Toward Environmental Justice

Research, Education, and Health Policy Needs

Committee on Environmental Justice

Health Sciences Policy Program

Health Sciences Section

INSTITUTE OF MEDICINE

NATIONAL ACADEMY PRESS
Washington, D.C.
1999



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--> Toward Environmental Justice Research, Education, and Health Policy Needs Committee on Environmental Justice Health Sciences Policy Program Health Sciences Section INSTITUTE OF MEDICINE NATIONAL ACADEMY PRESS Washington, D.C. 1999

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--> NATIONAL ACADEMY PRESS 2101 Constitution Avenue, N.W. Washington, D.C. 20418 NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance. The Institute of Medicine was chartered in 1970 by the National Academy of Sciences to enlist distinguished members of the appropriate professions in the examination of policy matters pertaining to the health of the public. In this, the Institute acts under both the Academy's 1863 congressional charter responsibility to be an adviser to the federal government and its own initiative in identifying issues of medical care, research, and education. Dr. Kenneth I. Shine is president of the Institute of Medicine. Support for this project was provided by the National Institutes of Health through the National Institute of Environmental Health Sciences, the National Cancer Institute, the National Institute of Dental Research, the National Institute of Neurological Disorders and Stroke, the National Institute of Allergy and Infectious Diseases, the National Institute of General Medical Sciences, the National Institute of Alcohol Abuse and Alcoholism, the National Institute for Nursing Research, the National Center for Human Genome Research, the National Heart, Lung, and Blood Institute, the Office of Research on Minority Health, the National Institute for Occupational Safety and Health, and the National Center for Environmental Health (Task Order 14 of Contract No. NO1-OD-4-2139). Additional funding was provided by the U.S. Department of Energy, the Environmental Protection Agency, and the Centers for Disease Control and Prevention through an interagency agreement with the National Institute of Environmental Health Sciences. The views presented in this report are those of the Committee on Environmental Justice and are not necessarily those of the funding organization. International Standard Book No. 0-309-06407-4 Additional copies of this report are available for sale from the National Academy Press , 2101 Constitution Avenue, N.W., Box 285, Washington, DC 20055. Call (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area), or visit the NAP's on-line bookstore at www.nap.edu. The full text of this report is available on line at www.nap.edu For more information about the Institute of Medicine, visit the IOM home page at www2.nas.edu/iom. Copyright 1999 by the National Academy of Sciences. All rights reserved. Printed in the United States of America The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The image adopted as a logo-type by the Institute of Medicine is based on a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin.

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--> COMMITTEE ON ENVIRONMENTAL JUSTICE JAMES R. GAVIN (Cochair), Senior Scientific Officer, Howard Hughes Medical Institute, Chevy Chase, Maryland DONALD R. MATTISON (Cochair), Medical Director, March of Dimes Birth Defects Foundation, White Plains, New York REGINA AUSTIN, William A. Schnader Professor of Law, University of Pennsylvania Law School DAVID R. BAINES, Family Practice Physician, St. Maries Family Medicine Clinic, St. Maries, Idaho BARUCH FISCHHOFF, Professor of Social and Decision Sciences and Professor of Engineering and Public Policy, Carnegie Mellon University GEORGE FRIEDMAN-JIMÉNEZ, Director, Occupational and Environmental Health Clinic, Bellevue Hospital, New York University BERNARD D. GOLDSTEIN, Director, Environmental and Occupational Health Sciences Institute, and Professor and Chairman, Department of Environmental and Community Medicine, Robert Wood Johnson Medical School, Piscataway, New Jersey JAMES G. HAUGHTON, Medical Director, Public Health Programs and Services, Los Angeles County Department of Health Services, Los Angeles SANDRAL HULLETT, Health Services Director, West Alabama Health Services, Inc., Eutaw LOVELL A. JONES, Director, Experimental Gynecology-Endocrinology, Department of Gyneologic Oncology, M. D. Anderson Cancer Center, University of Texas at Houston CHARLES LEE, Director of Environmental Justice, United Church of Christ Commission for Racial Justice, New York ROGER O. McCLELLAN, President, Chemical Industry Institute of Toxicology, Research Triangle Park, North Carolina ROBERT A. SCALA,* Toxicologist (Retired), Rehoboth Beach, Delaware MARY ANN SMITH, Assistant Professor, School of Public Health, University of Texas at Houston WALTER J. WADLINGTON, James Madison Professor of Law, The University of Virginia School of Law, and Professor of Legal Medicine, The University of Virginia School of Medicine *   Served from March 1996 to August 1996.

