Erasure and Health Equity Implications of Using Binary Male/Female Categories in Sexual Health Research and Human Immunodeficiency Virus/Sexually Transmitted Infection Surveillance: Recommendations for Transgender-Inclusive Data Collection and Reporting

Abstract

I n this commentary, we discuss the health equity implications of collecting and reporting data stratified by binary male/female categories in sexual health and sexually transmitted infection (STI)/ human immunodeficiency virus (HIV) research and surveillance without meaningful inclusion of transgender, nonbinary, and gender diverse identities. Numerous institutional bodies have recommended collecting and reporting data disaggregated by trans-inclusive categories, including the National Institutes of Health and the National Academy of Sciences. 1,2 However, a review of articles published by Sexually Transmitted Diseases in 2020, for example, yielded 121 articles (of 166 that included human participants) that only reported data by male/female categories and conflated sex assigned at birth with gender (eg, by referring to people assigned female at birth as women, and people assigned male at birth as men). In addition, core surveillance systems and large national data sources, such as the Centers for Disease Control and Prevention 2018 STD Surveillance Report and Health People 2030, also continue to report data in this way.Trans adults comprise 0.6% of the population, or at least 1.4 million adults living in the United States, and a recent study estimated that approximately 1.2 million adults in the US identify as nonbinary. [3][4][5] In addition, an estimated 1.3% to 2.7% of adolescents in the United States identify as trans or nonbinary. [6][7][8] Trans and nonbinary people are disproportionally burdened by poor health From the

Geographic Variation in HIV Testing Among Transgender and Nonbinary Adults in the United States

“…In addition, trans-inclusive data collection and reporting are critical for monitoring the success and reach of these strategies. 48…”

Mapping Community-Engaged Implementation Strategies with Transgender Scientists, Stakeholders, and Trans-Led Community Organizations

“…Despite a wide diversity of gender identities and expression, PrEP research has largely focused on transfeminine adults. While this focus on transfeminine adults is likely due to the epidemiological evidence of high HIV burden among transfeminine individuals, it also reflects a paradigm in clinical research in which trans communities are perceived as ancillary to other key communities placed at risk [ 13 , 19 ]. A 2021 scoping review focusing specifically on trans populations examined 667 HIV prevention articles that sampled at least one trans participant based on assigned sex at birth found that “38.5% subsumed transgender participants into cisgender populations (most frequently combining trans women with cisgender men who have sex with men), 20.4% compared transgender and cisgender participants, and 41.1% focused exclusively on transgender women” [ 20 ••].…”

“…One recent study reported that transfeminine individuals, particularly those in the USA, have an estimated HIV prevalence of 14.1% [ 12 ••]. While existing data are scarce as a result of gender-blind surveillance systems [ 13 ], the limited data on transmasculine and nonbinary individuals who have sex with men show alarmingly high HIV incidence and prevalence as well [ 12 ••, 14 ]. Notably, the inequity in HIV prevalence is even more pronounced among minoritized ethnoracial groups [ 12 ••], within the trans community with estimates for HIV prevalence among Black, Indigenous, and Latine transgender women being substantially high [ 12 ••].…”

“…These social and structural vulnerabilities place transgender and nonbinary communities at elevated risk for adverse behavioral and health outcomes, which further perpetuate to HIV inequities in this population [9 One recent study reported that transfeminine individuals, particularly those in the USA, have an estimated HIV prevalence of 14.1% [12••]. While existing data are scarce as a result of gender-blind surveillance systems [13], the limited data on transmasculine and nonbinary individuals who have sex with men show alarmingly high HIV incidence and prevalence as well [12••, 14]. Notably, the inequity in HIV prevalence is even more pronounced among minoritized ethnoracial groups [12…”

Three recommended inclusive language guidelines for scholarly publishing: Words matter

“…Inclusive language, also referred to as conscious language (Yin, n.d.‐a) or bias‐free language, acknowledges and respects differences and treats people with care. It can make writing more accurate—for example, by acknowledging the limitations of sources of gender data (Tordoff et al, 2022)—and more respectful because it uses terms that groups ask to be described with. Inclusive language also has the potential to help authors reach a wider audience by not unnecessarily excluding people from their descriptions.…”