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 determine 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 Sociology 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

  1. Bradford J, Ryan C. The National Lesbian Health Care Survey: Final Report. Washington, DC: National Lesbian and Gay Health Foundation; 1988.
  2. Plumb M.Statement of the Gay and Lesbian Medical Association to the IOM Committee on Lesbian Health Research Priorities Regarding Community Perspective; Washington, DC. 1997;
  3. Tully C T. In sickness and in health: Forty years of research on lesbians. In: Tully C T, editor. Lesbian Social Services: Research Issues. New York: Harrington Park Press/Haworth Press, Inc.; 1995. pp. 1–18.