Lesbian, gay, bisexual, transgender, queer/questioning, intersex, and asexual/aromantic (LGBTQIA+) inclusion in healthcare research and public health initiatives is essential to advancing overall health equity. (Graham et al., 2025; Guidance on Adding Sexual Orientation and Gender Identity Questions to State Medicaid and CHIP Applications for Health Coverage, 2023) LGBTQIA + identifying peoples are an expanding population in the U.S. In 2024, an estimated 7.6% of the U.S. population identified as LGBTQIA+, increasing from 3.5% in 2012, with LGBTQIA + identification being higher for younger generations (e.g., millennials and generation Z). (Jones, 2024; Munz, 2024) This same study points to 0.9% of people in the U.S. identifying as transgender.(Jones, 2024) This change over generations may be due to a combination of the impacts of the HIV epidemic, suicidality rates amongst LGBTQIA + peoples, as well as the historical lack of acceptance.(Bitterman & Hess, 2021; Herman et al., 2022)

However, there is a lack of nationally representative information about the health and wellness of LGBTQIA + populations in the US, overall and within subgroups.(Jones, 2022) Inconsistent or insufficient data collection on the health and wellbeing of LGBTQIA + populations has allowed for ongoing knowledge gaps, limiting public health and medical professionals’ ability to address health needs, and has led to difficulties in addressing disparities. (Dawson et al., 2023; Munz, 2024; State Health Access Data Assistance Center, 2021)

In 2011, Health and Human Services (HHS) considered including sexual orientation and gender identity (SOGI) in standardized federal data collection alongside race, ethnicity, sex, primary language, and disability. (HHS Implementation Guidance on Data Collection Standards for Race, Ethnicity, Sex, Primary Language, and Disability Status, 2011) At the time, SOGI questions were not included across surveys, and sex was redefined a ‘biological sex,’ separating from gender identity and sexual orientation.(HHS Implementation Guidance on Data Collection Standards for Race, Ethnicity, Sex, Primary Language, and Disability Status, 2011) Shortly after this, HHS conducted a Data Progression Plan Around Sexual Orientation and Gender Identity inclusion which resulted in the first sexual orientation question being included in a federal survey, the National Health Interview Survey. However, no questions were added that pertained to gender identity or transgender status.(Grennlee, 2017; LGBT Policy Coordinating Committee, 2016; Miller & Ryan, 2011; Sexual Orientation Information Background, 2016; State Health Access Data Assistance Center, 2021) Later in 2016, the Office of Management and Budget’s (OMB) Federal Interagency Working Group on Measuring Sexual Orientation and Gender Identity released multiple documents addressing the lack of data on SOGI populations. (State Health Access Data Assistance Center, 2021) These reports 12 cover federal survey’s inclusion of sexual identity (n = 12), sexual attraction (n = 3), sexual behavior (n = 4), and gender identity (n = 6).(Current Measures of Sexual Orientation and Gender Identity in Federal Surveys, 2016; Evaluations of Sexual Orientation and Gender Identity Survey Measures: What Have We Learned?, 2016; Toward a Research Agenda for Measuring Sexual Orientation and Gender Identity in Federal Surveys: Findings, Recommendations, and next Steps, 2016; State Health Access Data Assistance Center, 2021) Also in 2016, the Centers for Medicare & Medicaid Services (CMS) added a requirement that electronic health records would allow users to record SOGI data, though this was not a requirement for providers to collect SOGI data from every patient.(Standards for the Electronic Health Record Technology Incentive Program, 2010, p. 495) Additionally, the Health Resources and Services Administration (HRSA) also began requiring SOGI data as part of standard demographics reporting for patients age. (Program Assistance Letter, 2016)

