APA Statement to the Institute of Medicine
Testimony of Clinton W. Anderson, Ph.D. On behalf of the American Psychological Association to the Committee on Lesbian, Gay, Bisexual and Transgender (LGBT) Health Issues and Research Gaps and Opportunities (IOM-BSP-09-10) Institute of Medicine, Washington, DC, February 1, 2010
Good afternoon. My name is Clinton Anderson and I represent the American Psychological Association, where I serve both as the Director of the Office on Lesbian, Gay, Bisexual, and Transgender (LGBT) Concerns and as Associate Executive Director of the Public Interest Directorate. The American Psychological Association (APA) is the largest scientific and professional organization representing psychology in the United States and is the world's largest association of psychologists. Our membership includes more than 145,000 scientists, educators, clinicians, consultants, and students. APA greatly appreciates the opportunity to provide input to this important Institute of Medicine Committee. We also thank the leadership of the National Institutes of Health for initiating and funding the study and the staff of the IOM for organizing and supporting the Committee's work.
For over 35 years, APA has been at the forefront of efforts to advance research, services, and policy in support of the equality, health, and well-being of LGBT people. We firmly believe that rigorous scientific research is a necessary foundation for understanding and improving the lives of LGBT individuals.
APA has a longstanding history of close communications and cooperation with the National Institutes of Health concerning research with LGBT populations. In fact, our association was a committed and early supporter of the vigorous HIV prevention research portfolio that NIH has advanced. In addition, APA strongly encouraged NIH to support research on anti-gay violence and victimization and on lesbian and gay adolescent suicidality. Furthermore, we have strongly encouraged the inclusion of sexual orientation questions in major NIH-funded studies such as the National Longitudinal Study of Adolescent Health and the Women's Health Initiative and of gender identity and sexual orientation questions in the National Children's Study.
Of particular significance, in 1999 APA was a cosponsor of a conference on behavioral and mental health research with LGBT populations that was organized by several NIH components. This conference led to the release in 2001 of a significant NIH program announcement, which solicited grant applications and led to the funding of a number of important research projects and fellowships. I will comment further on the program announcement later in my statement.
My remarks today incorporate ideas that have been contributed by a wide range of APA members, committees, and staff, as well as observations from other scientists and past and current NIH officials. I will first briefly discuss the critical need for health research with LGBT populations, then address NIH's recent history in supporting such research, and close my comments with some recommendations for how NIH can more effectively support this research area.
In short, our message is that although NIH is to be highly commended for supporting important research on LGBT health during the past decade, NIH's support for such research has been incomplete, fragmented, and insufficiently integrated into the NIH organizational structure. Our recommendations are aimed at addressing these concerns.
To begin, there is ample evidence that gender identity and sexual orientation have pervasive and complex influences on behavior and development for the whole population, while having an especially powerful influence on LGBT people. We need more research on the nature and development of gender identity and sexual orientation; about their interactions with other biological, psychological, social, and cultural factors; and, especially, their interactions with crucial factors associated with health disparities, such as race/ethnicity, gender, and socioeconomic status. We need scientifically valid characterizations of LGBT people's families, households, and social networks; of their development and aging; of how they navigate the legal and social constraints that still restrict their behavior; of their economic resources, including access to health care; and of their health-related behaviors such as alcohol and tobacco use, diet, and exercise. Development of methodologies and analytical techniques for obtaining and understanding data from smaller and less accessible populations is also needed.
Although the majority of LGBT people are as healthy, physically and mentally, as their non-LGBT counterparts, research has strongly suggested higher prevalence rates for a number of health problems, including mood and anxiety disorders, various forms of substance abuse, and HIV/AIDS. Some data have also suggested higher rates of suicidality, eating disorders, certain forms of cancer, obesity, and cardiovascular disease. Some of these problems are or may be concentrated in particular subgroups of the LGBT population.
We lack sufficient understanding of the magnitude and distribution of these health problems and of their underlying mechanisms. Clearly, the experiences of stigma and discrimination that virtually all LGBT people face have a great impact on the increased risks. However, we do not fully understand the pathways that lead from those experiences to specific disorders, nor do we adequately understand the factors that help protect the majority of LGBT people from these problems. Such knowledge is required for the design of effective preventive and treatment interventions at the individual and community levels.
