earlier in this chapter, the SEER program currently provides the best approximation of a national cancer database. However, its geographic coverage of minorities and medically underserved individuals must be improved. Based on findings and recommendations of the previously cited reviews of the SEER programs, coverage of high-risk populations should be improved to include lower-income or poverty-level whites, particularly those living in rural areas such as Appalachia; Hispanics of all national origins; African Americans living in rural communities, particularly in the South; and American Indian populations. The expansion of the SEER program would permit better analyses of the differences which exist among individuals within the same ethnic group, but who reside in different geographic regions of the country, such as Native Americans, African Americans, Hispanics, and non-Hispanic whites. Including states such as Florida and Texas, Appalachia, and the rural South, which have a high prevalence of poverty and large rural areas, would broaden the representation