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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.
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
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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)
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)
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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
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.
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-
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
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-
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.
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.
Tables, Figures, and Boxes
Selected Influences of Religious Heritage on Views of Homosexuality in East Asian Cultures,
Percentage of Women Reporting Various Dimensions of Same-Sex (SS) Sexuality by Selected Social and Demographic Variables,
Sexual Orientation in Adult Women: Appeal and Sexual Behavior by Identity,
Summary of Legal Status of Lesbians and Gay Men in the United States as of May 1998,
Leading Causes of Death and Age-Adjusted Death Rates (per 100,000) for Women, United States, 1995,
Cancer Incidence and Number of Deaths by Selected Sites for Women, United States, 1997,
Selected Risk Factors for Cancer in Women in General,
Sexual Practices in Selected Samples of Lesbians,
Summary of Measures of Sexual Orientation Used in Studies of Lesbian Health
Operational Methods of Identifying Subjects in Public Health Research, 1990-1992,
Lesbian Health Grant Supplements Funded by NIH Through the National Cancer Institute Interagency Agreement,
Interrelation of the different dimensions of same-sex orientation,
Interrelation of the different dimensions of same-sex orientation,
Dimensions of sexual orientation: appeal by sexual behavior and identity,
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Acquired immune deficiency syndrome
Audio computer-assisted self-interview
Body mass index
Coronary Artery Risk Development in Young Adults
Centers for Disease Control and Prevention
Department of Health and Human Services
Federal Bureau of Investigation
Human immunodeficiency virus
International Classification of Diseases
Injection drug user
Institute of Medicine
Michigan Lesbian Health Survey
National Health and Nutrition Examination Survey
National Health Interview Survey
Nurses' Health Study II
National Household Survey on Drug Abuse
National Health and Social Life Survey
National Institute of Allergy and Infectious Diseases
National Institute of Child Health and Human Development
National Institute on Drug Abuse
National Institutes of Health
National Institute of Mental Health
National Lesbian Health Care Survey<
National Opinion Research Center
Substance Abuse and Mental Health Services Administration
Survey and Evaluation Research Laboratory
Sexually transmitted disease
Telephone audio computer-assisted self-interview
Women's Health Initiative
Women who have sex with women
Young Women's Christian Association
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