groups, including coordination of an overall research agenda on survivorship and a more structured framework for monitoring knowledge, attitudes, and behavior regarding cancer survivorship.

Chapter 7:

Monitoring and Reporting

Recommendation 7-1: The committee recommends a regular reporting mechanism to increase NIH accountability to the U.S. Congress and public constituencies. Such reports should

  • report on data on progress against cancer using the nomenclature "ethnic groups" rather than "racial" groups and include data on medically underserved populations with ethnic group data;
  • provide data on the incidence of cancer at several cancer sites, including those cancers that disproportionately affect ethnic minority and medically underserved populations;
  • consider as one alternative reporting of mortality data in terms of "potential reduction of deaths," a statistic that is based on the lowest mortality rate among U.S. ethnic groups and that emphasizes the need for cross-cultural studies to ascertain optimal strategies for cancer prevention, treatment, and control;
  • link research findings to reductions in cancer incidence and mortality and identify any gaps that may occur in this linkage; and
  • report on "process" developments, such as the number and type of research programs specifically targeted to ethnic minority and medically underserved groups and the contributions of ethnic minority scientists and community groups to the research priority-setting process.

important historical, social, and political significance in the United States, they are of limited utility for purposes of health research because the concept of race rests upon unfounded assumptions that there are fundamental biological and behavioral differences among racial groups (American Anthropological Association, 1998; Cooper, 1984; President's Cancer Panel, 1997; Williams et al., 1994). In reality, human biodiversity cannot be adequately summarized according to the broad, presumably discrete categories assumed by a racial taxonomy. Furthermore, "racial" groups as defined by OMB are not discernible on the basis of genetic information (American Anthropological Association, 1998; President's Cancer Panel, 1997). The committee considers the term "ethnic group" as a more appropriate



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