Sexual and gender diverse (SGD) populations are dynamic, rapidly growing, and continually evolving. In recent years, trends in data collection have shifted, creating new opportunities to study sexual orientation, gender identity, intersex status, and other relevant components of SGD identities, such as sexual attraction and sexual behavior. However, the existing data and the research methodologies behind current study measures are not sufficient to capture and convey the richness of SGD communities or to capture the varied effects that unique and intersecting identities have on health and well-being outcomes for SGD people.
As discussed in Chapter 4, existing sexual orientation and gender identity questions are presented inconsistently across data collection tools, often separated from other demographic measures, and frequently use binary assessments of gender, which do not effectively describe gender diversity. Furthermore, research efforts to date have focused on lesbian women and gay men; although there has been increased attention in recent years to bisexual and transgender people, intersex populations (also known as those with differences of sex development) have been almost wholly ignored. The committee emphasizes that there is an urgent need for robust scientific evidence that includes not just lesbian, gay, bisexual, and transgender people, but also intersex people, people with same-sex or same-gender attractions or behaviors, and people who identify as asexual, Two Spirit, queer, or other terms under the SGD umbrella.
In the wake of social change and ongoing legal developments regarding protections for SGD people in employment, health care, military service, family formation, and other key areas of life, it is increasingly important
to understand how the provision or the denial of access to opportunities and resources effects SGD people over the entire life course. There is also a critical need to collect and analyze data that seek to understand how experiences differ within SGD populations according to such factors as gender, race, and ethnicity. A varied, comprehensive, and inclusive research infrastructure for SGD populations is essential in understanding the unique and shared challenges these individuals and communities face and for guiding actions to improve their well-being across all domains of life, including social justice and legal equality, health and health care, employment, education, and housing.
The report of the Institute of Medicine (2011) on the LGBT population noted that LGBT populations are often considered a single monolithic group, which obscures important differences among individuals and communities. While the report did not include specific reference to people with intersex traits and other SGD groups, it noted that an essential step in understanding and addressing the needs of LGBT communities is collecting more and better demographic data about sexual orientation and gender identity. The 2011 report recommended that these data be collected in federally funded surveys administered by the U.S. Department of Health and Human Services and in other relevant population surveys, as well as in research studies funded by the National Institutes of Health and in electronic health records.
This current committee finds that collecting data on the identities and experiences of SGD people is an essential step toward understanding the ways in which outcomes for SGD groups differ from those of heterosexual and cisgender populations. Effectively addressing disparities related to sexual orientation, gender identity, and intersex status will require collaborative and coordinated efforts among federal, state, and private stakeholders. In addition, it will be important to involve SGD communities themselves, including SGD people of color, in all aspects of the research process. Meaningful community participation is a critical way that SGD population research can be accountable and accurately reflect the lives and experiences of the communities being studied.
In the past decade there has been significant progress in the development of metrics that measure sexual orientation and gender identity. Validated and standardized versions of questions about sexual orientation, sexual behavior, and sexual attraction are increasingly used in population surveys, but there is much room for improvement. For example, the Census Bureau’s American Community Survey and Current Population Survey allow identification of same-sex couples, which is a useful though imperfect proxy for sexual orientation, but the surveys do not ask about gender identity or intersex status. Several important surveys used in research on health, housing, wages, employment, and education outcomes do not include questions on sexual orientation, gender identity, or intersex status.
Other surveys measure gender identity using a single-item design (e.g., “are you male, female, or transgender?”), which has been shown to substantially undercount transgender and other gender diverse people in comparison with a two-step question that asks about both current gender identity and sex assigned at birth. Intersex status questions still need to be developed, field-tested, and validated for use in population surveys.
The health and well-being of SGD populations across the Unites States could be improved by the addition of sexual orientation, gender identity, and intersex status measures to publicly and privately sponsored data collection activities at national, state, county, municipal, school district, and tribal levels. Types of data collection activities in which these data could be collected include survey research; nonsurvey research, such as clinical trials and program evaluations; and administrative data systems, including intake forms and applications for federal and state programs. It is also essential to collect these data in electronic health records and other clinical records.
