Sexual and Gender Minorities, Public Health, and Ethics
Abstract and Keywords
Sexual and gender minorities (LGBT persons) are more visible and mobilized than ever. In some countries, that visibility and activism have contributed to the advancement of sexual and gender rights. Nevertheless, and despite those gains, stigma, discrimination, and criminalization of these populations persist and have impeded efforts to address their public health needs. As a result, sexual and gender minorities continue to experience a range of health disparities, and overall face a disproportionately high burden of mental health issues, HIV/AIDS, and other illnesses. This chapter explores core ethical challenges and debates that impact health promotion and prevention efforts with sexual and gender minorities, with a focus on issues arising in public health surveillance and interventions, and on understanding the social and political context that impacts the lived reality of sexual and gender minorities.
(p. 232) Introduction
Sexual and gender minorities—lesbian, gay, bisexual, and transgender (LGBT) persons—are a diverse and multifaceted population. Although the communities that make up this particular population are increasingly visible, engaged, and mobilized, there have been uneven gains in advancing their health status and a range of health disparities remains prevalent. The inequities are exacerbated by a relative paucity of data that could otherwise inform public health surveillance, interventions, and policies unique to the needs of these communities, as well as by structural factors that reinforce health inequities.
Present-day health inequities experienced by sexual and gender minorities have a social and historical precedent that has profoundly shaped their collective story (Mayer et al., 2008; IOM, 2011). For most of the twentieth century in the United States, homosexuality—understood as same-sex desire, attraction, or sexual activity—was seen as pathological (Drescher, 2015) and same-sex behavior illegal (IOM, 2011). The pathologization of homosexuality was challenged by the work of Alfred Kinsey, Clellan Ford and Frank Beach, and Evelyn Hooker, who debunked the psychiatric belief that homosexuality was a sign of psychological disturbance (Drescher, 2015; IOM, 2011). Confronted with mounting empirical evidence at a time of shifting cultural and social norms, fueled in part by events such as the Stonewall Riots in 1969, the American Psychiatric Association removed homosexuality from its Diagnostic and Statistical Manual (DSM) in 1973 (Daniel and Butkus, 2015). The diagnostic revision of homosexuality (p. 233) marked an important shift of the role of medicine in the “social stigmatization of homosexuality” to the moral and political domains (Drescher, 2015; see also Reed et al., 2016; Drescher, 2010).
The history of gender variance and transgender both echoes and provides a contrast to that of homosexuality and sexual orientation. The inclusion of gender identity disorder (GID) in DSM-III in 1980 drew criticism from those in the transgender community who felt that labeling the expression of gender as a symptom of a mental disorder would lead to further stigmatization and harm. Others felt the omission of a formal diagnosis would limit access to critical medical and surgical care (Drescher, 2010). The most recent version of the manual, DSM-5, revised GID to gender dysphoria, intending to depathologize gender variance while improving access to clinical care. DSM-5 continues to classify transgender as a mental disorder. Significantly, in the updated World Health Organization’s International Classification of Diseases (ICD-11) gender incongruence is considered to be a sexual health condition rather than a mental disorder.
The stigma, discrimination, and criminalization experienced by sexual and gender minorities have a deleterious effect on health and are a fundamental cause of health disparities (IOM, 2011; Link and Phelan, 2005). Institutions, attitudes, and perceptions that have evolved in societies that stigmatize sexual and gender minorities have important implications for the ability of public health to address their needs (IOM, 2011). As a result, sexual and gender minorities may be harder for public health to reach, posing a challenge for health surveillance and the development of tailored, culturally contextualized public health interventions.
To understand the health disparities that sexual and gender minorities face, it is essential to acknowledge the homophobia and transphobia of health care systems, and to recognize that health care systems and worldviews of providers arose from, and were developed within, heteronormative cultures and structures. This chapter identifies the key ethical issues and debates their impacts on the advancement of health for sexual and gender minorities. The chapter begins by identifying perspectives on public health discourse—that is, language, meaning, and constructs—pertaining to sexual and gender minorities. It suggests that how identity and behavior are described has important implications for public health inquiry. The second section, drawing on principles of equity and distributive justice, considers health disparities and the social determinants of health affecting sexual and gender minorities.
