LGBT Populations and Health Disparities

Sexual orientation is the enduring emotional, romantic, or sexual attraction to other people, and gender identity refers to one’s innermost concept of self as male, female, a blend of both, or neither. Importantly, one’s gender identity can be the same or different from their sex assigned at birth [6]. Consistent with the language used in the research literature, we will use the acronym LGBT to refer to SGM individuals while recognizing that these terms do not adequately reflect the heterogeneity of self-identifications or behaviors within these populations [Reference Haas7] (see https://www.lgbthealtheducation.org/wp-content/uploads/2018/03/Glossary-2018-English-update-1.pdf for a glossary of terms from the National LGBT Health Education Center).

Recent population-based studies have found that LGBT represent sizable minority groups in the United States. Although precise estimates are difficult to obtain, current estimates suggest that 4.1% of adults (approximately 10 million individuals) living in the US self-identify as LGBT [Reference Gates8]. Data from the Youth Risk Behavior Surveillance System, a nationally representative sample of 15,624 high school students, found that 8% identify as lesbian, gay, or bisexual [Reference Kann9]. A Williams Institute report suggests an additional 0.07% of youth ages 13 to 17 identify as transgender [Reference Herman10].

Emerging data from epidemiological studies have confirmed earlier descriptive research documenting elevated prevalence rates or risk factors for a range of physical and mental health conditions among LGBT populations including depression, cancer, asthma, cardiovascular disease, human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS), stroke, obesity, depression, and suicidality, to name a few [Reference Fredriksen-Goldsen11]. These disparities in physical and mental health outcomes based on sexual orientation and gender identity have been observed across the life course, with LGBT adolescents and transgender individuals at particular risk [2]. In response to accumulating data, Healthy People 2020 for the first time identified sexual orientation as one of the five key demographic factors associated with poor health outcomes among Americans, paving the way for increased recognition of the health needs of this highly underserved population [12].

The factors associated with observed disparities among LGBT populations are complex and are likely influenced by the same sets of inter-related social, economic, and environmental factors that drive health disparities among other underserved populations [Reference Simard13]. However, unique risk factors experienced by sexual and gender minorities also exist. Exposure to bias-based stressors also extends to LGBT youth who experience higher rates of familial rejection, homelessness, school-based bullying, and school dropout compared with their heterosexual peers [Reference Musu-Gillette, Zhang, Wang, Zhang and Oudekerk14]. LGBT youth of color may be at an even higher risk for poor academic outcomes due to the corrosive influences of bullying and race-based discrimination [Reference Kosciw15]. These unique stressors experienced at the interpersonal, community, and institutional levels have direct implications for both short and long-term health risk behaviors [Reference Corte16]. In addition to the risk of poor health outcomes due to engagement in health risk behaviors, a strong evidential foundation supports the associations between chronic stress and inflammatory processes leading to chronic diseases including cancer [Reference McEwen17].

Despite known health disparities, the inclusion of LGBT populations in clinical research as well as LGBT-specific research protocols is limited. Funding for LGBT focus research has also been limited. A recent review reported that LGBT studies account for just 0.5% of funded NIH studies, with the majority of these funded grants focused on issues related to the prevention and treatment of HIV/AIDS [Reference Coulter18]. As a result, the majority of LGBT research unrelated to HIV/AIDS is hampered by small convenience samples, lack of comparison groups, and the absence of explanatory models [Reference Bostwick29]. Combined, the above factors have resulted in inadequate information by which to develop effective and evidence-based interventions to address the specific needs of LGBT populations.

Consistent with the recommendations of the Institutes of Medicine (2011), [2] the NIH, [Reference Perez-Stable4] and the 21st Century Cures Act, [Reference Hudson and Collins5] additional high quality research is needed to better understand the origins of these disparities and to develop and test effective interventions to prevent and/or narrow observed differences in health risk behaviors and outcomes. Increased engagement of LGBT populations is within the mandate and scope of national Clinical Science and Translational Award (CTSA) programs.

