Date:  March 31, 2011




Researchers Need to Engage Lesbian, Gay, Bisexual, And Transgender Populations in Health Studies


WASHINGTON — Researchers need to proactively engage lesbian, gay, bisexual, and transgender people in health studies and collect data on these populations to identify and better understand health conditions that affect them, says a new report from the Institute of Medicine.  The scarcity of research yields an incomplete picture of LGBT health status and needs, which is further fragmented by the tendency to treat sexual and gender minorities as a single homogeneous group, said the committee that wrote the report.  


The report provides a thorough compilation of what is known about the health of each of these groups at different stages of life and outlines an agenda for the research and data collection necessary to form a fuller understanding.


"It's easy to assume that because we are all humans, gender, race, or other characteristics of study participants shouldn't matter in health research, but they certainly do," said committee chair Robert Graham, professor of family medicine and public health sciences and Robert and Myfanwy Smith Chair, department of family medicine, University of Cincinnati College of Medicine, Cincinnati.  "It was only when researchers made deliberate efforts to engage women and racial and ethnic minorities in studies that we discovered differences in how some diseases occur in and affect specific populations.  Routine collection of information on race and ethnicity has expanded our understanding of conditions that are more prevalent among various groups or that affect them differently.  We should strive for the same attention to and engagement of sexual and gender minorities in health research."


Because LGBT individuals make up a minority of the population, researchers face challenges in recruiting sufficient numbers of these individuals in general population surveys to yield meaningful data.  Stigma experienced by gender and sexual minorities can make them reluctant to disclose their orientation, worsening the problem.  Moreover, it is difficult to synthesize data about these groups when studies and surveys use a variety of ways to define them. 


Because demographic data provide the foundation for understanding any population's status and needs, federally funded surveys should proactively collect data on sexual orientation and gender identity, just as they routinely gather information on race and ethnicity, the report says.  Information on patients' sexual orientation and gender identity also should be collected in electronic health records, provided that privacy concerns can be satisfactorily addressed, the committee said.  The National Institutes of Health should support the development of standardized measures of sexual orientation and gender identity for use in federal surveys and other means of data collection.


In addition, NIH should provide training opportunities in conducting research with LGBT populations.  Training should engage researchers who are not specifically studying LGBT health issues as well as those who are.  The agency also should use its policy on the inclusion of women and racial and ethnic minorities in clinical research as a model to encourage grant applicants to address how their proposed studies will include or exclude sexual and gender minorities.


The study was sponsored by the National Institutes of Health.  Established in 1970 under the charter of the National Academy of Sciences, the Institute of Medicine provides independent, objective, evidence-based advice to policymakers, health professionals, the private sector, and the public.  The National Academy of Sciences, National Academy of Engineering, Institute of Medicine, and National Research Council make up the National Academies.  For more information, visit or  A committee roster follows.



Christine Stencel, Senior Media Relations Officer

Luwam Yeibio, Media Relations Assistant

Office of News and Public Information

202-334-2138; e-mail


Additional resources:

Report in Brief

Project Website


Pre-publication copies of The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Understanding are available from the National Academies Press; tel. 202-334-3313 or 1-800-624-6242 or on the Internet at or  Reporters may obtain a copy from the Office of News and Public Information (contacts listed above).

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Board on Health Sciences Policy


Board on the Health of Select Populations


Committee on Lesbian, Gay, Bisexual, and Transgender Health Issues and Research Gaps and Opportunities

Robert Graham, M.D. (chair)

Professor and Robert and Myfanwy Smith


Department of Family Medicine

University of Cincinnati College of Medicine


Bobbie A. Berkowitz, Ph.D., R.N., FAAN

Dean and Mary O’Neil Mundinger Professor

Columbia University School of Nursing; and

Senior Vice President

Columbia University Medical Center

New York City

Robert Blum, M.D., M.P.H., Ph.D.
William H. Gates Sr. Professor and Chair
Department of Populations, Family, and Reproductive Health
Johns Hopkins Bloomberg School of Public Health

Walter O. Bockting, Ph.D. 
Associate Professor
Program in Human Sexuality
Department of Family Medicine and Community Health
University of Minnesota Medical School

Judith Bradford, Ph.D. 


The Fenway Institute; and


Center for Population Research in Lesbian, Gay, Bisexual, and   

Transgender Health



Brian de Vries, Ph.D. 
Professor of Gerontology
San Francisco State University
San Francisco


Robert Garofalo, M.D.

Associate Professor of Pediatrics

Feinberg School of Medicine

Northwestern University; and


Adolescent HIV Services

Children’s Memorial Hospital



Gregory Herek, Ph.D.
Department of Psychology
University of California

Elizabeth A. Howell, M.D., MPP
Associate Professor
Departments of Health Evidence and Policy; Obstetrics, Gynecology, and Reproductive Science and Psychiatry Mount Sinai School of Medicine
New York City

Daniel Kasprzyk, Ph.D. 

Vice President and Director

Center for Excellence in Survey Research

National Opinion Research Center at the University of Chicago

Bethesda, Md.

Harvey J. Makadon, M.D. 
Clinical Professor of Medicine
Harvard Medical School; and
Director of Professional Education and Training
The Fenway Institute

Charlotte J. Patterson, Ph.D.
Department of Psychology
University of Virginia

John L. Peterson, Ph.D.
Department of Psychology
Georgia State University

Caitlin C. Ryan, Ph.D., M.S.W. 
Family Acceptance Project
Marian Wright Edelman Institute
San Francisco State University
San Francisco


Mark A. Schuster, M.D., Ph.D., MPP 
William Berenberg Professor of Pediatrics
Harvard Medical School; and
Division of General Pediatrics
Children’s Hospital Boston

Lowell J. Taylor, Ph.D., M.A.

Professor of Economics

Heinz College

Carnegie Mellon University


Ruth E. Zambrana, Ph.D.
Professor of Women’s Studies, and
Consortium on Race, Gender, and Ethnicity
University of Maryland
College Park




Monica N. Feit

Study Director