Next, we consider the moral dilemmas that emerge in public health surveillance, including methodological issues and the challenge of context, and how social and political impediments, such as stigma and criminalization, can prevent protection of the most vulnerable. We explore ethical issues that have emerged in relation to the human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) epidemic as it affects sexual and gender minorities. The chapter concludes with a discussion of how frontline research in partnership with these populations can lead to best practices in public health. It offers options that enable an inclusive, culturally competent, affirming public health for all.
(p. 234) The Sexual and Gender Minority Framework: Defining the Landscape
The language and discourse of sexuality, gender identity, and gender expression are dynamic, evolving, and reflect shifting paradigms of cultural and social meaning. In the Global North lexicon, sexuality and gender-identity diversity is often referred to under the umbrella term of LGBT, encompassing lesbian, gay, bisexual, and transgender—with variants of LGBTI (adding intersex), LGBTQ (adding queer or questioning) , or LGBT+ (adding indeterminate or intersex)—to further distinguish binary from nonbinary, or to describe non-heteronormative and cisnormative (i.e., the alignment of gender identity with assigned sex at birth) notions of gender identity and sexual orientation (Logie et al., 2012). The diversity of characterization and categories across other cultural contexts is vast and has been addressed elsewhere, so the LGBT frame will be used here (Carroll, 2016; Parker, Aggleton, and Perez-Brumer, 2016; Reisner et al., 2016). LGBT represents a diverse population of individuals and groups with a multiplicity of races, ethnicities, and ages, as well as cultural and social constructs of sexuality, gender identity, and gender expression.
Sexuality and sexual orientation are terms used to describe sexual behavior, identity, and attraction to the same sex, another sex, or more than one sex (Richards et al., 2016; Bailey et al., 2016; IOM, 2011). Gender refers to the norms, roles, and behaviors that typically characterize individuals as male or female, genderqueer, or gender nonbinary (Richards et al., 2016). Sexual orientation and gender identity are universal aspects of the self, but they vary greatly in their interpretation and their specificity to different cultural contexts (Bailey et al., 2016). The term transgender describes individuals whose gender identity or expression differs from the sex assigned to them at birth. It may include those who have had gender-affirming chest, breast, or genital surgery; hormonal treatment to masculinize or feminize their body; both; or neither. Transgender people may be sexually oriented toward any gender.
A variety of conditions that lead to atypical development of physical sex characteristics are collectively referred to as intersex conditions or differences of sexual development (DSD) (Malouf and Wisniewski, 2016). These conditions can involve differences of the external genitals, internal reproductive organs, sex chromosomes, or sex-related hormones. These individuals may have undergone genital reconstructive surgery and/or hormone therapy early in life, and they may express a gender identity that is different from that which was assigned at birth.
The use of categorization and the meanings ascribed to sexual and gender minorities, and their variants, must undergo continual evaluation and reflection to ensure ongoing relevance. The allocation of sexual and gender minorities into standardized, replicable, continuous categories, and the omission of context, may fail to capture the diversities that exist within categories as well as the intersections between them (Perez-Brumer et al., 2016). Similarly, categorization with a reliance on behavior as a risk determinant can erase social and cultural contexts (Young and Meyer, 2005).
(p. 235) Intersectionality, a term first coined by civil rights advocate and the legal scholar Kimberlé Williams Crenshaw, makes a useful contribution to the discourse on sexual and gender minorities by offering a way to understand and reflect on the complicated lived reality of individuals (Bauer, 2014; Larson et al., 2016). It suggests that categories of social identity (such as gender, sexual orientation, age, and race) are inextricably linked to social structures and systems of power and representations of dominance, privilege, and oppression in ways that are dynamic and contextually grounded. Inclusion, exclusion, marginalization, and disadvantage are therefore not static, inevitable, or silo concepts, but may be experienced simultaneously at any given point. Intersectionality guides a more nuanced system of inquiry that is not reliant on dichotomous categories or a layering of multiple categories in an additive manner (e.g., black race plus female plus impoverished equals disempowered), but instead sees social inequity as mutually constitutive (Larson et al., 2016). Intersectionality acknowledges complex configurations of social determinants of health, as well as how these social constructs produce health inequities and directly impact sexual and gender minority health. The emphasis is on the embeddedness of identity within social constructs that are contextual and dynamic, rather than universal.