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--> Committee Liaisons ENRIQUETA C. BOND, President, The Burroughs Wellcome Fund, Durham, North Carolina MARK R. CULLEN, Professor of Medicine and Public Health, Yale Occupational and Environmental Medicine Program, Yale University School of Medicine Study Staff VALERIE P. SETLOW, Director, Division of Health Sciences Policy and Study Director (until December 1997) EDWARD HILL III, Study Director (until November 1996) YVETTE J. BENJAMIN, Research Associate (until December 1997) PETER BOUXSEIN, Senior Program Officer (from September 1998) ANDREW M. POPE, Director, Health Sciences Policy Program MARY JAY BALL, Project Assistant (until January 1997) GLEN SHAPIRO, Project Assistant/Research Assistant (from July 1998) Section Staff CHARLES H. EVANS, JR., Head, Health Sciences Section LINDA DEPUGH, Administrative Assistant JAMAINE TINKER, Financial Associate

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--> REVIEWERS This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council's Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the Institute of Medicine in making the published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. The committee wishes to thank the following individuals for their participation in the review of this report: JOHN ALDERETE, University of Texas Health Science Center at San Antonio; MARK CULLEN, Yale School of Medicine; CASWELL A. EVANS, JR., National Institute of Dental Research, Bethesda, Maryland; HOWARD KIPEN, Environmental and Occupational Health Sciences Institute, Rutgers University; JUDITH R. LAVE, University of Pittsburgh; FLOYD MALVEAUX, Howard University College of Medicine; GILBERT S. OMENN, University of Michigan; ELLEN K. SILBERGELD, University of Maryland; and ALICE S. WHITTEMORE, Stanford University School of Medicine. While the individuals listed above have provided constructive comments and suggestions, it must be emphasized that responsibility for the final content of this report rests entirely with the authoring committee and the Institute of Medicine.

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--> Preface The subject of environmental justice elicits strong emotion from many parties. Neither the serious health concerns nor the charges of biased or unfair policies that are implicit in the subject can be taken lightly. More importantly, however, the communities of concern, such as those that the committee saw firsthand, carry burdens beyond poor health. They carry the burden of frustration and feelings of helplessness and betrayal. For these reasons, environmental justice differs from most other areas of research and study. The committee therefore felt that it was important to approach our task by different methods. The clearest example of this is that the committee visited a number of communities with a variety of types of exposures and potential health effects with various political, social, and regulatory histories. These interactions allowed committee members to hear firsthand the myriad interrelated concerns and to witness the residents' feelings toward systems that the residents felt did not recognize or respond to their environmental health needs. This study by our committee was requested because of the evidence that some sectors of U.S. society bear a disproportionate share of environmental exposure and harm: more than is borne by other sectors of society and more than can be justified by any benefits that they receive from the sources of this harm. A reasonable corollary is that the concerns of these sectors are underrepresented in environmental science. Were their concerns more central to the scientific enterprise, it would have "discovered" environmental justice much earlier than has been the case. The committee came to several important conclusions. First, it is the committee's heart-felt belief that all communities in the United States should live in environments supportive of health and that differential exposures to environmental stressors should be eradicated. Some communities exposed to higher levels of environmental stressors include minority and economically disadvantaged

