At a time when lesbian, gay, bisexual, and transgender (LGBT) individuals are an increasingly open, acknowledged, and visible part of society, clinicians and researchers are faced with incomplete information about the health status of this community. Although a modest body of knowledge on LGBT health has been developed over the last two decades, much remains to be explored. What is currently known about LGBT health? Where do gaps in the research in this area exist? What are the priorities for a research agenda to address these gaps? This report aims to answer these questions.
THE LGBT COMMUNITY
The phrase “lesbian, gay, bisexual, and transgender community” (or “LGBT community”) refers to a broad coalition of groups that are diverse with respect to gender, sexual orientation, race/ethnicity, and socioeconomic status. Thus while this report focuses on the community that is encapsulated by the acronym LGBT, the committee wishes to highlight the importance of recognizing that the various populations represented by “L,” “G,” “B,” and “T” are distinct groups, each with its own special health-related concerns and needs. The committee believes it is essential to emphasize these differences at the outset of this report because in some contemporary scientific discourse, and in the popular media, these groups are routinely treated as a single population under umbrella terms such as LGBT. At the same time, as discussed further below, these groups have many experiences in common, key among them being the experience of stigmatization. (Differences
within each of these groups related to, for example, race, ethnicity, socioeconomic status, geographic location, and age also are addressed later in the chapter.)
Lesbians, gay men, and bisexual men and women are defined according to their sexual orientation, which, as discussed in Chapter 2, is typically conceptualized in terms of sexual attraction, behavior, identity, or some combination of these dimensions. They share the fact that their sexual orientation is not exclusively heterosexual. Yet this grouping of “nonheterosexuals” includes men and women; homosexual and bisexual individuals; people who label themselves as gay, lesbian, or bisexual, among other terms; and people who do not adopt such labels but nevertheless experience same-sex attraction or engage in same-sex sexual behavior. As explained throughout the report, these differences have important health implications for each group.
In contrast to lesbians, gay men, and bisexual men and women, trans-gender people are defined according to their gender identity and presentation. This group encompasses individuals whose gender identity differs from the sex originally assigned to them at birth or whose gender expression varies significantly from what is traditionally associated with or typical for that sex (i.e., people identified as male at birth who subsequently identify as female, and people identified as female at birth who later identify as male), as well as other individuals who vary from or reject traditional cultural conceptualizations of gender in terms of the male–female dichotomy. The transgender population is diverse in gender identity, expression, and sexual orientation. Some transgender individuals have undergone medical interventions to alter their sexual anatomy and physiology, others wish to have such procedures in the future, and still others do not. Transgender people can be heterosexual, homosexual, or bisexual in their sexual orientation. Some lesbians, gay men, and bisexuals are transgender; most are not. Male-to-female transgender people are known as MtF, transgender females, or transwomen, while female-to-male transgender people are known as FtM, transgender males, or transmen. Some transgender people do not fit into either of these binary categories. As one might expect, there are health differences between transgender and nontransgender people, as well as between transgender females and transgender males.
Whereas “LGBT” is appropriate and useful for describing the combined populations of lesbian, gay, bisexual, and transgender people, it also can obscure the many differences that distinguish these sexual- and gender-minority groups. Combining lesbians and gay men under a single rubric, for example, obscures gender differences in the experiences of homosexual people. Likewise, collapsing together the experiences of bisexual women and men tends to obscure gender differences. Further, to the extent that lesbian, gay, and bisexual are understood as identity labels,
“LGB” leaves out people whose experience includes same-sex attractions or behaviors but who do not adopt a nonheterosexual identity. And the transgender population, which itself encompasses multiple groups, has needs and concerns that are distinct from those of lesbians, bisexual women and men, and gay men.
As noted above, despite these many differences among the populations that make up the LGBT community, there are important commonalities as well. The remainder of this section first describes these commonalities and then some key differences within these populations.
