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Institute of Medicine (US) Committee on Cancer Research Among Minorities and the Medically Underserved; Haynes MA, Smedley BD, editors. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington (DC): National Academies Press (US); 1999.

Cover of The Unequal Burden of Cancer

The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved.

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Preface

In 1971, President Richard M. Nixon signed the National Cancer Act and assigned the leadership for the "War on Cancer" to the National Cancer Institute (NCI). Since that time, NCI has vigorously supported research that has broadened our understanding of the mechanisms of carcinogenesis and has led the way to advances in prevention, control, and treatment of a disease for which there is increasing demand for a "cure." Congress, and the public at large, are deeply indebted to NCI for its outstanding research leadership, and the results of those efforts are beginning to be more widely recognized.

However, Congress has from time to time requested assurance that all segments of the population are benefiting from the results of this research, in accordance with the mission of the National Institutes of Health (NIH) to conduct research to improve the health of all Americans. This study was prompted by a concern for ethnic minority and medically underserved populations that often experience a greater burden of cancer. The committee began its work in late January 1998, and completed its report in the fall of that year. In the process, we received presentations from the director of NCI and several members in leadership positions within the institute. The committee also reviewed numerous documents from NCI and other NIH institutes. To better understand how NIH's work has been received by important constituencies, the committee also conducted a survey of researchers involved in relevant research and heard from a number of community organizations with specific interests in cancer among these populations.

Our findings and recommendations are provided in this report, which is organized as follows:

  • a brief history of the nation's struggle against cancer (Chapter 1);
  • information on the burden of cancer among ethnic minorities and the medically underserved, and recommendations addressing the quality and scope of the data on which cancer research for these populations is based (Chapter 2);
  • a review of research and training programs and activities on ethnic minorities and medically underserved populations at NIH and recommendations on how these programs and activities could be improved (Chapters 3 through 6); and,
  • an annual reporting mechanism on the status of cancer research among ethnic minorities and the medically underserved at NIH, and recommendations on what these reports should contain (Chapter 7).

The committee was impressed by the momentum around these issues at NCI. In fact, some of the recommendations were already in the process of being implemented before the report was completed. The committee has felt free to make its recommendations always with the best interests of the populations concerned in mind and with the hope that the already excellent leadership provided by NCI will become even better.

The committee deeply appreciates the cooperation received from NCI and the other institutes at NIH in providing information we requested, and then subsequently providing still more information as the first set led to further requests. These efforts were graciously coordinated by Dr. Otis Brawley of NCI. Dr. Delores Parron of the National Institute of Mental Health served as the study's project officer and was instrumental in facilitating the project's timely completion. The committee is also grateful to the National Center for Health Statistics for documenting the methodology and caveats of an alternative method for assessing progress by considering the potential reduction of cancer deaths if the best rate among all ethnic groups were used as a reference. Finally, we were fortunate to receive the active input and contributions of Dr. Amelie Ramirez, a member of the Institute of Medicine and National Research Council's National Cancer Policy Board.

The work of the committee was a pleasure because of the enthusiasm and commitment of its members, greatly facilitated by an outstanding project director and a dedicated staff. All that is now necessary to complete our feeling of satisfaction is for the recommendations to continue to be implemented in a timely fashion so that all ethnic groups of our one race, the human race, are able to benefit from a reduction in what promises to be the leading cause of death in the twenty-first century.

M. ALFRED HAYNES, M.D.

CHAIR

Copyright © 1999, National Academy of Sciences.
Bookshelf ID: NBK1786

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