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--> populations. Because the populations of these communities are small and because they also have other complex disease risks, it is frequently difficult to separate exposures to environmental stressors from other disease or health risks. For these reasons, the committee calls upon federal, state, and local regulatory authorities to work with public health agencies to ensure that no communities within their jurisdictions suffer from disproportionate exposures to any environmental stressor. The committee's second conclusion is that environmental justice research has constituent constraints and goals. First, environmental justice research is based on solving specific problems, and therefore, the results of the research are inherently tied to the community of concern. Second, the results may need to be translated into public policy even if they are incomplete or inconclusive. The communities of concern in the context of environmental justice typically have many social, behavioral, and economic risk factors for disease as well as complex environmental stressors. This makes the identification of the causation—or determination of the etiology—of the adverse health status typically experienced by these communities difficult. However, the committee believes that a concerted effort is needed to identify approaches that can improve the ability to define causation in this context, including the increased validation and use of biological markers, the development of enhanced biostatistical and epidemiological approaches, and the provision of appropriate funding for investigators and communities that participate in this research. The third conclusion is that the public health, medical, and policy communities—as well as the citizens of the nation—need to be given an opportunity to understand what is and what is not known about the potential for adverse health effects resulting from exposures to environmental stressors. For this reason, the committee recommends a set of educational goals that are aimed at health professionals and policy communities and that can be extended to the general public. Addressing the environmental justice-related issues discussed above could require a substantial reorganization and reorientation of the research enterprise. It means facing core issues in how research is funded and managed. In the short run, this could mean disrupting processes that are already quite arduous. Scientists and administrators work hard to develop and implement projects within the existing constraints of lobbying the U.S. Congress, submitting proposals, executing studies, mentoring students, weathering peer review, and so on. In the longer run, though, confronting the issues raised by environmental justice can strengthen the scientific enterprise. In an era of fiscal constraint, it can focus thinking about who are the ultimate "clients" for federal research and how their political support can be secured. It may even generate a new and vocal constituency. For projects that require observations within affected communities, a cooperative relationship might be needed for research to be conducted at all. Moreover, the science itself may benefit from consideration of the social context within which it is conducted. That exercise can provide insight into unwitting assumptions that scientists might not otherwise recognize. It can provide the

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--> impetus for the interdisciplinary collaboration that must be a part of effective solutions to complex environmental problems. Environmental justice issues and concerns typically involve several types of agencies with different research and regulatory mandates. The committee heard repeatedly from participants at the site visits about the difficulties associated with the fact that there is no well-identified point of contact in the various agencies responsible for responding to their concerns. A single federal agency or coordinating committee with better authority and responsibility across all administrative barriers should be assigned to those communities where environmental justice is a concern. An excellent example of how this could work is the consortia of agencies that have supported this study. The National Institute of Environmental Health Sciences, in taking the lead with other federal agencies (the Centers for Disease Control and Prevention, the Environmental Protection Agency, and the U.S. Department of Energy), has provided a useful approach toward a research policy request. Such an approach could provide a clearinghouse and communication channel between federal agencies and state and local entities. Much remains to be learned about environmental health and environmental justice. Great strides need to be taken in terms of the interrelated topics of research and education before society can ensure environmental justice in its broadest sense. Until then, environmental justice needs to become a higher priority in the fields of public health, research, education, and health policy. More importantly, these areas need to be approached systematically so that research directly affects policy to improve public health and education and that policy, together with public health, identifies needs that can be addressed by research. As increasing numbers of laypeople, health care professionals, and policymakers become aware of the issues and become cognizant of the problems, communities can be assisted in striving toward environmental justice. James R. Gavin III Donald R. Mattison Cochairs

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--> Contents 1   Introduction and Executive Summary   1     Concepts and Definitions   1     The Committee's Origin and Task   3     The Committee's Task   3     The Data and Site Visits   5     Conclusions and Recommendations   6     Research   6     Education   7     Health Policy   8     Organization of the Report   9 2   Establishing a Baseline   11     Disparities in Health Status in the United States   11     Low Birth Weight   13     Infant Mortality   13     Death Rates   13     Cancer   13     Disparities in Exposure to Environmental Hazards   14     Examining Proximity to Environmental Health Hazards   14     Characterizing Exposure   16     Examining the Link Between Exposure and Health   18     Lack of Health Status Characterization   19     Failure of Differentiation of Populations and Differences in Outcomes   20     A Case Study: Urban Asthma   20     Conclusions   21

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--> 3   Research   23     Research Methodologies   24     Documenting Excessive Exposures   24     Assessing Susceptibility to Environmental Hazards   26     Measuring the Health Effects of Exposure to Environmental Health Hazards   27     Biomarkers   29     Research Challenges   33     Improving Epidemiologic Studies   34     Addressing Race   35     Participatory Research   36     Enhancing Support for Research   40     Conclusions and Recommendations   41 4   Education   45     Health Professional Education   46     Enhancing Health Professional Education   46     Increasing the Number of Minority Health Professionals   51     Education of the Public   52     Educating Children   53     Community Leadership   55     Conducting Participatory Research   55     Conclusions and Recommendations   57 5   Health Policy   61     Current Science Base for Environmental Justice   61     Expanding the Policy Process   64     Conclusions and Recommendations   65     References   69     Appendixes         A  Using Disease Cluster and Small-Area Analyses to Study Environmental Justice   79     B  Acknowledgments   103     C  Acronyms   109     D  Executive Order 12898   111     E  Committee and Staff Biographies   121     Index   131

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Toward Environmental Justice

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