Commonalities Among LGBT Populations
What do lesbians, gay men, bisexual women and men, and transgender people have in common that makes them, as a combined population, an appropriate focus for this report? In the committee’s view, the main commonality across these diverse groups is their members’ historically marginalized social status relative to society’s cultural norm of the exclusively heterosexual individual who conforms to traditional gender roles and expectations. Put another way, these groups share the common status of “other” because of their members’ departures from heterosexuality and gender norms. Their “otherness” is the basis for stigma and its attendant prejudice, discrimination, and violence, which underlie society’s general lack of attention to their health needs and many of the health disparities discussed in this report. For some, this “otherness” may be complicated by additional dimensions of inequality such as race, ethnicity, and socioeconomic status, resulting in stigma at multiple levels.
To better understand how sexuality- and gender-linked stigma are related to health, imagine a world in which gender nonconformity, same-sex attraction, and same-sex sexual behavior are universally understood and accepted as part of the normal spectrum of the human condition. In this world, membership in any of the groups encompassed by LGBT would carry no social stigma, engender no disgrace or personal shame, and result in no discrimination. In this world, a host of issues would threaten the health of LGBT individuals: major chronic diseases such as cancer and heart disease; communicable diseases; mental disorders; environmental hazards; the threat of violence and terrorism; and the many other factors that jeopardize human “physical, mental and social well-being.”1 By and large,
however, these issues would be the same as those confronting the rest of humanity. Only a few factors would stand out for LGBT individuals specifically. There would be little reason for the Institute of Medicine (IOM) to issue a report on LGBT health issues.
We do not live in the idealized world described in this thought experiment, however. Historically, lesbians, gay men, bisexual individuals, and transgender people have not been understood and accepted as part of the normal spectrum of the human condition. Instead, they have been stereotyped as deviants. Although LGBT people share with the rest of society the full range of health risks, they also face a profound and poorly understood set of additional health risks due largely to social stigma.
While the experience of stigma can differ across sexual and gender minorities, stigmatization touches the lives of all these groups in important ways and thereby affects their health. In contrast to members of many other marginalized groups, LGBT individuals frequently are invisible to health care researchers and providers. As explained in later chapters, this invisibility often exacerbates the deleterious effects of stigma. Overcoming this invisibility in health care services and research settings is a critical goal if we hope to eliminate the health disparities discussed throughout this report.
It is important to note that, despite the common experience of stigma among members of sexual- and gender-minority groups, LGBT people have not been passive victims of discrimination and prejudice. The achievements of LGBT people over the past few decades in building a community infrastructure that addresses their health needs, as well as obtaining acknowledgment of their health concerns from scientific bodies and government entities, attest to their commitment to resisting stigma and working actively for equal treatment in all aspects of their lives, including having access to appropriate health care services and reducing health care disparities. Indeed, some of the research cited in this report demonstrates the impressive psychological resiliency displayed by members of these populations, often in the face of considerable stress.
As detailed throughout this report, the stigma directed at sexual and gender minorities in the contemporary United States creates a variety of challenges for researchers and health care providers. Fearing discrimination and prejudice, for example, many lesbian, gay, bisexual, and transgender people refrain from disclosing their sexual orientation or gender identity to researchers and health care providers. Regardless of their own sexual orientation or gender identity, moreover, researchers risk being marginalized or discredited simply because they have chosen to study LGBT issues (Kempner, 2008), and providers seldom receive training in specific issues related to the care of LGBT patients. In addition, research on LGBT health involves some specific methodological challenges, which are discussed in Chapter 3.
