The Science of Health Disparities Research. Группа авторов
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Institutes of Health Bethesda, MD USA
Adelaida Rosario Commissioned Corps Headquarters Office of the Surgeon General Rockville, MD USA
Charles N. Rotimi Center for Research on Genomics and Global Health, National Human Genome Research Institute National Institutes of Health Bethesda, MD USA
Melanie D. Sabado‐Liwag National Institute on Minority Health and Health Disparities National Institutes of Health Bethesda, MD USA
Mariana Sanchez Robert Stempel College of Public Health and Social Work Florida International University Miami, FL USA
Milda R. Saunders Department of Medicine The University of Chicago Chicago, IL USA
Dean Schillinger Division of General Internal Medicine, Department of Medicine at Zuckerberg, San Francisco General Hospital University of California‐San Francisco San Francisco, CA USA; Center for Vulnerable Populations University of California‐San Francisco San Francisco, CA USA; Richard Fine People’s Clinic San Francisco, CA USA
Daniel Shriner Center for Research on Genomics and Global Health, National Human Genome Research Institute National Institutes of Health Bethesda, MD USA
Sarah C. Stallings Vanderbilt University Medical Center Nashville, TN USA; Meharry‐Vanderbilt University Nashville, TN USA
Anita L. Stewart Institute for Health and Aging, Center for Aging in Diverse Communities University of California San Francisco, CA USA
Andrea Williams Stubbs St. Jude Children’s Research Hospital Memphis, TN USA
Meryl Sufian National Institute on Minority Health and Health Disparities National Institutes of Health Bethesda, MD USA
Derrick C. Tabor National Institute on Minority Health and Health Disparities National Institutes of Health Bethesda, MD USA
Sora Park Tanjasiri University of California Irvine, CA USA
Claudia Toledo‐Corral Department of Preventive Medicine, Keck School of Medicine University of Southern California Los Angeles, CA USA
Hannah A. Valantine Scientific Workforce Diversity, Office of the Director National Institutes of Health Bethesda, MD USA
Elizabeth Vang Department of Preventive Medicine, Keck School of Medicine University of Southern California Los Angeles, CA USA
Salina P. Waddy Department of Neurology, Atlanta Veterans Administration Decatur, GA USA
Nina Wallerstein College of Population Health University of New Mexico Albuquerque, NM USA
Joan Wasserman Uniformed Services University of the Health Sciences Bethesda, MD USA
Kristina Weeks Johns Hopkins Center for Health Equity Johns Hopkins University Baltimore, MD USA
Roy E. Weiss Miller School of Medicine University of Miami Miami, FL USA
Marquitta White School of Medicine University of California San Francisco, CA USA
Consuelo H. Wilkins Vanderbilt University Medical Center Nashville, TN USA; Meharry‐Vanderbilt University Nashville, TN USA
Kesi Williams National Institute on Minority Health and Health Disparities National Institutes of Health Bethesda, MD USA; Center for Research to Advance Community Health (REACH) UT Health San Antonio San Antonio, TX USA
Jessamine Winer‐Jones IBM Watson Health International Business Machines (IBM)Corporation Herndon, VA USA
Cheryl A. Winkler Frederick National Laboratory for Cancer Research National Cancer Institute National Institutes of Health Frederick, MD USA
Kent Woo NICOS Chinese Health Coalition San Francisco, CA USA
Shumei Yun Resolve to Save Lives and Vital Strategies New York, NY USA
Xingyou Zhang US Bureau of Labor Statistics Washington, DC USA
Xinzhi Zhang Division of Clinical Innovation, National Center for Advancing Translational Sciences National Institutes of Health Bethesda, MD USA
Foreword
January 10, 1992, the National Institutes of Health (NIH) published within its Guide for Grants and Contracts, special instructions to applicants regarding implementation of new policies concerning the inclusion of women and minorities in clinical research study populations. Many of the senior authors of chapters in this seminal volume and I were among those who advocated strongly for this, then, new policy. It spoke to the under‐representation of racial and ethnic minorities in the science of the times, and strongly argued for closer attention to their inclusion in NIH‐sponsored research as a means of improving said science. The introductory chapter to this volume chronicles the circumstances that led to this policy change, as well as the ensuing response on the part of the NIH and Department of Health and Human Services to its implementation.
Unfortunately, despite such a remarkable advance, the vigilance necessary to realize the promise embodied in this change waned. Indeed, as a long‐standing member of several established NIH study sections charged with determining the scientific merit of thousands of grant applications submitted for prospective funding, I witnessed firsthand the gradual attenuation of this policy of inclusion. Study sections struggled with its operationalization; we lacked carefully crafted examples of how adherence to this policy could be accomplished in a pragmatic fashion and thus improve our science. As a consequence, reviewers gradually drifted from a rigorous application of the policy to a pro forma determination of the adequacy of including under‐represented racial ethnic minorities, roughly equivalent to whether or not sampling plans assured their representation equal to that characteristic of the settings in which this work was to be conducted. One seldom read arguments, for example, for oversampling special populations in a manner that would truly test the hypotheses underpinning the proposed research, and thereby address race, ethnicity, or disadvantage as possibly important sources of variation in the phenomena under study.
Again, numerous contributors to this volume who also served on NIH study sections shared this concern and lamented the absence of careful attention to the implications for the science. Understanding the original arguments for why, scientifically, such individuals should be included in the work sponsored by NIH gradually faded; inattention diluted the promise of this remarkable policy. Arguments for the inclusion of under‐represented racial and ethnic minorities and the disadvantaged in NIH‐sponsored research eventually shifted from the benefit to science to the underlying importance of health equity and social justice. While the latter are important motives for undertaking such work, they are, in my opinion, necessary, but not sufficient conditions for promoting knowledge acquisition and ensuring the scientific merit of such efforts.
One and one‐half decades later, the now National Academy of Medicine reviewed the NIH's strategic research plan to reduce and ultimately eliminate health disparities. This assessment essentially focused on the impact of the National Center on Minority Health and Health Disparities as of 2006, just prior to elevation to its current Institute status. In the Academy's report, the committee, of which several authors in this volume and I were members, concluded that the unfinished business of the Center and NIH was to revitalize a focus on the relevant science and to offer a coherent thematic framework for its pursuit. An emphasis on the social determinants of health emerged and gained increasing currency in anticipating and focusing this work. As the present volume amply demonstrates, this particular framework has played a critical role in organizing attention to the key domains and related constructs that bear importantly on the science underpinning minority health and health disparities research today.
This volume, and its companion piece in the special issue of the American Journal of Public Health, provide a roadmap to guide the science in this area. The chapters contained herein illustrate the importance