It is important to use a variety of methodological approaches when studying SGD populations, including but not limited to quasi-experimental designs, longitudinal cohort studies, and ethnographic and historical research. Study designs that allow for causal inference about associations between exposures, such as discrimination, and outcomes, such as depression, are also critical. Using context-rich research designs that respect and elevate the multifaceted identities and lived experiences of SGD people is another key component of understanding the needs of these communities. In all research activities, SGD communities should be treated as partners rather than solely as research subjects, and all data need to be collected and analyzed in ways that ensure respondent privacy and confidentiality and provide robust protections from discrimination.
The growing and dynamic nature of SGD populations challenges researchers and policy makers to collect more and better data and to consider the degree to which research reflects the most pressing needs of these populations and the multiple contemporary challenges they face. There are a number of data system reforms that could help advance knowledge related to how laws, political institutions, and public policies shape the well-being of SGD populations. A key need is developing systems and methods that identify geographic indicators for SGD respondents and remove barriers in access to, or use of, such indicators in datasets. Improving research infrastructure will facilitate the generation of high-quality scientific evidence that can inform evidence-based interventions in a variety of sectors to promote the well-being of SGD people; optimize the social, political, and economic determinants of their health; and promote their resilience and well-being.
The committee’s recommendations aim to identify opportunities to advance understanding of how individuals experience sexuality and gender
and how sexual orientation, gender identity, and intersex status affect SGD people over the life course. Our recommendations are in five categories: (1) population data; (2) measurement challenges related to understanding SGD populations; (3) critical data gaps; (4) improvement of the research community’s ability to use these data; and (5) the use of data for the development of high-quality, evidence-based interventions and programs. In each category, the committee makes efforts to identify the specific actors that are best positioned to respond to particular aspects of the research landscape. The committee has concluded that investing in research infrastructure and in a robust and comprehensive program of research in the ways described below will support the development of stronger, evidence-based policies and practices in the areas addressed in this report.
In order to make valid claims about the status of SGD populations in the United States, researchers, policy makers, and practitioners need accurate and representative population-level data that describe SGD populations in all their complexity. Researchers have worked for decades to develop sound approaches for the collection of data about sexual orientation and gender identity, but such data are not collected consistently or completely across surveys, and population-level data for certain groups (e.g., people with intersex traits) do not exist.
Addressing the challenges highlighted in this report will require collaboration by a coalition of actors. In addressing national population data needs, the committee considers the following stakeholders central to implementing these recommendations:
- entities throughout the federal statistical system, particularly the Census Bureau at the Department of Commerce; the Bureau of Labor Statistics at the Department of Labor; the National Center for Education Statistics at the Department of Education; the National Agricultural Statistics Service and the Economic Research Service at the Department of Agriculture; the National Center for Health Statistics at the Department of Health and Human Services; the Bureau of Justice Statistics at the Department of Justice; the National Center for Science and Engineering Statistics at the National Science Foundation; the Statistics of Income Division at the Internal Revenue Service; and the Office of Research, Evaluation, and Statistics at the Social Security Administration;
- other federal agencies and entities that collect demographic data on individuals and populations, including but not limited to the National Institutes of Health, the Centers for Disease Control and
- Prevention, and the Agency for Healthcare Research and Quality at the Department of Health and Human Services and the Departments of Defense, Homeland Security, Housing and Urban Development, State, and Veterans Affairs;
- state, local, and tribal statistical agencies, offices, and other entities (e.g., state health departments, school districts); and
- surveys and research conducted or sponsored by universities and private foundations, such as NORC at the University of Chicago, the Gallup Daily Tracking Survey, and the Understanding America Study at the University of Southern California.