Differences Within LGBT Populations
Not only are lesbians, gay men, bisexual women and men, and transgender people distinct populations, but each of these groups is itself a diverse population whose members vary widely in age, race and ethnicity, geographic location, social background, religiosity, and other demographic characteristics. Since many of these variables are centrally related to health status, health concerns, and access to care, this report explicitly considers a few key subgroupings of the LGBT population in each chapter:
Age cohort—One’s age influences one’s experiences and needs. Bisexual adolescents who are wrestling with coming out in a nonsupportive environment have different health needs than gay adult men who lack access to health insurance or older lesbians who are unable to find appropriate grief counseling services. In addition, development does not follow the same course for people of all ages. An older adult who comes out as gay in his 50s may not experience the developmental process in the same fashion as a self-identified “queer” youth who comes out during her teenage years. Similarly, as discussed further below, experiences across the life course differ according to the time period in which individuals are born. For example, an adolescent coming out in 2010 would do so in a different environment than an adolescent coming out in the 1960s. Moreover, some people experience changes in their sexual attractions and relationships over the course of their life. Some transgender people, for example, are visibly gender role nonconforming in childhood and come out at an early age, whereas others are able to conform and may not come out until much later in life.
Race and ethnicity—Concepts of community, traditional roles, religiosity, and cultural influences associated with race and ethnicity shape an LGBT individual’s experiences. The racial and ethnic communities to which one belongs affect self-identification, the process of coming out, available support, the extent to which one identifies with the LGBT community, affirmation of gender-variant expression, and other factors that ultimately influence health outcomes. Members of racial and ethnic minority groups may have profoundly different experiences than non-Hispanic white LGBT individuals.
Educational level and socioeconomic status—An LGBT individual’s experience in society varies depending on his or her educational level and socioeconomic status. As higher educational levels tend to be associated with higher income levels, members of the community who are more educated may live in better neighborhoods with
better access to health care and the ability to lead healthier lives because of safe walking spaces and grocery stores that stock fresh fruits and vegetables (although, as discussed in later chapters, evidence indicates that some LGBT people face economic discrimination regardless of their educational level). On the other hand, members of the LGBT community who do not finish school or who live in poorer neighborhoods may experience more barriers in access to care and more negative health outcomes.
Geographic location—Geographic location has significant effects on mental and physical health outcomes for LGBT individuals. Those in rural areas or areas with fewer LGBT people may feel less comfortable coming out, have less support from families and friends, and lack access to an LGBT community. LGBT individuals in rural areas may have less access to providers who are comfortable with or knowledgeable about the treatment of LGBT patients. In contrast, LGBT people living in areas with larger LGBT populations may find more support services and have more access to health care providers who are experienced in treating LGBT individuals.
Although these areas represent critical dimensions of the experiences of LGBT individuals, the relationships of these variables to health care disparities and health status have not been extensively studied.
STATEMENT OF TASK AND STUDY SCOPE
In the context of the issues outlined above, the IOM was asked by the National Institutes of Health (NIH) to convene a Committee on Lesbian, Gay, Bisexual, and Transgender Health Issues and Research Gaps and Opportunities. The 17-member committee included experts from the fields of mental health, biostatistics, clinical medicine, adolescent health and development, aging, parenting, behavioral sciences, HIV research, demography, racial and ethnic disparities, and health services research. The committee’s statement of task is shown in Box 1-1. The study was supported entirely by NIH.
Although intersexuality constitutes an additional type of “otherness” that is stigmatized and overlaps in some respects with LGBT identities and health issues, the committee decided it would not be appropriate to include intersexuality in the study scope. The majority of individuals affected by disorders of sex development do not face challenges related to sexual orientation and gender identity, although homosexuality, gender role nonconformity, and gender dysphoria (defined as discomfort with the gender assigned to one at birth [see Chapter 2]) are somewhat more prevalent among this population compared with the general population (Cohen-Kettenis and
Statement of Task
An IOM committee will conduct a review and prepare a report assessing the state of the science on the health status of lesbian, gay, bisexual, and transgender (LGBT) populations; identify research gaps and opportunities related to LGBT health; and outline a research agenda that will assist NIH in enhancing its research efforts in this area. Additionally, the committee will consider research training needs to foster the advancement of knowledge about LGBT health and identify impediments that hinder such advancement.
