Chapter 2:

The Burden of Cancer Among Ethnic Minorities and Medically Underserved Populations

Recommendation 2-1: NIH should develop and implement across all institutes a uniform definition of "special populations" with cancer. This definition should be flexible but should be based on disproportionate or insufficiently studied burdens of cancer, as measured by cancer incidence, morbidity, mortality, and survival statistics.

Recommendation 2-2a: To further enhance the excellent data provided in the Surveillance, Epidemiology, and End Results (SEER) program database, adequate resources should be provided to expand SEER program coverage beyond the existing sites to include high-risk populations for which SEER program coverage is lacking. This expansion should address a wider range of demographic and social characteristics by using consistent nomenclature and a uniform data set and by reflecting the diverse characteristics of the current U.S. population.

Recommendation 2-2b: NCI should continue to work with the North American Association of Central Cancer Registries and other organizations to expand the coverage and enhance the quality of the 45 non-SEER program state cancer registries, with the intent of ultimately achieving—together with the SEER program state registries—two goals: (1) a truly national data set obtained through a system of longitudinal population-based cancer registries covering the entire country, and (2) a reliable database for each state to serve as the basis for both the development and the evaluation of cancer control efforts in that state.

Recommendation 2-3: Annual reporting of cancer surveillance data and population-based research needs to be expanded to include survival data for all ethnic groups, as well as for medically underserved populations.

Recommendation 2-4: The committee recommends an emphasis on ethnic groups rather than on race in NIH's cancer surveillance and other population research. This implies a conceptual shift away from the emphasis on fundamental biological differences among "racial" groups to an appreciation of the range of cultural and behavioral attitudes, beliefs, lifestyle patterns, diet, environmental living conditions, and other factors that may affect cancer risk.