At the national level, a federal interagency working group at the U.S. Office of Management and Budget (OMB) has played a key role in assessing the status of data collection on sexual orientation and gender identity across the federal statistical agencies. OMB has the ability to create standards for demographic data collection that must be used by all entities within the federal statistical system. The absence of that authoritative federal role has had consequences for both the availability and accuracy of LGBTQI+ population-level data in the United States.
As part of implementing Recommendation 1, OMB should reconvene the Federal Interagency Working Group on Improving Measurement of Sexual Orientation and Gender Identity in Federal Surveys and charge it with developing government-wide standards for the collection of data on sexual orientation, gender identity, and intersex status. An OMB standard for collecting these data would give the federal agencies necessary guidance while also allowing certain modifications to ensure these data are being collected in an accurate and appropriate manner for different populations and types of data collection activities. These data can be used to identify disparities and evaluate efforts to address them by tracking population-level trends in such areas as employment, educational attainment, health status, and access to care. They can also be used to measure, track, and improve person-level outcomes and to ensure compliance with relevant civil rights and other nondiscrimination laws.
The establishment of measurement standards for sexual orientation, gender identity, and intersex status could bolster high-priority data col-
lection activities in federal, state, local, and tribal health agencies, and nongovernmental health entities, including but not limited to hospitals, health plan providers, and physician practices. It could also prompt the Census Bureau and the Bureau of Labor Statistics to expand important data collection activities to include measures that capture a fuller range of sexual and gender diversity in the population, starting with adding established measures of sexual orientation and gender identity to surveys, especially including the American Community Survey, the Current Population Survey, and the American Time Use Survey. Finally, measurement standards would aid federal statistical agencies in providing support to state and local entities in the collection of population data specific to their local contexts. For example, the National Center for Education Statistics could assist education researchers in collecting data that capture sexual orientation, gender identity, and intersex status in studies of students and school personnel.
There are considerable challenges in the collection of data that capture diverse, complex characteristics of SGD populations. Because of the complicated ways that race, class, sex, gender identity, sexual orientation, and other factors interact in people’s experiences, current measures do not always sufficiently reflect the lived experiences of these populations. Research stakeholders have a role to play in helping to address methodological challenges associated with collecting accurate and complete data about SGD communities.
OMB’s role as a coordinating body would have particular value for this effort by working with the federal statistical agencies to standardize measures for gender identity and sexual orientation identity, behavior, and attraction, as well as to develop and validate measures relevant to people with intersex traits. OMB could support the consistent use of reliable, validated assessment tools with large representative samples of SGD populations, as well as with other important research. The routine inclu-
sion of sexual orientation, gender identity, and intersex status questions on federally supported surveys and in other research could also advance the generation and use of measures that help researchers understand how such factors as stigma and disclosure affect the health and well-being of SGD populations across the life course.
As an example of what this kind of investment might look like in one policy sphere, the National Center for Education Statistics and other federal and state agencies would be able to assess their funded surveys and data collection instruments for inclusion of measures that permit analysis of the experiences of SGD students and education personnel in educational settings. Measures that evaluate the implementation of policies and practices known to be associated with positive educational environments for SGD students and staff could also be included in this work. By funding research on priority areas of need based on these assessments, federal agencies would be better able to implement policies that have the potential to improve education environments for SGD students.
Not all topics can be explored efficiently or effectively through the use of data drawn from representative samples of a population; when focusing on underrepresented groups, it is sometimes necessary to use different methods that capture adequate samples of the population in question for effective study. In addition to data from representative samples, the committee identified additional needs for data in a variety of topical areas; some gaps could be addressed through observational studies of specific populations, while others might require experimental studies that randomly assign participants to different treatment groups, qualitative explorations of specific topics, or other methods. Data needs of this kind are particularly important for the study of small groups, such as transgender women of color, Native American Two Spirit people, and people with intersex traits. For decades, SGD organizations have published written works that highlight social and cultural advancements within their communities. These works and other ethnographies have shaped contemporary studies and social movements and could also be used to inform the creation of community-based and culturally sensitive qualitative data collection methods.