Areas of interest to the committee might include but are not limited to
Pfafflin, 2003). The committee acknowledges that while very little research exists on the subject of intersexuality, it is a separate research topic encompassing critical issues, most of which are not related to LGBT issues, and hence is beyond the scope of this report.
In a similar vein, the committee decided not to address research and theory on the origins of sexual orientation. The committee’s task was to review the state of science on the health status of LGBT populations, to identify gaps in knowledge, and to outline a research agenda in the area of LGBT health. The committee recognized that a thorough review of research and theory relevant to the factors that shape sexual orientation (including sexual orientation identity, sexual behavior, and sexual desire or attraction) would be a substantial task, one that would be largely distinct from the committee’s main focus on LGBT health, and therefore beyond the scope of the committee’s charge.
This study was informed by four public meetings that included 35 presentations (see Appendix A). Three of these meetings were held in Washington, DC, while the fourth took place in San Francisco. In addition, the committee conducted an extensive review of the literature using Medline, PsycInfo, and the Social Science Citation Index (see Appendix B for a list of search terms), as well as other resources. The committee’s approach to the literature is described below, followed by a discussion of the various frameworks applied in this study. A brief note on the terminology used in this report is presented in Box 1-2.
Approach to the Literature
While acknowledging that peer-reviewed journals are the gold standard for the reporting of research results and making every effort to consult works published in major research journals, the committee chose to include in this study what it judged to be the best empirical literature available: journal articles, book chapters, empirical reports, and other data sources that had been critically reviewed by the committee members. Recognizing that academic journals differ in their publication criteria and the rigor of their peer-review process, the committee gave the greatest weight to papers published in the most authoritative journals. Given that chapters, academic books, and technical reports typically are not subjected to the same peer-review standards as journal articles, the committee gave the greatest credence to such sources that reported research employing rigorous methods, were authored by well-established researchers, and were generally consistent with scholarly consensus on the current state of knowledge.
With respect to articles describing current health issues in the LGBT community, the committee attempted to limit its review to these articles published since 1999. In the area of transgender populations, however, much of the most current research was conducted prior to 1999 and is
A Note on Terminology
As discussed, the committee adopted the commonly used shorthand LGBT to stand for lesbian, gay, bisexual, and transgender. In cases in which the literature refers only to lesbian, gay, and bisexual populations, the term LGB appears in the report without the T. Appendix C provides a glossary to assist the reader with any unfamiliar terminology.
cited throughout the report. Likewise, in the case of history and theory, the committee reviewed and cites older literature.
When evaluating quantitative and qualitative research, the committee considered factors affecting the generalizability of studies, including sample size, sample source, sample composition, recruitment methods, and response rate. The committee also considered the study design, saturation (the point at which new information ceases to emerge), and other relevant factors. In some cases, the committee decided that a study with sample limitations was important; in such cases, these limitations and limits on the extent to which the findings can be generalized are explicitly acknowledged. The inclusion of case studies was kept to a minimum given their limited generalizability.
Research on U.S. samples was given priority. In cases in which no U.S.-based data were available or the committee determined that it was important to include research on non-U.S. samples, however, this research is cited. This was frequently the case for research involving transgender people. Only English-language articles were considered.
The committee considered papers whose authors employed statistical methods for analyzing data, as well as qualitative research that did not include statistical analysis. For papers that included statistical analysis, the committee evaluated whether the analysis was appropriate and conducted properly. For papers reporting qualitative research, the committee evaluated whether the data were appropriately analyzed and interpreted. The committee does not present magnitudes of differences, which should be determined by consulting individual studies.
In some cases, the committee used secondary sources such as reports. However, it always referred back to the original citations to evaluate the evidence.
In understanding the health of LGBT populations, multiple frameworks can be used to examine how multiple identities and structural arrangements intersect to influence health care access, health status, and health outcomes. This section provides an overview of each of the conceptual frameworks used for this study.