Health Disparities and Inequities of Sexual and Gender Minorities
Justice is a core value and guiding principle of public health, as it seeks to enable the collective advancement of health for all while minimizing systematic inequities and disparities. Lawrence Gostin and Madison Powers (2006, 1054) describe these as the “twin moral impulses” motivating public health. Dan Beauchamp, one of the earliest scholars of justice and public health, observed that the critical barrier to achieving improvements in public health is not a lack of technology but rather an unwillingness by the advantaged to give up any of their advantages to benefit those worse off. He describes this unwillingness as “a social ethic that unfairly protects the most numerous or most powerful from the burdens of prevention” (Beauchamp, 1976, 101). Justice, understood as a fair and equitable distribution of the benefits and burdens of society, or “the fair disbursement of common advantages and the sharing of common burdens” (Gostin and Powers, 2006, 1054), is an antidote to this social ethic. When public health is guided by or pursues justice, it can help to overcome or eliminate powerful social, political, and environmental forces that create, shape, and sustain patterns of systematic disadvantage (Beauchamp, 1976; Gostin and Powers, 2006).
A central issue of justice for sexual and gender minorities is the disproportionate burden of disease and ill health they often experience as a result of issues such as access to and the quality of health care. These challenges, and the resultant health deficits, can be experienced differently by individuals within the group, or according to cultural context and geographical location. Some groups of individuals within sexual and (p. 236) gender minority populations have increased risks and needs, which have been expressed in health prevalence data and disease burdens (Daniel and Butkus, 2015; Cochran and Mays, 2017). For example, gay men and other men who have sex with men, and transgender women who have sex with men, have increased rates of sexually transmitted infections (STIs) and bear a disproportionate burden of HIV (Beyrer et al., 2012; Baral et al., 2013). Disparities in modifiable cardiovascular disease risk factors such as smoking, obesity, and stress have been identified among lesbian and bisexual women based in the United States (Simoni et al., 2017; Caceres et al., 2017). Mounting data support an increased burden of depression and suicidality among transgender populations globally (Grant et al., 2011) compared to their cisgender counterparts. Although health equity in sexual and gender minorities is still a relatively recent area of investigation, such findings highlight the significance of differences attributable to social harms of discrimination and stigma. Data on other disease systems and disparities are more sparse and urgently needed.
Public Health Research and the Challenge of Context
Understanding the nature of the health burden and inequities that sexual and gender minorities face is critical to framing public policy discussions accurately and targeting public health interventions appropriately. There are several significant challenges to collecting robust data to inform health knowledge of this population.
First, as highlighted in the 2011 Institute of Medicine (IOM, now known as the National Academy of Medicine, or NAM) report on the health of LGBT people, there is a challenge to develop and standardize valid and reliable measures of sexual orientation and gender identity (Temple-O’Connor and Wehr, 2013). In part, this may be due to the allocation of sexual and gender minorities to discrete categories, or not adjusting for socially significant variables, that obscure the unique vulnerabilities within the group (Fiereck, 2015). For example, transgender women have historically been categorized according to assigned sex at birth and have been conflated with men who have sex with men. This conflation is troublesome, as it limits insight into attributable differences due to sex or gender, the contribution of specific social and structural determinants of health, and the responsiveness and effectiveness of the public health intervention (Poteat, German, and Flynn, 2016; Perez-Brumer et al., 2016; Reisner et al., 2016; Fiereck, 2015).
There are related issues affecting the integrity and robustness of epidemiological inquiry that must be resolved. As Fiereck (2015, 32) notes, “the effacement or elision of differences between sex and gender” influences how the disease of interest is mapped in the population. It is clear that contextualization of language and meaning in sexuality and gender frame public health surveillance efforts, and a lack of consistency in standardized (p. 237) methods and survey instruments across studies limits the generalizability and relevance of findings (Reisner et al., 2016).
