Date: March 31, 2011
FOR IMMEDIATE RELEASE
Researchers Need to Engage Lesbian, Gay, Bisexual, And Transgender Populations in Health Studies
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
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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).
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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
Dean and Mary O’Neil Mundinger Professor
Senior Vice President
Robert Blum, M.D., M.P.H., Ph.D.
William H. Gates Sr. Professor and Chair
Department of Populations, Family, and Reproductive Health
Program in Human Sexuality
Department of Family Medicine and Community Health
The Fenway Institute; and
Center for Population Research in Lesbian, Gay, Bisexual, and
Brian de Vries, Ph.D.
Professor of Gerontology
Robert Garofalo, M.D.
Associate Professor of Pediatrics
Northwestern University; and
Adolescent HIV Services
Gregory Herek, Ph.D.
Department of Psychology
Departments of Health Evidence and Policy; Obstetrics, Gynecology, and Reproductive Science and Psychiatry
Daniel Kasprzyk, Ph.D.
Vice President and Director
Center for Excellence in Survey Research
Harvey J. Makadon, M.D.
Clinical Professor of Medicine
Director of Professional Education and Training
The Fenway Institute
Department of Psychology
Department of Psychology
Family Acceptance Project
Marian Wright Edelman Institute
Mark A. Schuster, M.D., Ph.D., MPP
William Berenberg Professor of Pediatrics
Division of General Pediatrics
Children’s Hospital Boston
Professor of Economics
Ruth E. Zambrana, Ph.D.
Professor of Women’s Studies, and
Consortium on Race, Gender, and Ethnicity
Monica N. Feit