Theoretical Frameworks

Theoretical frameworks are formulated to explain, predict, and understand behavior, and to make transparent the assumptions underlying the study of a specific problem. Many of the existing frameworks for understanding individual-level predictors of health and health risk behaviors among adults in general can also be applied to research on LGBT populations (i.e., Transtheoretical Model of Behavioral Change [Reference Prochaska and Velicer19]). Despite the utility of individual-level theories of human behavior, social factors including education, racial segregation, and poverty account for over a third of the total deaths in the United States each year [Reference Galea20]. In response, health disparity researchers are moving beyond the exclusive focus on individual-level predictors of risk to evaluate the influence of social determinants on persistent health inequalities. Similarly, there have been recent calls for the systematic study of the influence of social determinants (economic stability, neighborhood and physical environment, education, community and social context, and the health care system) on LGBT health inequalities [Reference Matthews, Breen and Kittiteerasack21].

In addition, the 2011 IOM report on LGBT research identified four conceptual frameworks viewed as highly applicable to understanding the mechanisms underlining observed health risk behaviors and outcomes among LGBT populations [2]. The most prominent of these frameworks is the Minority Stress Model [Reference Meyer22]. A key assumption of this model is that LGBT-specific stress is unique and additive to general stressors that all people experience. Stress can come from both distal processes (clear cases of discrimination or violence) and proximal processes (perceptions of stigma) that impact the well-being of LGBT-identified individuals and communities [2]. In addition to direct experiences with discrimination, indicators of minority stress that have been examined among LGBT populations include concealment/fear of rejection, internalized homophobia, childhood adversity associated with gender nonconformity or sexual orientation, institutional discrimination, and other forms of discrimination not associated with sexual orientation (e.g., age, sex, and race/ ethnicity).

Intersectionality theory [Reference Crenshaw23] posits that LGBT individuals must negotiate multiple complex social identities including their race/ethnicity and their gender identities which may lead to varied experiences, resources, adaptation strategies, and resiliency levels. Critical to this theory is that assertion that multiple group identities—each impacted by related systems of oppression—intersect to create a whole that is different from the component identities. All these levels have an impact on one’s health, and LGBT people can face stigma in their interaction with each one. Life course theory emphasizes how a person tends to revisit experiences they have had at earlier points in their life, and how events can have different impacts depending on when they happen in a person’s life [2]. This theory is useful in analyzing how sexual orientation and gender identity affect individuals at different stages of their lives. Finally, the Social Ecological Model [Reference McLeroy24] has also been proffered as a lens by which to understand the health and health outcomes of LGBT populations. This model considers the complex interplay between individual, relationship, community, and societal factors. It allows researchers to understand the range of factors that put people at risk for poor health or serve as protective factors for health and well-being.

Measuring Sexual Orientation and Gender Identity

Historically, the availability of population-based epidemiological data on the health and health risk behaviors of LGBT individuals has been extremely limited. For example, the National Health Interview Survey only started asking about sexual orientation in 2013, and it does not inquire about gender identity [Reference Dahlhamer, Galinsky, Joestl and Ward25]. Nevertheless, the inclusion of sexual orientation and gender identity as basic demographic measurements in research is increasingly commonplace and is considered best practice by a number of organizations, such as the American Psychological Association, and many others [26]. The systematic incorporation of sexual orientation and gender identity questions across health research studies is necessary to understand the full spectrum of health issues facing SGM populations, most especially due to consistent findings of a wide range of health disparities and inequities among LGBT groups [2].

Asking about Sexual Orientation

The development and consistent use of validated measures of sexual and gender identity facilitates the collection of high quality research. Research has established that sexual orientation consists of at least three dimensions: identity, attraction, and behavior [Reference Laumann27]. When possible, the recommendation is to assess all the three dimensions [28]. Different dimensions may be more or less associated with the specific health outcomes of interest, and asking about all three can help identify health risks and protective factors that may not be obvious. For example, in a study of mental health outcomes in the United States that considered associations across all the three dimensions of sexual orientation [Reference Bostwick29], the authors found that women who had sex with only women had significantly lower odds of lifetime mood disorders than other women. But, when assessing outcomes by sexual identity, women who identified as lesbian had significantly higher odds of a lifetime mood disorder compared with heterosexual women. Had the original survey not asked about sexual behavior in addition to identity, these differences would have been missed.

