Recommendation 2-5: The committee commends the proposed NCI program of expanded behavioral and epidemiological research examining the relationship between cancer and cancer risk factors associated with various ethnic minority and medically underserved groups, and recommends that these studies be conducted both across and within these groups.
In this chapter, the committee has reviewed some of the difficulties associated with understanding and defining the problem of cancer among ethnic minorities and medically underserved individuals. In a large and diverse nation such as the United States, with its many overlapping population groups that may experience differences in cancer risk as a result of a complex interplay of environmental, cultural, socioeconomic, behavioral, and other factors, the use of clear and consistent definitions of populations is imperative to understanding how cancer differentially burdens various groups among the overall population. Depending on how populations are defined, cancer incidence, mortality, and survival rates vary considerably. Some ethnic minority groups, for example, may experience lower rates of some forms of cancer relative to the white majority; others, such as African Americans, experience higher rates of cancer incidence and mortality, and lower cancer survival rates. Groups of lower SES experience cancer incidence and mortality rates that are, in many instances, as high as the highest of any ethnic minority group. Understanding why cancer differentially affects these groups offers important clues to cancer etiology and control research.
Because cancer surveillance is critical to this effort, the committee finds that greater resources must be committed to expanding upon the existing, high-quality SEER program data. Additional data must be collected to understand cancer among medically underserved groups, and SEER program coverage of other important population groups should be improved. Because the problem of defining populations is complex, the committee offers recommendations on how population groups may be conceptualized, but recognizes that the NIH has been constrained in its data collection efforts by current federal guidelines.
The following recommendations were offered:
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.