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--> Lesbian Health Current Assessment and Directions for the Future Andrea L. Solarz, Editor Committee on Lesbian Health Research Priorities Neuroscience and Behavioral Health Program 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, DC 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. This study was supported by Task Order No. 27, under Contract No. N01-OD-4-2139 from the Office of Research on Women's Health at the National Institutes of Health. Library of Congress Cataloging-in-Publication Data Lesbian health : current assessment and directions for the future / Andrea L. Solarz, editor ; Committee on Lesbian Health Research Priorities, Neuroscience and Behavioral Health Program [and] Health Sciences Policy Program, Health Sciences Section, Institute of Medicine. p. cm. Report based on a workshop held in Oct. 1997. Includes bibliographical references (p. ) and index. ISBN 0-309-06093-1 (case) ISBN 0-309-06567-4 (perfect) 1. Lesbians—Health and hygiene. 2. Lesbians—Health and hygiene—Government policy—United States. I. Solarz, Andrea L. II. Institute of Medicine (U.S.). Committee on Lesbian Health Research Priorities. RA564.87 .L46 1999 613′.086′643—dc21 99-6101 Additional copies of this report are available for sale from the National Academy Press, 2101 Constitution Avenue, N.W., Lock Box 285, Washington, DC 20055. Call (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area), or visit the NAP on-line bookstore 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 logotype 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 LESBIAN HEALTH RESEARCH PRIORITIES ANN W. BURGESS (Chair), Professor, University of Pennsylvania School of Nursing JUDITH BRADFORD,* Director, Survey and Evaluation Research Laboratory, Virginia Commonwealth University DONNA JEAN BROGAN, Professor, Biostatistics Department, Rollins School of Public Health, Emory University SAMUEL R. FRIEDMAN, Senior Research Fellow, National Development and Research Institutes, Inc., New York CYNTHIA A. GÓMEZ, Assistant Adjunct Professor, Center for AIDS Prevention Studies, University of California at San Francisco IRIS F. LITT, Professor of Pediatrics and Director, Division of Adolescent Medicine, Stanford University School of Medicine BRUCE S. McEWEN, Professor and Laboratory Head, Laboratory of Endocrinology, Rockefeller University LARRY NORTON, Chief, Breast Cancer Medicine, Memorial Sloan-Kettering Cancer Center, New York GLORIA E. SARTO, Professor, Department of Obstetrics and Gynecology, University of Wisconsin Hospital, Madison Institute of Medicine Study Staff ANDREA L. SOLARZ, Study Director (until July 1998) CARRIE E. INGALLS, Research Associate (until August 1997) THOMAS J. WETTERHAN, Research Assistant (until September 1998) AMELIA B. MATHIS, Project Assistant CHERYL MITCHELL, Administrative Assistant (until June 1998) CONSTANCE M. PECHURA, Director, Neuroscience and Behavioral Health Program (until May 1998) Copy Editor FLORENCE POILLON Health Sciences Section Staff CHARLES H. EVANS, Jr., Head, Health Sciences Section LINDA DEPUGH, Administrative Assistant CARLOS GABRIEL, Financial Associate ANDREW POPE, Director, Health Sciences Policy Program VALERIE SETLOW, Director, Division of Health Sciences Policy (until October 1997) * Resigned December 10, 1998.
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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: GEORGE J. ANNAS, Boston University School of Public Health RONALD W. ESTABROOK, University of Texas Southwestern Medical Center at Dallas JOHN FLETCHER, University of Virginia (retired) LUELLA KLEIN, Emory University School of Medicine ED LAUMANN, University of Chicago VICKIE. MAYS, University of California, Los Angeles HENRY W. RIECKEN, University of Pennsylvania
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--> JEROME STRAUSS, University of Pennsylvania Medical Center JOYCELYN WHITE, Legacy Good Samaritan Hospital 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 Women's health is a relatively new focus of research study. Theories about human health in general have traditionally been developed from studies of men. In recent years, research has expanded to include an explicit focus on women's health, as well as the inclusion of women in gender-neutral studies to ensure that findings may be applied broadly and appropriately. During the past two decades the unique health needs of a subgroup of women—lesbians—have been identified for study. Until this time, avoidance and silence dominated both professional and societal attitudes toward lesbian health needs. Lesbians are found among all subpopulations of women. Lesbians are as diverse as the general population of all women, and they are represented in all racial and ethnic groups, all socioeconomic strata, and all ages. There is no single type of family, community, culture, or demographic category characteristic of lesbian women. Research about lesbians has been conducted in a systematic fashion only since the 1950s. Tully (1995) has traced the historical development of the lesbian research literature over the past four decades. Initially, research focused on "lesbian etiology," or the factors that would cause a woman to be a lesbian. The next major phase of research, from the 1960s to the 1980s, explored psychological functioning of lesbians, typically by comparing nonclinical samples of lesbian and heterosexual women to de-
