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Lesbian HealthCurrent 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
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
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Copyright 1999 by the National Academy of Sciences. All rights reserved.
Printed in the United States of America
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COMMITTEE ON LESBIAN HEALTH RESEARCH PRIORITIESANN 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 StaffANDREA 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 EditorFLORENCE POILLON
Health Sciences Section StaffCHARLES 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.
ReviewersThis 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.
PrefaceWomen'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 womenlesbianshave 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, researcherswho were often lesbians themselvesbegan 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 expertiseour 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 individualsoften on short noticewere 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 Carrie 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.
REFERENCES
Contents
TABLES, FIGURES, AND BOXES
Acronyms
Executive SummaryDespite growing attention to research on women's health over the past decade, the health problems of some subgroups of women have continued to receive relatively little attention. Lesbians are one such subgroup. Although the body of research on lesbian health is growing, much of the research to date has methodological limitations, such as the lack of appropriate comparison groups, that make it difficult to draw clear conclusions about the health status and health risks of this group of women. The Institute of Medicine (IOM) Committee on Lesbian Health Research Priorities was convened in July 1997 to: 1. assess the strength of the science base regarding the physical and mental health of lesbians, 2. review the methodological challenges involved in conducting research on lesbian health, and 3. suggest areas for research attention. The study was funded by the National Institutes of Health (NIH) Office of Research on Women's Health, with the Centers for Disease Control and Prevention (CDC) also contributing funding through the NIH. A primary charge of the committee was to organize and convene an invitational workshop to examine these issues. The workshop, held in October 1997, focused on the challenges involved in designing and conducting research on lesbian health, some of the contextual issues that can make it more difficult to conduct such research, and lesbians' risk for particular health conditions including cancer, mental health problems, substance abuse, HIV infection, and sexually transmitted diseases. Lesbians' use of and access to health care services were also discussed. The workshop involved 21 invited speakers, public testimony from more than a dozen presenters, and approximately 50 interested members of the public who also participated in the discussion. This report is based on the committee's deliberations and reflects its review and evaluation of the scientific literature on lesbian health and of information presented at the workshop. The committee's conclusions and recommendations, which are outlined here, are presented in detail in the full report. It is important to recognize that this is a workshop-study report with recommendations and that the committee's information gathering and deliberations were thus limited compared to those of a full IOM study. The committee identified several important reasons for directing attention to the study of lesbian health issues:
FIGURE 1
Interrelation of the different dimensions of same-sex orientation (current desire, current or past same-sex behavior, current identity as homosexual or bisexual) for 150 women (8.6% of the total 1,749) who report any adult same-sex orientation. SOURCE: Laumann et al. (1994).
The committee spent a significant amount of time discussing how to define lesbian sexual orientation. There is no standard definition of what constitutes a "lesbian." In general, sexual orientation is most often described as including behavioral, affective (i.e., desire or attraction), and cognitive (i.e., identity) dimensions that occur along continua (Laumann et al., 1994). Women may exhibit differing degrees of same-sex sexual behavior, desire, or identity, in combinations that vary from person to person. Among the 150 women in Laumann et al. (1994) who claimed at least one of the three dimensions of same-sex orientation (current same-sex desire, current identity as homosexual or bisexual, or same-sex behavior since age 18), Figure 1 shows that almost 60% of them stated desire only, and only 15.3% of them stated all three dimensions of same-sex orientation. It is important to note that views of sexual identity and sexual behavior can vary significantly across cultures and among racial and ethnic groups, so it should not be assumed that a lesbian sexual orientation or identity is the same for lesbians of different racial, ethnic, or cultural backgrounds. In particular, it should not be assumed that racial and ethnic minority cultures share views of lesbian sexual orientation identical with those of the dominant culture. The committee notes that there is a dearth of research on racial and ethnic minority lesbians. For the purposes of this report, the committee agreed that it should focus on women who have sex with or primary emotional partnerships with women. Because so little research is available about bisexual women and because the degree to which the results of research on lesbians also apply to bisexual women is unknown, the committee considers bisexual women to be a different category or subgroup of women than lesbians for the purposes of this report. The committee strongly believes that there is no one "right" way to define "lesbian." Thus, a researcher designing a study on lesbian health should develop measures that gather information about the aspects of lesbian orientation that are relevant to the specific project at hand. Adopting this approach does not avoid the issue of establishing a lesbian definition. Rather, it builds on the need to accept the complexity of sexual orientation and the social context in which it is embedded. In essence, "lesbian" should be defined to reflect the needs of specific research studies, interventions, or programs of care within generally accepted conceptual boundaries, with a recognition of the three dimensions through which sexual orientation is most often defined: behavior, desire, and identity (see Figure 1). The committee examined lesbian health from several different perspectives. When examined together, these various approaches can provide a more complete picture of the complexity involved in looking at lesbian health:
Conducting research on lesbian health presents numerous challenges. First, lesbians are a population subgroup without a standard definition, and partly because of this, they are a difficult subgroup to readily identify for study. Second, lesbians constitute a small percentage of women and, in addition, are dispersed throughout the population of women, making it difficult and expensive to obtain a population based sample (or probability sample) of lesbians. Third, many in the lesbian community distrust medical research and researchers, which may result in the failure of lesbians to disclose their lesbian orientation in research studies. Fourth, there has been little funding support for research on lesbian health topics. It is not surprising, then, that methodologically rigorous large-scale studies are lacking in this area. Although the body of research on lesbian health is growing and there are now a number of well-designed, methodologically sophisticated studies examining these issues, methodological limitations are consistently found in much of the research on lesbian health:
Although it can be particularly challenging to design and conduct research on lesbian health for a number of reasons (e.g., the difficulty in identifying a lesbian population subgroup from which to select a probability sample), several strategies can be used to increase the quality of research. The use of computer-assisted interviews can increase disclosure of information, and different sampling techniques can be used to produce more representative study samples. In addition to the methodological challenges to conducting research on lesbian health, the committee identified several contextual factors that researchers must also overcome. For example, researchers studying lesbian health may experience discrimination because of the stigma associated with this population. There are relatively few researchers working on lesbian-related issues; thus, researchers can feel isolated, and students conducting lesbian-related research may lack mentors. In addition, funding for research on lesbian health has been limited and difficulties have been reported in publishing research findings. Researchers must also establish ties with the lesbian community in order to conduct studies. Pervasive stereotypes about lesbian life, coupled with the limited visibility of this community, create the risk that researchers who fail to familiarize themselves with the community will misinterpret or misunderstand the implications of their results. This undermines the willingness of the community to provide information freely. Research on controversial or sensitive topics such as sexual behavior, sexual orientation, or drug use is usually politically sensitive, and researchers interested in doing wide-scale stud ies of sexual behaviors often face political challenges to the conduct of such research. At the workshop, several possible political responses were identified that could negatively affect the future of research on lesbian health, including legislative denial of the existence of lesbians or failure to recognize lesbian health issues. Ethical issues are also extremely important to lesbian health research. Participating in research brings potential risks for lesbians both as individual research participants and as lesbians. For example, an individual's lesbian sexual orientation might be disclosed to others (e.g., through shared use of databases if these data include identifiers), and research information could be used in some way to discriminate against or stigmatize lesbians in general. The increased need to protect confidentiality arises both because lesbians are often stigmatized and because some same-sex behaviors are illegal in some jurisdictions. The committee acknowledges these potential risks, but it also believes that significant benefits can accrue to all women from studies of lesbian health, provided that individual rights are carefully protected. These benefits include identifying areas of increased risk that need attention and identifying gaps in health care services, as well as increasing understanding of the negative impact of homophobia on health. CONCLUSIONSFollowing its broad review of what is known about lesbian health and the factors that influ ence it, the committee reached three major conclusions: Conclusion 1: Additional data are required to determine if lesbians may be at higher risk for certain health problems. Further research is needed to determine the absolute and relative magnitudes of such risk and to better understand the risk and protective factors that influence lesbian health. Conclusion 2: There are significant barriers to conducting research on lesbian health, including lack of funding, which have limited the development of more sophisticated studies, data analyses, and the publication of results. Conclusion 3: Research on lesbian health, especially the development of more sophisticated methodologies to conduct such research, will help advance scientific knowledge that is also of benefit to other population groups, including rare or hard-to-identify population subgroups and women in general. The committee identified several gaps and priorities for additional research, which follow: Research Gaps and Priorities
RECOMMENDATIONSThe committee makes eight recommendations for improving the knowledge base on lesbian health. Recommendation 1: Public and private funding to support research on lesbian health needs to be increased in order to enhance knowledge about risks to health and protective factors, to improve methodologies for gathering information about lesbian health, to increase understanding of the diversity of the lesbian population, and to improve lesbians' access to mental and physical health care services. A long-term federal funding commitment to lesbian health research is needed that is responsive to the ongoing needs of the lesbian population. Foundations and other government entities are also urged to fund research on lesbian health. Recommendation 2: Methodological research needs to be funded and conducted to improve measurement of the various dimensions of lesbian sexual orientation. Methodological research is needed to refine the techniques available to study the full picture of lesbian health, including women of different racial and ethnic backgrounds, social classes, ages and birth cohorts, religious affiliations, and geographical locations. Although existing questions on surveys about sexual orientation are adequate for many research purposes, further work is required to improve their validity. Research is needed to determine the best ways to ask questions about lesbian sexual orientation, including the use of alternative wording and innovative technologies so as to obtain maximum disclosure. Methodological research is also needed to explore the feasibility of using different sampling techniques, by themselves or in combination, for rare or hard-to-identify population subgroups, in order to obtain a probability sample of the lesbian population subgroup. Recommendation 3: Researchers should routinely consider including questions about sexual orientation on data collection forms in relevant studies in the behavioral and biomedical sciences to capture the