To address this issue of inconsistent SOGI inclusion in federal surveys, in 2022, President Biden issued an executive order for federal agencies which included a mandate for OMB to “publish a report with recommendations for agencies on the best practices for the collection of [SOGI] data on Federal statistical surveys”.(Exec. Order No. 14075, 3 C.F.R., 2022) This executive order both acknowledged that LGBTQI + experiences around systemic discrimination as well as directed heads of federal agencies to review internal policies and use their authority to expand access to comprehensive healthcare; prevent and address homelessness and housing instability; protect LGBTQI + identifying students and educators in educational institutions; explicitly combat conversion therapy; and ensure that LGBTQI + identifying children did not face discrimination in the child welfare or juvenile justice systems. This was followed by a report on equitable data collection in 2023 by the Subcommittee on Sexual Orientation, Gender Identity, and Variations in Sex Characteristics Data.(Federal Evidence Agenda on LGBTQI + Equity, 2023) While both reports point to the need for more data collection on sexual orientation, gender identity, and sex characteristics, these efforts centered only on some aspects of LGBTQIA + identity.(Exec. Order No. 14075, 3 C.F.R., 2022; Federal Evidence Agenda on LGBTQI + Equity, 2023) Measurement of LGBTQIA + identities and experiences helps public health professionals better understand the behaviors, disparities, experiences, and health of LGBTQIA + peoples and therefore their ability to improve health for the public at large.

Since the beginning of 2025, the landscape around LGBTQIA + measurement and inclusion in federal health surveys has drastically changed. Numerous executive actions have occurred that impact the functionality and effectiveness around LGBTQIA + populations and their inclusion in health programming, services, funding, and research.(Dawson & Kates, 2025; Gerstein, 2025; Todd, 2025) Additionally, data sets have been impacted by the new administration through federal level data manipulation. (Dawson & Kates, 2025; Freilich & Kesselheim, 2025; Gerstein, 2025; Todd, 2025) These anti-LGBTQIA + actions not only impact the present systems and policies that support LGBTQIA + peoples today, but will have negative impacts on LGBTQIA + populations for years to come.(How State Policy Affects the Well-Being and Relocation of LGBTQ + Young People, 2025; Tran & Gonzales, 2025)

In this study, our team aimed to quantify the extent to which federal health surveys fielded prior to current anti-LGBTQIA actions in the federal government included items pertaining to LGBTQIA + identities and experiences. Drawing on queer theory, we defined nine domains for which inclusion was identified: Sex, Gender Identity, Gender Expression, Sexual Attraction, Sexual Orientation, Romantic Attraction, Romantic Orientation, Partnership, and Sexual Activities/Behaviors. Queer theory examines and critiques structures and systems that define the societal norms around gender and sexuality, allowing researchers and advocates to look outside traditional sexuality and gender binaries. This lens is essential when looking at the inclusion of LGBTQIA + identifying peoples to see who is included outside of cis- hetero-normative structures.

Domains were developed based on queer theory peer-reviewed literature in the effort to create an inclusive series of domains that captured the varying experiences and identities of individuals under the LGBTQIA + umbrella. Many studies point to the need for differentiation between sex assigned at birth in relation and gender identity, creating the ‘Sex’ and ‘Gender’ domains. Additionally, gender expression is distinct from gender identity and is a way one can communicate to others about their gender, leading to the creation of the ‘Gender Expression’ domain.(Glossary of Terms, 2025; “Understanding Transgender People, Gender Identity and Gender Expression,” 2024; Malatino & Stoltzfus-Brown, 2020; Moseson et al., 2024) The split attraction model differentiates between sexual and romantic attraction.(Winer, 2024) Additionally, literature about sexual fluidity makes a clear distinction between attraction and orientation.(Katz-Wise & Hyde, 2017) As such, we define four distinct domains: ‘Sexual Attraction,’ ‘Sexual Orientation,’ ‘Romantic Attraction,’ and ‘Romantic Orientation’ domains. Sexual fluidity literature also parses how attraction and orientation differ from behaviors, which informed our definitions of the ‘Partnership’ and ‘Sexual Activities/Behaviors’ domains.(Katz-Wise & Hyde, 2017)

Survey items included in the questionnaires were coded by two study members (XX and XX). The coders utilized deductive coding using the Sex, Gender Identity, Gender Expression, Sexual Attraction, Sexual Orientation, Romantic Attraction, Romantic Orientation, Partnership, and Sexual Activities/Behaviors domains, which are based on LGBTQIA + research and queer theory (Table 1).(Glossary of Terms, 2025; Resources for Improving Demographic Data Quality, 2024) Each survey item was assigned to one domain (Appendix A).

To be included, items had to explicitly and directly measure one of the specified domains. Domains pertaining to demographics and those pertaining behaviors were distinguished. For example, an item about the respondent’s sexual experiences with people of other genders would be coded as Sexual Activities/ Behaviors, rather than Sexual Orientation.