Second, the way in which sexual and gender minorities are conceptualized, and the terminology and categories used to describe the individuals within the population, is dynamic, and this presents both a challenge and an opportunity for the use of epidemiological methodologies for health surveillance. The challenge is how comprehensively to ascertain variations and differences that exist between groups at a global level, and how these differences shape the public health response and effort.
This final point engages with the notion that those who bear the burden of the research (or intervention), particularly when targeted toward the most vulnerable, must also be the ones with the greatest likelihood to benefit from it (Cohen, Kass, and Beyrer, 2007). While sexual and gender minorities are situated in culturally specific contexts, they are concurrently connected to greater political and structural inequalities that occur at a global scale (Padilla et al., 2007). It is therefore incumbent on epidemiologists, public health researchers, and practitioners continually to reflect on and critically engage with cultural meanings, geographical variations, and social constructs of sexuality, identity, and behavior, and with how these impact health burdens and inequities (Perez-Brumer et al., 2016; Conron et al., 2014). This pursuit ensures that both quantitative and qualitative dimensions are captured, and it levers public health researchers and advocates into uncharted areas of inquiry or advocacy.
Stigma, Criminalization, and the Risk-Benefit Ratio
Systematic and persistent violence and discrimination leveled at individuals on the basis of their sexual and gender identity remains one of the great challenges for the human rights agenda. Despite efforts to advance the health of sexual and gender minorities in some countries, they have been stymied by repugnant laws and policies that criminalize same-sex behavior as well as gender nonconformity. In 2016, seventy-two countries recognized by the United Nations (UN) had laws criminalizing homosexuality between consenting adults (Carroll, 2016). The vast majority of these countries are in Africa, Asia, and the Middle East (Schwartz et al., 2015). A further number of nations and political entities, including Russia and Gaza/Palestine, prohibit same-sex relations or have laws against “homosexual propaganda.” Thirteen countries have a death penalty that may be applied as a sanction for same-sex sexual acts (Carroll, 2016). In the United States, the US Supreme Court ruled antisodomy laws unconstitutional in 2003; as of 2016 the thirteen states with such laws had not formally repealed them (Carroll, 2016), so they remain visible yet unenforceable in practice. Criminalization strengthens stigmatization, which in turn fortifies discrimination and vulnerability.
(p. 238) Criminalization by nation-states on the basis of sexual identity and behavior contravenes basic human rights instruments that safeguard the rights of sexual and gender minorities, with a profound effect on access to public health goods and interventions. States, as signatories to international treaties and covenants, assume obligations and duties to protect and promote the full realization of rights, including the right of everyone to the enjoyment of the highest attainable standard of physical and mental health articulated in the International Covenant on Economic, Social and Cultural Rights, Article 12(1) (UN, 1967). The legal obligations of states, under international law, prohibit discrimination on the basis of sexual orientation or gender identity and outline obligations to protect individuals from homophobic and transphobic violence; prevent inhuman, cruel, or degrading treatments; repeal laws that criminalize homosexuality, including arbitrary arrest and detainment; and safeguard freedom of expression, association, and peaceful assembly for all sexual and gender minorities (OHCHR, 2012).
However, the legal obligations of states neither guarantee nor provide moral guidance on how states should behave and act to secure health and well-being for all. Zahn et al. (2016) note that even in settings such as South Africa, where protective legal frameworks are in place, including protection of confidentiality and disclosure, these protections alone are insufficient to address violence, discrimination, and attitudes affecting sexual minorities. In a study in Russia on men who have sex with men, the risk of violence and discrimination perpetrated toward study participants was so great that the risks of proceeding did not justify the potential benefits of the findings, and the study was subsequently withdrawn (Hylton et al., 2017).