The NIH took a major step in 2001 when it issued the program announcement I referred to earlier in my remarks. While individual components of NIH had previously supported research on LGBT health, this announcement, titled "Behavioral, Social, Mental Health, and Substance Abuse Research With Diverse Populations" (PA-01-096), immediately succeeded in stimulating new grant applications in a variety of LGBT health research areas, and a number of these applications were funded. Although the announcement only referred to R01 grants, it also stimulated research, fellowship, and career development applications that used other mechanisms as well. In addition, we have been informed that this NIH announcement sent the important and needed message to researchers, students, and academic administrators around the nation that LGBT research was a legitimate area of science for which federal support was available.
There were also some limitations to the announcement. Please note that the title used a euphemism, "diverse populations," rather than using the terms lesbian, gay, bisexual, or transgender. The implication of the euphemism was not lost on the research community. In addition, only three funding components of the NIH were listed as sponsors: the National Institute of Mental Health, the National Institute on Drug Abuse, and the National Institute of Child Health & Human Development. Other NIH institutes that fund work in the general areas described in the announcement chose not to be sponsors, including notably the National Institute of Alcohol Abuse & Alcoholism and the National Institute on Aging.
The announcement also did not include other important areas of health research, such as cancer and cardiovascular disease, which are the domains of other institutes. Those institutes have in fact funded some research on LGBT populations, but based on a search of the NIH Guide, it appears they have done little to explicitly encourage such research.
Subsequently, in 2003, media reports appeared indicating that some members of the administration and of Congress were seeking in various ways to stop or constrain research related to sexuality. In addition, some members of Congress sought to defund a number of active NIH grants. While these efforts were not successful—due in large part to the strong defense of the research by then NIH Director Elias Zerhouni--they did have a very negative effect. For instance, we were informed that the number of applications for LGBT research declined markedly. Scientists have told us that they assumed NIH would not fund research on LGBT topics anymore or that they did not want to risk having their work debated on the floor of Congress.
After a hiatus, the program announcement was reissued as "Health Research with Diverse Populations" (PA-06-218, PA-07-049). Fortunately, NIAAA signed on as a sponsor. Regrettably, NIMH withdrew its sponsorship in November 2009. It is our understanding that the number of applications responding to the announcement has remained low in recent years. The current version of the announcement expires in September 2010, and we have not been informed whether there are plans for it to be reissued.
Therefore, NIH has made significant progress in supporting research on LGBT health, but much more needs to be done. We believe that there are great opportunities to accomplish what is urgently needed. We respectfully request that the Committee consider the following recommendations that we believe would enable NIH to maximize the value and impact of its support for LGBT health research:
NIH should develop a long-term, comprehensive, interdisciplinary portfolio of LGBT health research that spans all relevant NIH institutes and centers. This research would include basic, prevention, translational, clinical, services, and dissemination research. Funding would include not only research grants, but also training and career development grants. Targeted funding announcements for LGBT research would be issued, and LGBT research would be included in broader announcements as well. NIH intramural programs should also be encouraged to support LGBT research.
NIH should include questions on gender identity and sexual orientation in large population-based health studies, such as the National Children's Study.
NIH should take steps to communicate unambiguously to the research community and the public that LGBT health is an important and respectable area of scientific research and that NIH encourages and will defend rigorous, peer-reviewed, ethical research on LGBT health. Such communications would use clear, direct language, including such terms as "lesbian," "gay," "bisexual," and "transgender" or the increasingly standard abbreviation, "LGBT," in titles, announcements, and abstracts.
All NIH institutes should include consideration of LGBT health disparities within their health disparities plans. LGBT health disparities could then be consistently included in NIH's policies, activities, and reports related to health disparities research.
Organizational responsibility to support and manage LGBT research should be explicit within the NIH Director's Office and within the individual institutes. This could be accomplished through the following: establishment of offices for LGBT health research; inclusion of LGBT health within the missions of existing offices for special populations; and establishment of standing funding programs and branches that include LGBT research as a major focus. Program officers with appropriate scientific background should be recruited to staff these entities.
In closing, I, on behalf of APA, would like to once again express our appreciation to the Committee for the opportunity to offer these recommendations. I will be pleased to answer any questions you may have. APA stands ready at any time to provide additional materials and information to the Committee as it pursues its important goals.