Recommendations regarding best practices for the wording of questions about sexual orientation in large surveys come primarily from a 2009 Williams Institute report [Reference Ramirez-Valles44]. (see Table 1). For sexual identity, the recommended question is: “Do you consider yourself to be: a) Heterosexual or straight; b) Gay or lesbian; or c) Bisexual?” This avoids using the term “sexual orientation,” which can confuse respondents. There is some debate as to whether or not to include additional response options for “other,” “don’t know” and/or “unsure,” as these responses would need to be coded or recoded after the fact, or in some instances, may be discarded altogether. However, in light of the dynamic and changing nature of sexual identity labels, including growing attention to those who self-identify as asexual [Reference Bogaert30], including the response option of “other (please specify),” would allow respondents to write-in the sexual identity label that they use and provides for the most succinct yet inclusive manner in which to ask about sexual orientation identity. The inclusion of the write-in option was recently endorsed in a white paper prepared by Federal Interagency Working Group on Improving Measurement of Sexual Orientation and Gender Identity in Federal Surveys [31].

Table 1 Recommended measures of sexual orientation and gender identity

The recommended question to ask to assess the sexual behavior is: “In the past (time period, e.g., “year”) who have you had sex with? a) Men only, b) Women only, c) Both men and women, d) I have not had sex.” Rather than providing a definition of “sex” in the question itself, which has been found to create more confusion than clarity, the question leaves the decision up to the respondent as to how they define sex [Reference Ramirez-Valles44]. As noted, this question (and all questions that ask about behavior) should be temporally bound. The time period will depend upon the health issue being studied and other research-related factors. The recommended phrasing, however, does not allow the respondents to indicate transgender-identified or nonbinary individuals as sexual partners. As such, further question development is required to more fully capture the range of human sexualities. One possibility is adapting the measure from Herbenick et al. described below to sexual behavior. Until this or another question is psychometrically tested, however, we cannot give a clear recommendation on how to include trans and nonbinary individuals.

Although sexual attraction is often the dimension least likely to be captured in health surveys, it has particular utility when working with younger populations, who may still be forming their identity and/or may not be sexually active [Reference Austin32]. Until recently, sexual attraction questions used in large-scale surveys have only allowed respondents to note attraction to either women or men, and have not provided options that include attraction to persons who identify outside of those two categories. In order to capture a more complete picture of sexual attraction, we recommend the following question: “Which of the following people do you find yourself feeling sexually attracted to? Please check all that apply. Women/females, Men/males, Transgender women, Transgender men, Genderqueer/nonbinary individuals, and Other (please specify).” This is a newer measure reported by Herbenick et al. based on the National Survey of Sexual Health and Behavior that has not been tested as thoroughly as the identity and behavior measures; however, as noted, it improves on questions typically used (e.g., National Survey of Family Growth) by expanding options beyond just male and female (Herbenick, D., Dodge, B., Fu, T. C., Reece, M., Sanders, S., & Fortenberry, J. D. (2015). National Survey of Sexual Health and Behavior (data file). Unpublished raw data.)

Though the best practice is to include questions that capture all the three dimensions of sexual orientation in surveys, due to limited resources or concerns about survey length, investigators may want to include a single question. In this instance, we recommend asking about sexual identity. Sexual identity should be standard when assessing the demographic make-up of study samples or clinic intake forms, just like age, race, and education.

Community Engagement

Similar to other underserved and marginalized communities, researchers interested in focusing on LGBT populations may face difficulties in identifying and recruiting participants for research. Community engagement is a promising way to include more LGBT individuals in research. Community engagement can be understood as a strategic process aimed at establishing “collaboration between institutions of higher education and their larger communities (local, regional/state, national, and global) for the mutually beneficial exchange of knowledge and resources in a context of partnership and reciprocity [36] .” At its core, community engagement seeks to achieve equitable, meaningful, active community participation in all the phases of the research process [37] and highlights community strengths to accelerate improvements in health. Benefits of a community engaged approach to research include greater participation rates, increased external validity, decreased loss to follow-up, and the development of individual and community capacity [Reference Bodison38]. Community engagement can also foster trust between communities and academic partners, particularly when there is a history of distrust [Reference Wallerstein and Duran39]. The establishment of community advisory boards (CABs) is a proven strategy for increasing community engagement in research [Reference Newman40]. A CAB is usually a specialized entity assembled in a particular community for a particular research project; CABs tend to have homogeneous membership deriving from the topic of the search study [Reference Gonzalez-Guarda41]. A recent publication has described the development and evaluation of community engagement advisory boards for CTSAs; this process has applicability for engaging with the LGBT communities [Reference Matthews42].