There are important ethical considerations concerning how to engage and operate in public health practice and research in settings where the population of interest is not recognized or is repressed within the target community. There are examples in which a government has actively opposed public health research and interventions directed toward sexual and gender minorities, based on the belief that it would legitimize the existence of these populations in their country (Amon et al., 2012). If the protective function of public health is abandoned, and the position of the state is given primacy over the health of marginalized groups, who, or what institutions, will protect the well-being of sexual and gender minorities? Responding to changing contexts and awareness of when the safety of individuals is compromised by public health research or intervention has been a devastating reality of operating in contexts that favor stigma and criminalization.
Studies have consistently demonstrated that sexual and gender minorities who encounter high levels of experienced, anticipated, or internalized stigma and discrimination are more vulnerable to negative health outcomes (Poteat et al., 2015; Winskell and Sabben, 2016; Zahn et al., 2016). In one study on HIV risk among men who have sex with men in Senegal, it was noted that even when preventive services were available, fear of violence and arbitrary arrest and related loss of trust in institutions led to decreased uptake of health care and interruptions to service provision (Poteat et al., 2011). The 2013 Same-Sex Marriage Prohibition Act in Nigeria extended existing criminalization of same-sex sexual practices by prohibiting participation in organizations and other (p. 239) forms of association that are supportive of same-sex relationships and sexual practices. Gay men and men who have sex with men experienced greater stigma and discrimination, reported an increased fear associated with seeking health care, and experienced an absence of safe spaces to socialize with others (Schwartz et al., 2015).
By contrast, in Sweden, one of the most progressive countries with regard to sexual and gender minorities, a supportive policy environment has contributed to a reduction of health vulnerabilities experienced by sexual and gender minorities. The removal of the requirement for a sterilization order to change the gender marker on legal documents is a policy that represents the conditions necessary for broader health equity for sexual and gender minorities, and for the fulfillment of basic human rights for all (EU FRA, 2015).
Case Study: HIV/AIDS
The HIV/AIDS epidemic has been at the epicenter of multiple ethical issues concerning the health of sexual and gender minorities. The ongoing global epidemic of HIV reinforces the centrality of justice in the public health mission. Debates related to public health surveillance and intervention testing, consent, disclosure, disproportionate burdens, access to treatment, and stigma have profoundly shaped the global response to HIV among sexual and gender minorities (Cohen et al., 2007; Bayer and Fairchild, 2004).
The earliest cases of AIDS were identified in otherwise healthy young gay men in New York and California in 1981. What followed, with devastating impact, was a tsunami of loss and collective trauma as the epidemic took hold. Gay men, bisexual men, and other men who have sex with men were the most affected. In the public domain, homosexuality became synonymous with AIDS, and this indelibly marked the global response to the epidemic, which stigmatized those living with the virus, limited effective public health responses in some cases, and drove coercive and punitive ones in others (Beyrer et al., 2012). The gay rights movement undoubtedly had an impact on the epidemic from early on, with politically mobilized groups driving advocacy, access, and treatment and prevention strategies (Bayer and Fairchild, 2004). However, at the same time, the gay community was confronted with the paradox that increased social organization, empowerment, and visibility also translated to increased stigma and discrimination, and to fewer protections at a local level. This legacy continues in the present day.
At the global level, the trajectory of HIV has been slowed by advances in understanding of biomedicine and modes of transmission, and by public health–based interventions to mitigate impact, such as the use of condoms, routine testing, and access to treatment (Cohen et al., 2007). The emergence of primary prevention and treatment as prevention, including access to and use of lifesaving antiretroviral drugs (ARVs) to decrease susceptibility to the virus in the uninfected or infectiousness in those living with HIV, has been similarly transformative (Caceres et al., 2015). The efficacy of pre-exposure prophylaxis (PrEP), a combination of two HIV medicines made available to individuals at very high risk for HIV, has been demonstrated, but as a preventive public health strategy PrEP (p. 240) has not been universally adopted, and the uptake at the country level is slow (Beyrer et al., 2016).