This team excluded introductory statements, items that were used to collect identifiable information that are not included in the available data and questions verifying previous responses. If a question was repeated based on a response to a previous item (e.g. At the time you began living together, were you and he engaged to be married or did you have definite plans to get married? (N^TH HUSBAND)), it was counted only once. Questions that did not directly ask about the survey respondent – such as those about partners, family, or household members – were also excluded. In surveys where alternate versions of the same question were tested, the different question versions were treated as a single item because the respondent would only ever be prompted to answer one version. Further, if the same or equivalent question was asked across several versions of a survey, it would only be coded once (e.g. the ‘male’ and ‘female’ National Survey of Family Growth (NSFG) questionnaires; age-specific National Immunization Survey (NIS) questionnaires).

Team members (XX and XX) met biweekly to rectify coding differences and discuss individual findings. Questions were included based on mutual agreement that they belong under the defined domains to be included in this analysis. While coding disagreements rarely occurred, when coding differences persisted after discussion, reviewers consulted with the other coauthors (XX and XX) for additional feedback and perspectives.

No survey questionnaire included items from all domains, and none measured Gender Expression, Romantic Attraction, or Romantic Orientation. NSFG and PATH had items pertaining to the greatest number of domains (n_domains = 5). The most represented domains were Sex (n_surveys = 9) and Partnership (n_surveys = 9). Federal surveys missing the most domains include PRAMS and NSDUH, which did not have questions about Sex, as well as NSCH and NIS which did not have questions about Partnership.

NSCH, MCBS, and PRAMS did not include Sexual Orientation or Gender Identity items. NHANES did not include a Sexual Orientation item, but did include an item about Gender Identity. Conversely, NSFG and YRBSS included an item about Gender Identity, but not Sexual Orientation.

Our findings show that before 2025, many national health surveys incompletely capture constructs like Sex, Gender Identity, Gender Expression, Sexual Attraction, Sexual Orientation, Romantic Attraction, Romantic Orientation, Partnership, and Sexual Activities/Behaviors. These changes to federal data collection and dissemination will impact our future understanding of LGBTQIA + health at the federal level. Our data shows that LGBTQIA + identifiers were incorporated into data collection processes amongst most reviewed surveys. However, based on the current administrations attacks on LGBTQIA + populations, we will likely miss these mechanisms of understanding LGBTQIA + populations moving forward. (Dawson & Kates, 2025; Gerstein, 2025; How State Policy Affects the Well-Being and Relocation of LGBTQ + Young People, 2025; Todd, 2025; Tran & Gonzales, 2025) This not only impacts our ability to understand many aspects of LGBTQIA + population health but also impacts future research investigation and funding opportunities for LGBTQIA + focused researchers.

However, Biden-era recommendations for greater inclusion of LGBTQIA + identities and populations are under active attach under the Trump Administration. (Dawson & Kates, 2025; Gerstein, 2025; How State Policy Affects the Well-Being and Relocation of LGBTQ + Young People, 2025; Todd, 2025; Tran & Gonzales, 2025) Executive orders, administrative changes, and funding cuts have already begun to impact federal research and development across topics and communities, with LGBTQIA + populations being disproportionally impacted. (Cahill & DiBlasi, 2024; Cox et al., 2025; Dawson & Kates, 2025; Freilich & Kesselheim, 2025; Tran & Gonzales, 2025) A study of government data set manipulation between January 20, 2025 and March 25, 2025 found that data manipulation is occurring on the federal level.(Freilich & Kesselheim, 2025) Of the 232 datasets reviewed 49% of the data sets had been “substantially altered”. (Freilich & Kesselheim, 2025) Of the 114 identified altered data sets, 93% had the word “gender” switched to “sex”.(Freilich & Kesselheim, 2025)

Even if federally disseminated surveys were to capture Sex, Gender Identity, Gender Expression, Sexual Attraction, Sexual Orientation, Romantic Attraction, Romantic Orientation, Partnership, and Sexual Activities/Behaviors moving forward, LGBTQIA + identifying peoples may choose not to participate or disclose their identities. Beyond cuts to research funding or interference with national survey data, the Trump administration has targeted “promotion of gender ideology” through elimination of nondiscrimination protections in education and healthcare, bans on gender-affirming care, and attempts to erase entire LGBTQIA + populations. These actions have already had consequences on lives and well-being of LGBTQIA + identifying people and may dissuade this population from being honest moving forward as a method of keeping themselves safe, potentially impacting accurate data collection moving forward.