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--> termine whether being lesbian was a form of psychopathology. During the 1970s, researchers—who were often lesbians themselves—began to focus on lesbians as psychologically healthy individuals and to study their social functioning. Research since the 1980s has begun to examine issues related to the development of lesbians across their life spans. Until the 1980s, few health care professionals discussed the similarities or differences between lesbians and other women. It was not until 1985 that a high level of interest in lesbian health emerged coincident with the design and implementation of the National Lesbian Health Care Survey (Bradford and Ryan, 1988). This survey provided a systematic approach to identify the health needs and concerns of lesbians. It also sought to underline the importance of studying lesbians and their health needs in order to improve health care delivery to them. Since then, other scholars and researchers have focused their efforts on this aspect of women's health. As a result, a body of knowledge has begun to develop. Although there had been efforts to address issues specific to lesbian health over the past several decades, federal action was limited. In 1993, a meeting was held between representatives of national and local lesbian and gay health organizations and Secretary of Health and Human Services Donna Shalala, during which lesbian health activists asked that the Department of Health and Human Services (DHHS) increase its attention to, and better meet the health needs of, lesbians, gay men, bisexuals, and transgender individuals (Plumb, 1997). Subsequently, in February 1994 a Lesbian Health Roundtable, involving more than 60 lesbian and bisexual women's health activists from around the country, was held in Washington, D.C., to formalize the recommendations to DHHS and to establish a lesbian health agenda. The agenda subsequently presented to DHHS had as a priority the expansion of research on lesbian health issues. Several federal initiatives emerged out of these meetings. In 1994, supplemental financing was provided for researchers funded by the National Institutes of Health (NIH) to support the inclusion of lesbian and bisexual women in ongoing studies, and questions about sexual behavior were added to the NIH Women's Health Initiative (WHI), a large longitudinal study and randomized clinical trial of women's health. Also as a result of these meetings, the NIH Office of Research on Women's Health requested that the Institute of Medicine (IOM) conduct a workshop to
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--> examine the need for future research on the health of lesbians, focusing on existing data and evaluating research methodologies. This workshop study is the result of that request. Each section of this report presents ideas and perspectives the committee hopes will energize health professionals, researchers, policy makers, and others interested in lesbian health to face the challenges and opportunities of the new millennium. Acknowledgments: This report reflects the dedication and thoughtfulness of a great many people. Each member of the Committee on Lesbian Health Research Priorities contributed to the deliberations by leading discussions, providing background references, and reading and commenting on report drafts. However, many other people also contributed to the project in numerous ways. The committee especially thanks the workshop participants for sharing their expertise—our work was enhanced by their presentations and their comments (see Appendixes B and C for the workshop agenda and participants, respectively). The committee heard testimony at the workshop and received written comments from a number of individuals and organizations (see Appendixes A and D for a selected bibliography and a list of those who provided testimony, respectively). This information was extremely useful in expanding our understanding of the issues and of the concerns of the lesbian health community. Numerous people also contributed background materials to the committee. We are especially grateful to Marjorie Plumb, formerly with the National Gay and Lesbian Medical Association, and Suzanne Haynes, now with the DHHS Office of Women's Health, for the materials they made available, and to Devi O'Neill for the notebook full of medical literature on lesbian health that she gave to the committee. Janine Cogan and Clinton Anderson of the American Psychological Association and Tracey St. Pierre of the Human Rights Campaign were also quite helpful in providing resources and information. Several individuals—often on short notice—were especially helpful in sharing their unpublished research or other background materials with the committee, including Deborah Bybee, Charlotte Patterson, and Deborah Bowen. The committee also appreciates the help that Marj Plumb provided as liaison to the lesbian community. In addition, we are grateful to Julie Honnold at the Survey and Evaluation Research Laboratory (SERL) and the Department of Soci-
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--> ology and Anthropology at Virginia Commonwealth University for her work on developing the sexual orientation cube data presented in Chapter 1, as well as to Arnold Overby, the computer network administrator at SERL, for his help with this task. The committee is indebted to the IOM staff who worked on the project: Study Director Andrea Solarz, for her patience and skill in translating the workshop proceedings and committee discussions into a report; Constance Pechura who, during her tenure as director of the Division of Neuroscience and Behavioral Health, shared her broad understanding of the committee process with us; Research Assistant Thomas Wetterhan, who provided invaluable help in locating background materials, checking references, and preparing the draft document for publication; Project Assistant Amelia Mathis, for her hard work in setting up meetings, arranging travel and lodging, and preparing agenda materials; and Research Associate Came Ingalls who was especially helpful at the initial stages of the project in locating background materials. Finally, the committee is grateful for the support and encouragement of the sponsors of the workshop study and for the interest of Vivian Pinn, Director of the NIH Office of Research on Women's Health, and of program officers Joyce Rudick, also from the Office of Research on Women's Health, and Wanda Jones, formerly associate director for Women's Health at the Centers for Disease Control and Prevention and now Deputy Assistant Secretary for Women's Health, DHHS. ANN BURGESS, D.N.SC. CHAIR References Bradford J, and B, Ryan C. 1988. The National Lesbian Health Care Survey: Final Report. Washington, DC: National Lesbian and Gay Health Foundation. Plumb M. 1997. Statement of the Gay and Lesbian Medical Association to the IOM Committee on Lesbian Health Research Priorities Regarding Community Perspective, Washington, DC. Tully CT. 1995. In sickness and in health: Forty years of research on lesbians. In: Tully CT, ed. Lesbian Social Services: Research Issues. New York: Harrington Park Press/Haworth Press, Inc. Pp. 1-18.
