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The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding The Health of Lesbian, Gay, Bisexual, and Transgender People Building a Foundation for Better Understanding Committee on Lesbian, Gay, Bisexual, and Transgender Health Issues and Research Gaps and Opportunities Board on the Health of Select Populations INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu
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The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding THE NATIONAL ACADEMIES PRESS 500 Fifth Street, N.W. Washington, DC 20001 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. This study was supported by Contract No. N01-OD-4-2139 between the National Academy of Sciences and the National Institutes of Health. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the view of the organizations or agencies that provided support for this project. Library of Congress Cataloging-in-Publication Data The health of lesbian, gay, bisexual, and transgender people : building a foundation for better understanding / Committee on Lesbian, Gay, Bisexual, and Transgender Health Issues and Research Gaps and Opportunities, Board on the Health of Select Populations, Institute of Medicine of the National Academies. p. ; cm. Includes bibliographical references and index. ISBN 978-0-309-21061-4 (hardcover) — ISBN 978-0-309-21062-1 (pdf) 1. Gays—Medical care—United States. 2. Bisexuals—Medical care—United States. 3. Transgender people—Medical care—United States. I. Institute of Medicine (U.S.). Committee on Lesbian, Gay, Bisexual, and Transgender Health Issues and Research Gaps and Opportunities. [DNLM: 1. Health Status—United States. 2. Minority Health—United States. 3. Bisexuality—United States. 4. Health Services Research—United States. 5. Homosexuality—United States. 6. Transsexualism—United States. WA 300 AA1] RA564.9.H65H44 2011 362.1086’64—dc23 2011017453 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Copyright 2011 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 serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin. Cover design by LeAnn Locher. Suggested citation: IOM (Institute of Medicine). 2011. The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding. Washington, DC: The National Academies Press.
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The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding “Knowing is not enough; we must apply. Willing is not enough; we must do.” —Goethe INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES Advising the Nation. Improving Health.
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The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding THE NATIONAL ACADEMIES Advisers to the Nation on Science, Engineering, and Medicine The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Charles M. Vest is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively, of the National Research Council. www.national-academies.org
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The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding COMMITTEE ON LESBIAN, GAY, BISEXUAL, AND TRANSGENDER HEALTH ISSUES AND RESEARCH GAPS AND OPPORTUNITIES ROBERT GRAHAM (Chair), Professor of Family Medicine and Robert and Myfanwy Smith Chair, Department of Family Medicine, University of Cincinnati College of Medicine, Ohio BOBBIE A. BERKOWITZ, Dean and Mary O’Neil Mundinger Professor, Columbia University School of Nursing; Senior Vice President, Columbia University Medical Center, New York, New York ROBERT BLUM, William H. Gates, Sr. Professor and Chair, Department of Populations, Family and Reproductive Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland WALTER O. BOCKTING, Associate Professor, Program in Human Sexuality, Department of Family Medicine and Community Health, University of Minnesota Medical School, Minneapolis JUDITH BRADFORD, Co-Chair, The Fenway Institute; Director, Center for Population Research in Lesbian, Gay, Bisexual and Transgender Health, Boston, Massachusetts BRIAN de VRIES, Professor of Gerontology, San Francisco State University, California ROBERT GAROFALO, Associate Professor of Pediatrics, Northwestern University’s Feinberg School of Medicine, and Director, Adolescent HIV Services, Children’s Memorial Hospital, Chicago, Illinois GREGORY HEREK, Professor of Psychology, Department of Psychology, University of California, Davis ELIZABETH A. HOWELL, Associate Professor, Departments of Health Evidence and Policy and Obstetrics, Gynecology, and Reproductive Science and Psychiatry, Mount Sinai School of Medicine, New York, New York DANIEL KASPRZYK, Vice President and Director, Center for Excellence in Survey Research, National Opinion Research Center at the University of Chicago, Bethesda, Maryland HARVEY J. MAKADON, Clinical Professor of Medicine, Harvard Medical School and Director of Professional Education and Training, The Fenway Institute, Boston, Massachusetts CHARLOTTE J. PATTERSON, Professor of Psychology, Department of Psychology, University of Virginia, Charlottesville JOHN L. PETERSON, Professor, Department of Psychology, Georgia State University, Atlanta CAITLIN C. RYAN, Director, Family Acceptance Project at the Marian Wright Edelman Institute, San Francisco State University, San Francisco, California