Once comprehensive, accurate data are collected, it is critical that researchers have the ability to access these data to address emerging research questions. Currently, many sources of available data across populations and levels of government are not linked. This lack significantly impairs the ability of the researchers to develop scientific evidence to help address critical policy, social, and economic concerns relevant to SGD populations. By improving researchers’ ability to access, link, and use existing data, stakeholders could substantially advance the relevance and impact of research.
The goal of this recommendation is to allow data that have been housed in only one or a few agencies or industries to be linked in ways that provide the research community a more complete picture of the prevalence, distribution, and lived experiences of SGD populations. The results of the recommended convenings could include the following:
- developing systems and methods that permit the linkage of datasets—such as matching individual Social Security records that capture name and gender marker changes with administrative records of earnings and occupational attainment—to advance understanding of determinants of SGD well-being;
- developing systems and methods that identify geographic indicators for SGD respondents (e.g., state or city of residence) and remove barriers in appropriate access to, and use of, such indicators in datasets; and
- prioritizing individuals’ privacy and confidentiality by establishing guidelines for working with and sharing potentially identifiable personal data among researchers and practitioners who are bound by professional and legal obligations to maintain data confidentiality and security.
The charge for this report was to review available data and assess future data needs for SGD populations, but the committee is cognizant that work does not stop once data are collected or even when they are analyzed. Although the urgent task for the research community at large is to develop metrics that will lead to enhanced understanding of SGD populations, the ultimate goal of collecting more accurate and relevant data should be to enhance understanding of the mediating factors that can highlight the positive differences and close the disparities that exist between SGD and heterosexual or cisgender populations. Comprehensive and accurate population-level data can play a critical role in the development, implementation, and evaluation of programs, services, and interventions that support the health and well-being of SGD populations. The data deficits described throughout this report have contributed to a relative dearth of programming to address the specific needs of these populations, as well as an absence of evidence-based processes to evaluate programs.
As discussed in Chapter 7, an increase in the prevalence and visibility of SGD populations in recent years prompted community-based health organizations to respond by offering increased support for SGD patients. Reactions such as those to notable shifts in SGD populations could be supported through the timely collection of relevant empirical SGD population data. Placing scientific evidence at the forefront of program planning will allow researchers, policy makers, and public and private stakeholders to develop services and interventions that can benefit SGD communities.
The recommended activities could include, but are not limited to, the following:
- evaluations of social service programs in federal agencies—such as the Department of Health and Human Services, Department of Housing and Urban Development, Department of Education, and Department of Labor—to ensure the absence of bias and other barriers in service acquisition and delivery processes for members of SGD populations;
- evaluations of public and private social service agencies and programs—such as those for food and housing assistance, runaway and homeless youth, family and youth services, and workforce development—to increase inclusivity and reduce disparities for SGD people;
- increased evidence-based support for existing SGD community-based organizations and health centers, including federally qualified community health centers;
- development of programs, policies, and practices relevant to systems in which SGD populations are involved—such as family courts, criminal justice, immigration, and child welfare—that enhance cultural competency and reduce disparities in treatment of SGD populations;
- development of programs, policies, and practices that reduce stigma and discrimination against members of SGD populations in all the domains discussed in this report; and
- implementation of policies, programs, and practices known to be associated with positive environments for SGD populations, including educational, workplace, health care settings, and places of public accommodation.
The increase in prevalence and visibility of SGD populations illuminates the need for greater understanding of the ways in which current laws, systems, and programs affect their well-being. Individuals who identify as lesbian, gay, bisexual, asexual, transgender, non-binary, queer, or intersex and those who express same-sex or same-gender attractions or behaviors will have experiences across their life course that differ from those of cisgender and heterosexual individuals. Characteristics such as age, race and ethnicity, and geographic location intersect to play a distinct role in the challenges and opportunities SGD people face. This report underscores the need for researchers to seek to understand disparities and advance equity both within and across SGD population groups.
Institute of Medicine. (2011). The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13128.