It is thus incumbent upon researchers in the field to implement best practices around LGBTQIA + inclusion.(Keuroghlian et al., 2024) Entire federal data sets are being taken offline and federal employees are making undocumented changes in survey constructs. Researchers at academic, philanthropic, and community-based institutions have the opportunity to ask questions around constructs pertaining to LGBTQIA + populations, going beyond just SOGI. It is even more important now to collect data on LGBTQIA + populations in an expansive, culturally competent way, especially since the federal government cannot be relied on for this research. Health researchers should consider using these domains to guide question and survey development to better understand LGBTQIA + peoples’ health and wellbeing in relation to their research question and aims. Designing survey mechanisms to be inclusive of LGBTQIA + experiences and identities can help ensure future discoveries and interventions that are inclusive of and/or tailored to LGBTQIA + peoples.

Our team acknowledges that not all domains may be pertinent for all surveys; each survey may have specific considerations related to the population or subject matter. Nonetheless, each domain should be considered in relation to the purposes and objectives of the survey and understanding subpopulations who may experience additional health disparities and outcomes. There may be concerns that it is not appropriate to ask youth about LGBTQIA + identification, however, asking questions around sexual attraction can help identify health disparities. For example, several studies have now identified differences in cigarette and e-cigarette use among sexual and gender minority youth.(Kierstead et al., 2024; Park-Lee et al., 2022) There may also be objections related to participants not understanding the concepts when asked about them, but looking to prior research and cognitive interview testing, studies show that a majority of participants understand with minimal distress, no matter their sexuality and age.(Austin et al., 2007; Meyer & Elias, 2022; Rullo et al., 2018; Suen et al., 2022) Additionally, researchers may be concerned about LGBTQIA + peoples uneasiness to respond due to the sensitive nature of the questions, however, sensitive topics are often included in surveys around interpersonal violence, substance use, and sexual activity. In instances of asking questions that are considered sensitive, utilizing techniques to support comfort, honesty, and reducing question avoidance are helpful across topic areas and should be considered.(Brown, 2024; Caltabiano & Dalla-Zuanna, 2013; Hart et al., 2021) There may even push back around how knowing LGBTQIA + identification is not relevant to health, however a study that looked at family formation among polyamorous parents found that polyamorous families were more deliberative and had more positive experiences around family planning, which had been underrepresented in the literature before publication.(Landy et al., 2021) Another study on intersex health found a high prevalence of mental health diagnoses this population.(Rosenwohl-Mack et al., 202 C.E.) While these concerns around LGBTQIA + inclusion may come up, these studies point to the need for research on these specific populations and aspects of identity to better understand the strengths and challenges experienced in the context of health and healthcare.

By not asking questions in relation to LGBTQIA + people and the domains reviewed, understanding of these identities and experiences will continue to go un-measured, resulting in exclusion and erasure.(Human Rights Campaign Foundation, 2021; Kastanis et al., 2019; New Household Pulse Survey Data Reveal Differences between LGBT and Non-LGBT Respondents during COVID-19 Pandemic., 2024) Previous efforts were implemented to include LGBTQIA + identities and experiences through federal SOGI recommendation efforts in the previous administrations. (Dawson et al., 2023; Exec. Order No. 14075, 3 C.F.R., 2022; Federal Evidence Agenda on LGBTQI + Equity, 2023; New Household Pulse Survey Data Reveal Differences between LGBT and Non-LGBT Respondents during COVID-19 Pandemic., 2024) However, these efforts did not fully encapsulate the range of LGBTQIA + identities and experiences, limiting researchers’ current ability to analyze and understand LGBTQIA + populations.

The federal survey mechanisms studied here point to gaps in understanding this population, individual researchers and their labs should consider LGBTQIA + inclusion in their research programs. Through the consideration and implementation of questions under Sex, Gender Identity, Gender Expression, Sexual Attraction, Sexual Orientation, Romantic Attraction, Romantic Orientation, Partnership, and Sexual Activities/Behaviors constructions, this can fill in gaps in understanding LGBTQIA + population health that government systems can no longer. While the dismantling of this form of inclusion is prevalent at the federal level, individual researchers and their labs can make changes to keep LGBTQIA + population health at the forefront.