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The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding MARK A. SCHUSTER, William Berenberg Professor of Pediatrics, Harvard Medical School, and Chief, Division of General Pediatrics, Children’s Hospital, Boston, Massachusetts LOWELL J. TAYLOR, Professor of Economics, Heinz College, Carnegie Mellon University, Pittsburgh, Pennsylvania RUTH E. ZAMBRANA, Professor of Women’s Studies and Director of the Consortium on Race, Gender and Ethnicity, University of Maryland, College Park Study Staff MONICA N. FEIT, Study Director JOSHUA JOSEPH, Associate Program Officer JON Q. SANDERS, Program Associate KAREN M. ANDERSON, Senior Program Officer ANDREA COHEN, Financial Associate FREDERICK (RICK) ERDTMANN, Director, Board on the Health of Select Populations SARAH ISQUICK, Christine Mirzayan Science and Technology Policy Graduate Fellow, Fall 2010 Consultants RONA BRIERE, Briere Associates, Inc., Felton, Pennsylvania JOHN D’EMILIO, University of Illinois at Chicago RONALD C. FOX, Saybrook University, San Francisco, California CARLOS GODOY, Rensselaer Polytechnic Institute, Troy, New York ROBERT BRADLEY SEARS, The Williams Institute on Sexual Orientation and Gender Identity Law and Public Policy, UCLA School of Law, California
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The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding 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 institution in making its 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. We wish to thank the following individuals for their review of this report: Thomas J. Coates, David Geffen School of Medicine, University of California, Los Angeles Anthony R. D’Augelli, Pennsylvania State University Lisa M. Diamond, University of Utah Angela Diaz, Mount Sinai School of Medicine Jamie Feldman, Program in Human Sexuality, University of Minnesota Karen Fredriksen-Goldsen, University of Washington School of Social Work Gary Gates, The Williams Institute, University of California, Los Angeles School of Law Susan R. Johnson, University of Iowa David E. Kanouse, The RAND Corporation David J. Malebranche, Emory University School of Medicine Vickie M. Mays, University of California, Los Angeles Patricia Robertson, University of California, San Francisco
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The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding Ronald Stall, University of Pittsburgh Alan M. Zaslavsky, Harvard Medical School Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the report’s conclusions or recommendations, nor did they see the final draft of the report before its release. The review of this report was overseen by Kristine M. Gebbie, City University of New York, and Bradford H. Gray, The Urban Institute. Appointed by the National Research Council and the Institute of Medicine, they were responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.
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The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding Preface In 1999 the Institute of Medicine (IOM) released the report Lesbian Health—the first IOM report that focused on the health of a sexual-minority population. In addition to presenting what was known about the health status of lesbians, the report highlighted the challenges inherent in conducting research on the health needs and risks of this population. The report created an awareness about the health of lesbians and the importance of research in improving their health. Society has experienced many changes during the ensuing 12 years, yet much remains unknown about the health status of sexual and gender minorities. Moreover, many of the research challenges identified in Lesbian Health persist today. At the request of the National Institutes of Health (NIH), in 2010 the IOM convened a committee to assess the current state of knowledge about the health of lesbian, gay, bisexual, and transgender people, as well as to identify research gaps and formulate a research agenda that could guide NIH in enhancing and focusing its research in this area. The task before the committee was broad and complex. In considering the health of sexual and gender minorities, the committee recognized that not only are lesbians, gay men, bisexual men and women, and transgender people all separate groups, but each of these groups encompasses subpopulations with their own unique health needs. This report presents a wealth of information that has, for the first time, been compiled and organized in a comprehensive fashion. It is the product of more than a year of information gathering, review, and deliberation. The committee benefited from three open meetings (two in Washington, DC, and one in San Francisco) where not only invited presenters but also members of the public generously gave
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The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding of their time, shared their knowledge, and responded to questions from the committee. These sessions, along with materials submitted from various sources, were invaluable in furthering the committee’s understanding of the topic. On behalf of the committee, in addition to the presenters, reviewers, consultants, and members of the public who assisted in the creation of this report, I extend our deepest thanks to the project staff: Monica Feit, study director; Joshua Joseph, associate program officer; Jon Sanders, program associate; Karen Anderson, senior program officer; Sarah Isquick, Christine Mirzayan Science and Technology Policy Graduate Fellow, fall 2010; and Rick Erdtmann, board director. The committee could not have done its work without the outstanding support and guidance provided by these individuals. It is the committee’s hope that this report will not only assist NIH in its goal of promoting the nation’s health through research, but also advance the public’s understanding about the health of lesbian, gay, bisexual, and transgender people. Robert Graham, Chair Committee on Lesbian, Gay, Bisexual, and Transgender Health Issues and Research Gaps and Opportunities