full range of female experience and to increase knowledge about associations between sexual orientation and health status. Current methodologies allow the collection of information on sexual orientation with sufficient precision to discover important relationships between orientation and other factors. Further, such questions have been used successfully in a number of research areas with different populations. Consideration should be given to including questions about sexual identity, behavior, and attraction or desire in ongoing and future federal studies, assessing multiple dimensions whenever possible and addressing the rationale for including each question. Such studies would include, for example, those in which an association between sexual orientation and health can be hypothesized or in which discrimination based on sexual orientation may result in differential access to health care services. Pilot studies are needed to test the feasibility of including these types of questions, with careful attention given to protecting confidentiality and assessing response bias and its impact on disclosure. Researchers submitting proposals for federally funded research, whether unsolicited R01s, responses to Program Announcements, or responses to Requests for Proposals, should routinely evaluate whether or not they should include sexual orientation questions as they would other sociodemographic questions in their protocols. NIH review groups should be encouraged to consider whether or not sexual orientation should be assessed in proposed studies, and recommend inclusion of this field when it would strengthen the value of the results. Recommendation 4: Researchers studying lesbian health should consider the full range of racial, ethnic, and socioeconomic diversity among lesbians when designing studies on lesbian health; strive to include members of the lesbian study population in the development and conduct of research; and give special attention to protecting the confidentiality and privacy of the study population. Because there are wide social and cultural differences in the health-related stressors, risks, and protective factors to which lesbians are exposed in different social and cultural milieus, the committee recommends that studies of lesbian health include the full range of variations in race and ethnicity, social class, age, and socioeconomic status. Given the current lack of knowledge about lesbian health issues, it is imperative that researchers strive to involve members of the lesbian population being studied in the development, conduct, and dissemination of research on lesbian health. This is particularly important as a way of identifying lesbians for inclusion in research samples and securing their participation. As noted previously, the committee also urges that special attention be given to ensuring both confidentiality and the protection of human subjects in lesbian health research. Recommendation 5: A large-scale probability survey should be funded to determine the range of expression of sexual orientation among all women and the prevalence of various risk and protective factors for health by sexual orientation. To date no large scale probability studies on health have been conducted that collect information on sexual orientation. Conducting such a study would greatly increase knowledge about and understanding of sexual orientation in women, and improve understanding of the relationships among the dimensions of sexual orientation and health status and health behaviors. Recommendation 6: Conferences should be held on an ongoing basis to disseminate information about the conduct and results of research on lesbian health, including the protection of human subjects. NIH and CDC should support periodic multidisciplinary conferences on lesbian health research methods and results. The first of these conferences should take place within the next two years, with subsequent meetings to occur on a regular basis. Given that the field of lesbian health research is still in its infancy and many researchers and members of institutional review boards are not aware of the ethical issues that need to be considered in the conduct of this research, the committee further urges that NIH in collaboration with CDC sponsor a conference on the ethical issues involved in conducting research on lesbian health, including issues related to privacy and confidentiality, future use of data, recruitment of subjects, and informed consent. This conference would be designed to inform members of institutional review boards, researchers, and members of federal review panels and should involve representatives from the lesbian community. Recommendation 7: Federal agencies, including the National Institutes of Health and the Centers for Disease Control and Prevention, foundations, health professional associations, and academic institutions should develop and support mechanisms for broadly disseminating information and knowledge about lesbian health to health care providers, researchers, and the public. A clearinghouse for research on lesbian health should be established to make both published and unpublished research (e.g., conference papers) available to researchers and the public; this information should be made available on-line as well. Training programs on lesbian health and the special issues involved in working with lesbians should be developed for a wide range of providers, including pediatricians, psychologists and psychiatrists, substance abuse counselors and other treatment staff, general practitioners, obstetricians and gynecologists, and social workers. The committee also urges that health and mental health professional organizations feature discussions of lesbian health and the conduct of lesbian health research at their annual meetings. Recommendation 8: The committee encourages development of strategies to train researchers in conducting lesbian health research at both the predoctoral and the postdoctoral levels. Surveys of lesbians in academic settings and of graduate students indicate that individuals interested in conducting research on issues affecting lesbians face numerous barriers. In addition to the personal stigma they sometimes experience, it can be difficult to find mentors or sponsors and the funding needed to conduct the research. The availability of training funds would increase the ability of young researchers to pursue careers in lesbian health research and would enhance their skills in managing the challenges of conducting research in this area. A variety of strategies might be used to increase training opportunities for lesbian health researchers--for example, including lesbian health in the scope of pre- and postdoctoral programs in all health professions. In addition, NIH institutes should consider targeting training grants on lesbian health or including lesbian research in the scope of existing training grants. Foundations and academic institutions should also consider providing training support in this area.
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