As noted above, many factors influence the setting of research priorities at NIH. Priority setting for research on ethnic minority and medically underserved populations, however, is complicated by differences in philosophy regarding how best to address the needs of these groups. NCI's leadership, for example, appears to take the position that research on "special" populations, like other areas of scientific inquiry, cannot be directed or planned and that issues for these groups may be addressed within the larger portfolio of population research (Richard Klausner, director of the National Cancer Institute, presentation to the study committee, June 12, 1998). There is significant evidence to support the position that research often proceeds because of the opportunities presented, and that in many instances, scientific opportunities have resulted in breakthroughs that offer tremendous benefits for ethnic minority and medically underserved communities, as well as for the nation as a whole. For example, the discovery of the role of the hepatitis B virus in the etiology of primary liver cancer, which disproportionately affects Southeast Asian populations, was linked with the development of a vaccine for the prevention of hepatitis B virus infection.
The committee finds, however, that the research priority-setting process at NCI and NIH fails to serve the needs of ethnic minority and medically underserved groups. Assessment of the burden of cancer among ethnic minority and medically underserved populations and consideration of these factors within the larger framework of scientific opportunity should be key aspects of the research priority-setting process. This conclusion is also supported in a recommendation made by the NCI Special Action Committee in its 1996 report (National Cancer Institute, 1996a), which advocated a data-driven review of the cancer burden among ethnic minority and medically underserved populations as a means of identifying priority research areas.
Two offices serve as logical focal points for the development of a strategic plan to address cancer among ethnic minority and medically underserved populations and assess progress toward that goal. One, the NIH Office of Research on Minority Health (ORMH), serves to coordinate research across NIH institutes on broad ethnic minority health research topics. One of the office's major functions is to stimulate research on minority populations at relevant NIH ICs by providing research supplements to leverage IC resources. ORMH has only recently, however, created a standing advisory panel to help guide the establishment of research priorities (this function had previously been assumed by an ad hoc panel), and it does not participate in the Research Enhancement Awards Program with other specialty offices at NIH to coordinate funding proposals and priorities. Its criteria for program funding and research priorities have therefore been less open to public scrutiny. In addition, ORMH program funding