. "4 Evaluation of Priority Setting and Programs of Research on Ethnic Minority and Medically Underserved Populations at the National Institutes of Health." 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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five most burdensome cancers will be adequate, and no uniform measure of burden across all subpopulations will be feasible.
The committee agrees with many of the conclusions of the recent IOM Committee on Priority Setting at NIH (Institute of Medicine, 1998), especially its general endorsement of the peer-review process and the central importance of scientific opportunity as a necessary condition for the allocation of scarce resources. However, lying beyond the scope of its charge are issues that this committee was asked to evaluate, and the committee concludes that in setting priorities for research among special populations, additional weight must be given to burden of disease. This does not mean that the demand for scientific opportunity should be sacrificed, however; it means only that unless NCI takes steps to initiate and stimulate research among special populations, the scientific opportunities from research within those communities will continue to lag behind those from research in areas where more effort has been expended in the past. Moreover, the committee concludes that as a supplement to the regular mechanisms for investigator-initiated research, additional steps are necessary to ensure that research questions for all of the subpopulations that NCI serves are adequately addressed. The committee concludes this chapter with the following recommendations.
Recommendation 4-4: Investigator-initiated research must be supplemented to ensure that the cancer research needs of ethnic minority and medically underserved populations are addressed.
The committee finds that the research priority-setting process at NCI and NIH fails to serve the needs of minority and medically underserved populations. Although the processes for receiving input from interested scientists (e.g., ethnic minority scientists and those interested in research among ethnic minority and medically underserved populations), community groups, and consumers are improving (e.g., with the conception of DCLG), the level of representation of these groups on key NCI advisory panels should be improved. In addition, their impact on the priority-setting process should be evaluated to ensure that policy changes follow from increased representation. Assessment of the burden of cancer among minority and medically underserved populations and consideration of the burden of cancer within the large framework of scientific opportunity should be key aspects of the research priority-setting process. To stimulate research on cancer among minority and medically underserved populations, NCI must expand RFAs and other mechanisms, especially in areas