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--> Contents Acronyms xv Executive Summary 1 1 Introduction 17 Study Process and Report Organization, 17 Why Study Lesbian Health? 20 Defining ''Lesbian," 21 2 Lesbian Health Status and Health Risks 35 Framework 1: Lesbian Health in the Larger Context, 35 Framework 2: A Developmental Perspective on Lesbian Health, 46 Framework 3: A Look at Specific Health Concerns for Lesbians, 54 Suggested Areas for Research, 84 3 Methodological Challenges in Conducting Research on Lesbian Health 97 Defining the Population, 100 Instrumentation, 101 Disclosure of Sexual Orientation, 114 Sampling, 117
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--> Adding Sexual Orientation Questions to Existing Studies, 126 Areas for Further Methodological Research in Studying Lesbian Health, 129 4 Contextual Barriers to Conducting Research on Lesbian Health 135 Barriers to Conducting Research, 135 The Need for Researcher—Community Ties, 145 Political and Legislative Barriers to Funding, 148 Ethical Considerations, 150 5 Conclusions and Recommendations 155 Conclusions, 155 Recommendations, 158 Appendixes A Selected Bibliography on Lesbian Health Research, 165 B Workshop Agenda, 207 C Workshop Participants, 215 D People and Organizations Submitting Testimony, 223 Index 227 Tables, Figures, and Boxes Tables 1.1 Selected Influences of Religious Heritage on Views of Homosexuality in East Asian Cultures, 25 1.2 Percentage of Women Reporting Various Dimensions of Same-Sex (SS) Sexuality by Selected Social and Demographic Variables, 28 1.3 Sexual Orientation in Adult Women: Appeal and Sexual Behavior by Identity, 32
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--> 2.1 Summary of Legal Status of Lesbians and Gay Men in the United States as of May 1998, 38 2.2 Leading Causes of Death and Age-Adjusted Death Rates (per 100,000) for Women, United States, 1995, 47 2.3 Cancer Incidence and Number of Deaths by Selected Sites for Women, United States, 1997, 47 2.4 Selected Risk Factors for Cancer in Women in General, 56 2.5 Sexual Practices in Selected Samples of Lesbians, 74 3.1 Summary of Measures of Sexual Orientation Used in Studies of Lesbian Health 102 3.2 Operational Methods of Identifying Subjects in Public Health Research, 1990-1992, 114 4.1 Lesbian Health Grant Supplements Funded by NIH Through the National Cancer Institute Interagency Agreement, 141 Figures 1 Interrelation of the different dimensions of same-sex orientation, 4 1.1 Interrelation of the different dimensions of same-sex orientation, 30 1.2 Dimensions of sexual orientation: appeal by sexual behavior and identity, 31 Boxes 2.1 Physiological Response to Stress, 60 2.2 Suggested Areas for Further Research on Lesbian Health, 85 4.1 CDC Research and Programs That Include Lesbians, 1997, 142
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--> Acronyms AIDS Acquired immune deficiency syndrome audio-CASI Audio computer-assisted self-interview BMI Body mass index BV Bacterial vaginosis CARDIA Coronary Artery Risk Development in Young Adults CDC Centers for Disease Control and Prevention DHHS Department of Health and Human Services FBI Federal Bureau of Investigation HIV Human immunodeficiency virus HPV Human papillomavirus ICD International Classification of Diseases IDU Injection drug user IOM Institute of Medicine MLHS Michigan Lesbian Health Survey NHANES National Health and Nutrition Examination Survey NHIS National Health Interview Survey NHS-II Nurses' Health Study II NHSDA National Household Survey on Drug Abuse NHSLS National Health and Social Life Survey NIAID National Institute of Allergy and Infectious Diseases NICHD National Institute of Child Health and Human Development NIDA National Institute on Drug Abuse NIH National Institutes of Health NIMH National Institute of Mental Health NLHCS National Lesbian Health Care Survey< NORC National Opinion Research Center SAMHSA Substance Abuse and Mental Health Services Administration SERL Survey and Evaluation Research Laboratory SES Socioeconomic status STD Sexually transmitted disease T-ACASI Telephone audio computer-assisted self-interview WHI Women's Health Initiative WSW Women who have sex with women YWCA Young Women's Christian Association
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