First, recognizing that there are a number of ways to present the information contained in this report, the committee found it helpful to apply a life-course perspective. A life-course perspective provides a useful framework for the above-noted varying health needs and experiences of an LGBT individual over the course of his or her life. Central to a life-course framework (Cohler and Hammack, 2007; Elder, 1998) is the notion that the experiences of individuals at every stage of their life inform subsequent
experiences, as individuals are constantly revisiting issues encountered at earlier points in the life course. This interrelationship among experiences starts before birth and in fact, before conception. A life-course framework has four key dimensions:
Linked lives—Lives are interdependent; social ties, including immediate family and other relationships, influence individuals’ perspective on life.
Life events as part of an overall trajectory—Significant experiences have a differential impact at various stages of the life course.
Personal decisions—Individuals make choices influenced by the social contexts in which they live (e.g., family, peers, neighborhood, work setting).
Historical context—A historical perspective provides a context for understanding the forces and factors that have shaped an individual’s experiences; those born within the same historical period may experience events differently from those born earlier or later.
From the perspective of LGBT populations, these four dimensions have particular salience because together they provide a framework for considering a range of issues that shape these individuals’ experiences and their health disparities. The committee relied on this framework and on recognized differences in age cohorts, such as those discussed earlier, in presenting information about the health status of LGBT populations.
Along with a life-course framework, the committee drew on the minority stress model (Brooks, 1981; Meyer, 1995, 2003a). While this model was originally developed by Brooks (1981) for lesbians, Meyer (1995) expanded it to include gay men and subsequently applied it to lesbians, gay men, and bisexuals (Meyer, 2003b). This model originates in the premise that sexual minorities, like other minority groups, experience chronic stress arising from their stigmatization. Within the context of an individual’s environmental circumstances, Meyer conceptualizes distal and proximal stress processes. A distal process is an objective stressor that does not depend on an individual’s perspective. In this model, actual experiences of discrimination and violence (also referred to as enacted stigma) are distal stress processes. Proximal, or subjective, stress processes depend on an individual’s perception. They include internalized homophobia (a term referring to an individual’s self-directed stigma, reflecting the adoption of society’s negative attitudes about homosexuality and the application of them to oneself), perceived stigma (which relates to the expectation that one will be rejected and discriminated against and leads to a state of continuous vigilance that can require considerable energy to maintain; it is also referred to as felt stigma), and concealment of one’s sexual orientation or transgender identity. Re-
lated to this taxonomy is the categorization of minority stress processes as both external (enacted stigma) and internal (felt stigma, self-stigma) (Herek, 2009; Scambler and Hopkins, 1986).
There is also supporting evidence for the validity of this model for transgender individuals. Some qualitative studies strongly suggest that stigma can negatively affect the mental health of transgender people (Bockting et al., 1998; Nemoto et al., 2003, 2006).
The minority stress model attributes the higher prevalence of anxiety, depression, and substance use found among LGB as compared with heterosexual populations to the additive stress resulting from nonconformity with prevailing sexual orientation and gender norms. The committee’s use of this framework is reflected in the discussion of stigma as a common experience for LGBT populations and, in the context of this study, one that affects health.
In addition to the minority stress model, the committee believed it was important to consider the multiple social identities of LGBT individuals, including their identities as members of various racial/ethnic groups, and the intersections of these identities with dimensions of inequality such as poverty. An intersectional perspective is useful because it acknowledges simultaneous dimensions of inequality and focuses on understanding how they are interrelated and how they shape and influence one another. This framework also challenges one to look at the points of cohesion and fracture within racial/ethnic sexual- and gender-minority groups, as well as those between these groups and the dominant group culture (Brooks et al., 2009; Gamson and Moon, 2004).
Intersectionality encompasses a set of foundational claims and organizing principles for understanding social inequality and its relationship to individuals’ marginalized status based on such dimensions as race, ethnicity, and social class (Dill and Zambrana, 2009; Weber, 2010). These include the following:
Race is a social construct. The lived experiences of racial/ethnic groups can be understood only in the context of institutionalized patterns of unequal control over the distribution of a society’s valued goods and resources.
