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The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved (1999)
Institute of Medicine (IOM)

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. "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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    6.  

    Provide a basis for cancer control interventions through the identification of subgroups of the population at high risk of cancer. These groups may be defined by geographic location, demographic variables, variables reflecting socioeconomic status, environmental and occupational exposures, biological characteristics, and factors which measure the effects of host and environment interactions.

    7.  

    Conduct surveys of selected subgroups of the covered populations which provide data on the prevalence of cancer risk factors and screening, knowledge, and attitudes related to cancer control.

    8.  

    Promote research studies measuring progress in cancer control and that link information from the biomedical and social sciences.

    9.  

    Conduct studies of multiple primary cancers with particular emphasis on the identification of iatrogenic cancers.

    10.  

    Encourage specialty training in epidemiology, biostatistics, and tumor registry methodology, operation, and management.

Data collection for the SEER program began in 1973 and included the entire states of Connecticut, Iowa, New Mexico, Utah, and Hawaii, and the metropolitan areas of Detroit and San Francisco-Oakland. These seven areas were selected both because of their diverse ethnic subgroups and because of ongoing registration activities. The Commonwealth of Puerto Rico was also included as a participant to "monitor cancer incidence in an industrially developing area with overall low cancer risk" (National Cancer Institute, 1998c, p. 35). Coverage of the SEER program was expanded in 1974 to include representation from southern (New Orleans, Louisiana) and northwestern (Seattle-Puget Sound in Washington state) regions of the country which were not covered in the initial program. The program was further expanded in 1975 to include the metropolitan area of Atlanta, Georgia, which increased coverage of the African-American population, and was expanded again in 1979 to include 10 rural counties in Georgia to provide coverage of a rural, African-American population of 50,000. In 1983, a four-county area of New Jersey was added to increase coverage of African Americans and Hispanics. New Orleans and New Jersey were subsequently dropped from the program for "technical reasons" (National Cancer Institute, 1998c).

In early 1988, an extramural panel of epidemiologists, clinical oncologists, and pathologists was convened to review the accomplishments of the SEER program and make recommendations for the future. They recommended that the scope be expanded to cover a much wider range of surveillance. Specifically, the committee recommended that the "registration areas should be expanded to achieve adequate coverage of those populations—such as ethnic groups, rural dwellers, and the economically deprived—that are not yet sufficiently represented" (National Cancer Institute,

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