There are myriads of avenues for partnership and community engagement with organizations serving the needs of LGBT individuals and communities. Currently, there are numerous national LGBT organizations with branches or affiliations in the majority of all US states (www.lgbtcenters.org/LGBTCenters). Organizations also exist that are internationally focused (Centerlink), address disease-specific issues (National LGBT Center Network), are policy focused (Pride Action Tank and the Williams Institute), and professional organizations for LGBT health care providers (Gay and Lesbian Medical Association). In addition, many national organizations have participated in research and other outreach efforts to address LGBT health concerns (e.g., American Cancer Society). Incorporating the elements of community-based participatory research into LGBT health disparities research also provides an opportunity to have LGBT community members and stakeholders involved in all aspect of the research including prioritizing and developing research questions [Reference Wright43].

Recruitment and Retention

A substantial amount of planning must go into sampling, recruitment, and retention of LGBT participants. Drawing a representative sample of LGBT individuals is expensive and difficult [Reference Ramirez-Valles44]. Most of the published research on this population has relied on convenience sampling, venue-based sampling, and random-digit-dialing methods [Reference Diaz45]. Respondent-driven sampling (RDS) has emerged as an alternative for sampling hidden populations. RDS is a chain-referral method that helps assess and control selection bias, thus making it possible to derive population estimates [Reference Heckathorn46]. RDS has been used successfully in studies involving gay and bisexual men and men who have sex with men [Reference Deiss47]; however, recruitment outcomes associated with RDS approaches in studies involving young men who have sex with men [Reference Kuhns48] and lesbians [Reference Martin, Johnson and Hughes49] have been less successful.

Research teams can take several steps to foster trust with potential participants. Teams should be transparent about their motivations for undertaking the research project and what they hope to get out of it. They should also be aware of the reputation of the researcher and the institution, and be prepared to discuss potential participants’ concerns. Having at least some recruiters who share characteristics with the population being studied, such as LGBT status, can go a long way to improving recruitment. Although best practices have not been established for the recruitment and retention of LGBT individuals into research studies, successful strategies include clinic-based recruitment, active community outreach, passive community outreach, and social media. Clinic-based recruitment may include flyers and television announcements in the waiting room, letters to patients, and clinical staff referrals, particularly in settings that cater to the LGBT community. Active outreach involves study staff traveling to locations and events where eligible participants are likely to be and handing out stickers, palm cards, or small token items such as lip balm with study information. These materials are more likely to be successful than larger flyers or brochures at large events (e.g., the Pride Parade), where potential participants will not keep larger items. Passive outreach includes posting flyers in community locations, advertisements in printed publications, and messages to email lists. Photos in flyers can be tailored to include the racial/ethnic groups that are likely to see the flyers in any particular location

In addition to standard media coverage and social media apps like Facebook and Twitter, recent studies have used geo-social mobile applications “apps” like Grindr, Scruff, and Hornet to reach out to potential gay, bisexual, and transgender participants, and men who have sex with men participants [Reference Matthews50]. These apps allow users to create a profile and utilize the phone’s location to introduce users in close physical proximity to each other. If users both users like each other’s picture and profile, they can chat. Though these very popular apps are often used for romantic pairings, researchers can use them to share study information. Recruiters can create profiles with study information, go to targeted locations, and use the app’s filters to prescreen users for potential participants. A standardized script can be used to guide interactions with potential participants [Reference Holloway51]. Alternatively, potential participants can reach out to recruiters on the app. These social apps are useful for recruiting gay, bisexual, and transgender populations because users can avoid stigma and control when and how they choose to reveal their identity. In a study by Matthews et al., this method garnered a similar amount of participants as passive outreach, even though it ran for a much shorter time period and was less labor-intensive. Moving forward, geo-social apps represent a discreet way to reach and engage potential participants on their own terms.

Ethical and Regulatory Considerations for Research including LGBT Populations

Conducting research that is representative and inclusive of LGBT populations requires an appreciation of certain ethical issues and the ability to navigate them successfully. Problems securing institutional review board (IRB) approval for studies involving LGBT populations have been documented [Reference Mustanski52]. Researchers have observed that subjective judgments about the appropriateness of or level of risk posed by research on ‘sensitive’ topics such as sex and sexuality, HIV status, and mental health, as well as problematic assumptions about LGBT populations (e.g., more prone to sexual risk behavior), may impact the decisions of IRB members, delay approvals, or prevent research from occurring altogether [Reference Mustanski52]. For IRBs less familiar with LGBT research protocols, collaborating with the IRB when proposing the study, educating the IRB about the potential risks and benefits of the study for the specific LGBT population under investigation, and documenting the team’s expertize in LGBT research can increase likelihood of study and waiver approvals [Reference Mustanski52].

