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 http://national-academies.org or http://iom.edu. A committee roster follows.
Contacts:
Christine Stencel, Senior Media Relations Officer
Luwam Yeibio, Media Relations Assistant
Office of News and Public Information
202-334-2138; e-mail news@nas.edu
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 http://www.nap.edu or http://www.iom.edu/lgbthealth. Reporters may obtain a copy from the Office of News and Public Information (contacts listed above).
INSTITUTE OF MEDICINE
Board on Health Sciences Policy
and
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
Chair
Department of Family Medicine
University of Cincinnati College of Medicine
Cincinnati
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
Baltimore
Walter O. Bockting, Ph.D.
Associate Professor
Program in Human Sexuality
Department of Family Medicine and Community Health
University of Minnesota Medical School
Minneapolis
Judith Bradford, Ph.D.
Co-Chair
The Fenway Institute; and
Director
Center for Population Research in Lesbian, Gay, Bisexual, and
Transgender Health
Boston
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
Director
Adolescent HIV Services
Children's Memorial Hospital
Chicago
Gregory Herek, Ph.D.
Professor
Department of Psychology
University of California
Davis
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
Boston
Charlotte J. Patterson, Ph.D.
Professor
Department of Psychology
University of Virginia
Charlottesville
John L. Peterson, Ph.D.
Professor
Department of Psychology
Georgia State University
Atlanta
Caitlin C. Ryan, Ph.D., M.S.W.
Director
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
Chief
Division of General Pediatrics
Children's Hospital Boston
Boston
Lowell J. Taylor, Ph.D., M.A.
Professor of Economics
Heinz College
Carnegie Mellon University
Pittsburgh
Ruth E. Zambrana, Ph.D.
Professor of Women's Studies, and
Director
Consortium on Race, Gender, and Ethnicity
University of Maryland
College Park
STAFF
Monica N. Feit
Study Director