Despite gains in arresting transmission at the global level, the epidemic continues unabated among sexual and gender minorities in places where stigma and discrimination prevail, and in key populations of gay men, other men who have sex with men, and transgender people who have sex with men (Beyrer et al., 2016). In 2014, more than 90 percent of new HIV infections in Central Asia, Europe, North America, the Middle East, and North Africa were among key populations, which also included sex workers, people who use drugs, and incarcerated persons (UNAIDS, 2016).
Remaining ethical challenges for the HIV response include advancing access to HIV prevention and treatment options to ensure sexual and gender minorities are not left behind. The cornerstone achievement will be to situate the public health agenda—discourse, surveillance, and intervention—in the cultural, geographical, and structural contexts that define the lived reality of sexual and gender minorities. Such a response will need to be supported by community partnerships to inform research methods and data points required to develop service models that maximize benefit for all.
Best Practices for Gender and Sexual Minority Health
Safe environments and spaces to access health care initiatives that engage sexual and gender minorities are fundamental to advancing the health of sexual and gender minorities. The disproportionate burden among this group of HIV and mental health challenges, including depression, anxiety, and suicide risk, have been well documented. There are limited data on specific health conditions and risk determinants in underrepresented population groups, including those pertaining to lesbians, bisexual females, and transgender populations, and to adolescent sexual and gender minorities. Understanding intersecting themes of identity, culture, geography, and structural disadvantage is critical to guide a more nuanced approach aimed at resolving key ethical issues in public health surveillance, policy, and programming.
For researchers, ethics review board members, and those seeking to improve the health and well-being of sexual and gender minority communities, there are a number of important best practice approaches that have emerged in the past decades of sexual and gender minority health research.
First and foremost is the importance of context. A relatively low-risk epidemiologic study that includes capture of personal identifiers and assessment of sexual identity or practices may be of little concern in settings where same-sex behavior is legal and sexual and gender minority persons are protected by the state. The same study, however, may be life-threatening for participants in states like Iran, Saudi Arabia, or the Sharia states of northern Nigeria. In contrast, transgender identity and persons may be acceptable in Iran, but face intense medical, social, and community opprobrium in Jamaica, where (p. 241) “cross-dressing” has led to mob violence and extrajudicial execution (US Department of State, 2015).
The centrality of context leads to a second tenet: the need for public health professionals to work closely and consistently with sexual and gender minority communities, leaders, and activists in assessing the risks and benefits of health research or interventions. Community members typically know a great deal more than professional voices about the realities on the ground, what is safe and not safe, and who is best placed to implement needed work. Arguably, more than for any other population, the centrality of genuine community participation is essential to ensuring minimization of risks and maximization of benefits, both in public health research and practice.
Both contextual awareness and community engagement must also be sustained over time, as context is dynamic, can change rapidly, and requires vigilance on the part of investigators and human subjects committees. In Russia, the passage of new national antigay legislation by the Putin administration, and the widespread tolerance for antigay vigilante violence, including the physical intimidation of gay men and staff members at sexual and gender minority–friendly clinics, has led to a rapidly deteriorating safety environment. Such secular trends can develop quickly and significantly alter risk-benefit ratios.
Addressing the needs of sexual and gender minority minors and adolescents is also an area fraught with numerous special challenges and concerns. One particularly contentious issue is the current debate over “conversion therapy” or “reparative therapy.” These purported therapies have the goal of attempting to change sexual orientation to heterosexual, and gender-variant gender identity to sex assigned at birth. There is a clear scientific consensus that there is no evidence for efficacy of such therapies, and abundant evidence for harm (IOM, 2011). Indeed, they have been made illegal in a number of US states and in other countries, based on the evidence of an array of harms. Yet they remain common, widely practiced in many settings, and the subject of intense political debate. Because minors may be subject to these abuses when consent is obtained from parents, youth are particularly vulnerable to these violations of the right to personhood.
In conclusion, sexual and gender minority health is an emerging area of public health that urgently needs expansion, investigation, and engagement. There is an ethical imperative to address the health disparities faced by these individuals, families, and communities, through research, policies, and interventions that are responsive to particular needs, attentive to the social and political context, and guided by the principles of social justice, health equity, and the protection of basic human rights.
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