. "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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recognizes the difficulty of trying to classify a heterogeneous group, but the statement did not suggest the kind of data that would prompt a change in name. One way of interpreting this would be to assume that the emphasis would be on risk and that "special populations" would include those populations at highest risk. On the other hand, understanding the factors related to cancer would involve a careful study of the differences between those who are at highest risk and those who are at lowest risk. In the end, it does not matter so much who is defined as "special" as that there be consistency within NCI—and within NIH in general—with respect to how the term is defined.
Defining populations under study is a critical first step to adequately addressing needs of groups most burdened by cancer. The committee therefore offers the following recommendation:
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.
A consistent definition of "special populations" would therefore result from a thorough assessment of cancer burden among specific groups, including data on cancer incidence, mortality, survival, and access to and utilization of cancer services or cancer programs. Where these data are lacking, special efforts should be made to increase data collection and availability. Presumably, these definitions will change as groups at greatest risk for or experiencing disproportionate cancer burden are identified.
The Burden of Cancer Among Ethnic Minorities and Medically Underserved Populations
Cancer was the eighth leading cause of death in the United States at the beginning of the 20th century. Today it is the second leading cause of death. Current estimates indicate that cancer is responsible for one of every four deaths in the United States, second only to cardiovascular disease. The combined national cost of cancer is estimated to be $104 billion, with costs attributed to loss of productivity, medical care, and mortality (National Cancer Institute, 1996c).
Cancer can take the form of more than 100 different diseases, each of which is characterized by the uncontrolled growth of abnormal cells. Researchers have discovered that changes in the genetic material of cells initiate the abnormal growth. Some of the causes of these genetic changes