Understanding the racial and ethnic experiences of sexual- and gender-minority individuals requires taking into account the full range of historical and social experiences both within and between sexual- and gender-minority groups with respect to class, gender, race, ethnicity, and geographical location.
The economic and social positioning of groups within society is associated with institutional practices and policies that contribute to unequal treatment.
The importance of representation—the ways social groups and individuals are viewed and depicted in the society at large and the expectations associated with these depictions—must be acknowledged. These representations are integrally linked to social, structural, political, historical, and geographic factors.
Intersectional approaches are based on the premise that individual and group identities are complex—influenced and shaped not just by race, class, ethnicity, sexuality/sexual orientation, gender, physical disabilities, and national origin but also by the confluence of all of those characteristics. Nevertheless, in a hierarchically organized society, some statuses become more important than others at any given historical moment and in specific geographic locations. Race, ethnicity, class, and community context matter; they are all powerful determinants of access to social capital—the resources that improve educational, economic, and social position in society. Thus, this framework reflects the committee’s belief that the health status of LGBT individuals cannot be examined in terms of a one-dimensional sexual- or gender-minority category, but must be seen as shaped by their multiple identities and the simultaneous intersection of many characteristics.
Finally, the social ecology model (McLeroy et al., 1988) draws on earlier work by Bronfenbrenner (1979), which recognizes that influences on individuals can be much broader than the immediate environment. This viewpoint is reflected in Healthy People 2020. In developing objectives to improve the health of all Americans, including LGBT individuals, Healthy People 2020 used an ecological approach that focused on both individual-and population-level determinants of health (HHS, 2000, 2011). With respect to LGBT health in particular, the social ecology model is helpful in conceptualizing that behavior both affects the social environment and, in turn, is affected by it. A social ecological model has multiple levels, each of which influences the individual; beyond the individual, these may include families, relationships, community, and society. It is worth noting that for LGBT people, stigma can and does take place at all of these levels. The committee found this framework useful in thinking about the effects of environment on an individual’s health, as well as ways in which to structure health interventions.
Each of the above four frameworks provides conceptual tools that can help increase our understanding of health status, health needs, and health disparities in LGBT populations. Each complements the others to yield a more comprehensive approach to understanding lived experiences and their impact on LGBT health. The life-course perspective focuses on development between and within age cohorts, conceptualized within a historical context. Sexual minority stress theory examines individuals within a social and community context and emphasizes the impact of stigma on lived ex-
periences. Intersectionality brings attention to the importance of multiple stigmatized identities (race, ethnicity, and low socioeconomic status) and to the ways in which these factors adversely affect health. The social ecology perspective emphasizes the influences on individuals’ lives, including social ties and societal factors, and how these influences affect health. The chapters that follow draw on all these conceptualizations in an effort to provide a comprehensive overview of what is known, as well as to identify the knowledge gaps.
This report is organized into seven chapters. Chapter 2 provides context for understanding LGBT health status by defining sexual orientation and gender identity, highlighting historical events that are pertinent to LGBT health, providing a demographic overview of LGBT people in the United States, examining barriers to their care, and using the example of HIV/AIDS to illustrate some important themes. Chapter 3 addresses the topic of conducting research on the health of LGBT people. Specifically, it reviews the major challenges associated with the conduct of research with LGBT populations, presents some commonly used research methods, provides information about available data sources, and comments on best practices for conducting research on the health of LGBT people.
As noted, in preparing this report, the committee found it helpful to discuss health issues within a life-course framework. Chapters 4, 5, and 6 review, respectively, what is known about the current health status of LGBT populations through the life course, divided into childhood/adolescence, early/middle adulthood, and later adulthood. Each of these chapters addresses the following by age cohort: the development of sexual orientation and gender identity, mental and physical health status, risk and protective factors, health services, and contextual influences affecting LGBT health. Chapter 7 reviews the gaps in research on LGBT health, outlines a research agenda, and offers recommendations based on the committee’s findings.
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