LGBT populations historically have been mistreated in research (e.g., numerous studies testing harmful methods to alter sexual orientation and gender identity) [Reference Murphy53]. In some cases, misrepresentation of research results has contributed to negative societal perceptions of LGBT populations [Reference Martin and Meezan54]. For example, recently a controversial study asserting that children who were raised by LGBT couples had a variety of poor outcomes in adulthood was widely reported as evidence against allowing LGBT individuals legal rights to marry or have children [Reference Regnerus55]. Different researchers later reanalyzed the data and indicated the original findings were likely a result of measurement error and poor methodological choices [Reference Cheng and Powell56], however, the initial study continues to be cited. These factors coupled with heightened concerns about privacy and confidentiality—particularly with regard to LGBT identity or potentially stigmatizing health conditions—can make potential participants wary of research involvement.

Mistrust in research may be greater in some subgroups of the LGBT community (e.g., transgender individuals, people of color) [Reference Owen-Smith57], and researcher transparency about motivations for undertaking the research project, project goals, and their expertize or identification with LGBT communities may foster trust and facilitate participation. In addition, LGBT participants may feel uncomfortable providing their name on a physical copy of a consent form due to privacy and confidentiality concerns. To address this, researchers can consider requesting a waiver of written documentation of consent from the IRB or making the study anonymous.

Certain aspects of a study may run the risk of exposing one’s LGBT identity or other marginalized or stigmatized aspects of their identity, behavior, or health to others. For example, advertisements that use terms or imagery reflective of the LGBT community may be seen by peers, coworkers, or family, and studies that occur in certain locations may inadvertently “out” a prospective participant (e.g., an LGBT community center) [Reference Zea, Reisen and Díaz58]. At the same time, such tailored recruitment materials and LGBT-friendly locations may be appealing for many other participant populations (e.g., out adults, those living in more progressive or urban areas). Thus, depending on the nature and context of the study investigators should consider the extent to which discretion is needed throughout their work. In addition, LGBT communities are small, even in large urban areas. For LGBT-identified researchers or staff, attempts should be made to avoid dual relationships with LGBT participants (i.e., they should not collect or handle identifiable data on a friend or colleague) by widening the scope of recruitment efforts beyond one’s immediate community [Reference Martin and Meezan54].

In research with minors, researchers should consider whether parental permission is necessary and request waivers of parental permission for studies that pose no more than a minimal risk of harm. Requiring parental permission may require youth to disclose their LGBT identity to their parents for the first time, especially if it is clear from the recruitment and informed consent materials that the study is specifically for LGBT populations [Reference Macapagal59]. This is problematic, as youth’s disclosure of LGBT identity to their parents can often place them at risk of experiencing victimization, abuse, and rejection [Reference D’Augelli, Grossman and Starks60]. Requiring parental permission reduces LGBT youth’s willingness to participate in research, which biases samples toward youth who are out, have affirming relationships with their families, or do not engage in high risk behaviors [Reference Macapagal59], which in turn can bias research findings [Reference Liu61]. Studies have found that parents appreciate the potential risks and are generally supportive of waivers of parental permission for research on LGBT youth [Reference Newcomb62]. In the absence of parental permission, researchers can implement protections such as peer advocates or assessments of understanding.

Although ethical issues in LGBT research have long been documented in case studies and reports [Reference Martin and Meezan54], only recently have studies begun to generate empirical evidence on this topic. Opportunities for further research exist, such as ethical issues related to research on gender-affirming interventions among transgender children and adolescents, data sharing of potentially sensitive information such as HIV status or sexual identity, or ethical issues in the use of constantly evolving social media and technologies to advertise, recruit for, and conduct research. Investigators are encouraged to incorporate research relevant to ethical issues into their larger projects—for example, adding questions about comfort or discomfort with novel study procedures or topics, participants’ opinions on adequate protections, or reasons for nonparticipation during the screening process—and to publish the results to advance evidence-based ethical practices for research on LGBT populations.