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The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding Contents ACRONYMS AND ABBREVIATIONS xvii SUMMARY 1 Study Approach, 2 Context for Understanding LGBT Health, 2 Challenges to Conducting Research on LGBT Populations, 3 Health Status Over the Life Course, 4 Recommendations, 6 1 INTRODUCTION 11 The LGBT Community, 11 Statement of Task and Study Scope, 16 Study Approach, 18 Report Organization, 23 References, 23 2 CONTEXT FOR LGBT HEALTH STATUS IN THE UNITED STATES 25 Defining Gender Identity, Gender Expression, and Sexual Orientation, 25 Historical Perspective, 32 A Demographic Overview of LGBT Populations in the United States, 52 Barriers to Accessing Health Care, 61 The Case of HIV/AIDS, 67 Summary of Key Findings and Research Opportunities, 74 References, 75
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The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding 3 CONDUCTING RESEARCH ON THE HEALTH STATUS OF LGBT POPULATIONS 89 Research Challenges, 89 Research Methods, 96 Data Sources, 122 Best-Practices Principles Associated with Sample Survey and Research Studies, 123 Summary of Key Findings and Research Opportunities, 129 References, 132 4 CHILDHOOD/ADOLESCENCE 141 Development of Sexual Orientation and Gender Identity, 142 Mental Health Status, 146 Physical Health Status, 153 Risk and Protective Factors, 157 Health Services, 166 Contextual Influences, 167 Summary of Key Findings and Research Opportunities, 170 References, 173 5 EARLY/MIDDLE ADULTHOOD 185 Development of Sexual Orientation and Gender Identity, 186 Mental Health Status, 189 Physical Health Status, 202 Risk and Protective Factors, 211 Health Services, 222 Contextual Influences, 227 Summary of Key Findings and Research Opportunities, 231 References, 236 6 LATER ADULTHOOD 251 Development of Sexual Orientation and Gender Identity, 253 Mental Health Status, 256 Physical Health Status, 259 Risk and Protective Factors, 268 Health Services, 273 Contextual Influences, 276 Summary of Key Findings and Research Opportunities, 281 References, 284
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The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding 7 RECOMMENDATIONS 293 Research Agenda, 293 Data Collection, 299 Methodological Research, 303 Research Training, 304 Policy on Research Participation, 305 APPENDIXES A Study Activities 307 B Literature Review 313 C Glossary 317 D Biosketches of Committee Members and Staff 321 INDEX 333
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The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding Tables, Figures, and Boxes TABLES 2-1 Estimated Percentage of People by Sexual Orientation and Behavior from Selected Sample Surveys, 55 3-1 Sources of Nonsampling Error in Survey Research, 112 3-2 Recurring Federally Funded Surveys That Include LGB Measures, 124 7-1 Research Opportunities for Studying Lesbian, Gay, Bisexual, and Transgender Health Across the Life Course, 300 FIGURES S-1 Research agenda, 6 2-1 Discretionary funding for HIV/AIDS by the Department of Health and Human Services in thousands of dollars, 72 2-2 Estimated number of new HIV infections by race/ethnicity among men who have sex with men, 73 3-1 Publications in LGBT health indexed in PubMed, 127 7-1 Research agenda, 294
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The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding BOXES 1-1 Statement of Task, 17 1-2 A Note on Terminology, 18 3-1 Examples of Probability Sample Studies with Sexual Orientation Measures, 100 3-2 Examples of State-Level Probability Sample Studies with LGBT Measures, 102 3-3 Drawing an Inference from Census Data, 103 3-4 Examples of the Use of Nonprobability Sample Surveys to Address Transgender Health, 110 3-5 Examples of Longitudinal Cohort Studies, 118 4-1 Criteria for Diagnosis of Childhood Gender Identity Disorder, 152
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The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding Acronyms and Abbreviations AAPOR American Association for Public Opinion Research ACASI audio computer-assisted self-interview AIDS acquired immune deficiency syndrome BMI body mass index BRFSS Behavioral Risk Factor Surveillance System CDC Centers for Disease Control and Prevention CHIS California Health Interview Survey DEBI Diffusion of Effective Behavioral Interventions DOMA Defense of Marriage Act DSM Diagnostic and Statistical Manual of Mental Disorders FBI Federal Bureau of Investigation FDA U.S. Food and Drug Administration GIDC gender identity disorder of childhood GLMA Gay and Lesbian Medical Association GnRH gonadotropin-releasing hormone GSI General Severity Index GSS General Social Survey GUTS Growing Up Today Study HIV human immunodeficiency virus
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The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding HPV human papillomavirus HRT hormone replacement therapy IOM Institute of Medicine LGB lesbian, gay, and bisexual LGBT lesbian, gay, bisexual, and transgender MA BRFSS Massachusetts Behavioral Risk Factor Surveillance System MIDUS Midlife Development in the United States NAS National Academy of Sciences NCAVP National Coalition of Anti-Violence Programs NCS National Comorbidity Survey NESARC National Epidemiologic Survey on Alcohol and Related Conditions NHANES National Health and Nutrition Examination Survey NHBS National HIV Behavioral Survey NHIS National Health Interview Survey NHS Nurses’ Health Study NHSDA National Household Survey of Drug Abuse NHSLS National Health and Social Life Survey NIH National Institutes of Health NLHCS National Lesbian Health Care Survey NNHS National Nurses Health Survey NORC National Opinion Research Center NSFG National Survey of Family Growth NSHAP National Social Life, Health, and Aging Project NSSHB National Survey of Sexual Health and Behavior NTDS National Transgender Discrimination Survey RCT randomized controlled trial STD sexually transmitted disease STI sexually transmitted infection THIS Transgender Health Initiative Survey VDH Virginia Department of Health WPATH World Professional Association for Transgender Health