4

Current State of Data Collection

Data collection on such demographic characteristics as sexual orientation, gender identity, and intersex status is a critical component of improving the well-being of sexual and gender diverse (SGD) populations across all domains of life. Recognizing the central role of consistent, high-quality data in understanding and addressing disparities, the Institute of Medicine (2011) report on LGBT health recommended the routine collection of data on sexual orientation and gender identity in federally funded surveys and electronic medical records (EMRs), as well as the development and standardization of measures of sexual orientation and gender identity. Since that report, there has been significant progress in the development, standardization, and deployment of relevant metrics. These efforts parallel the evolution of measures to assess other aspects of identity that are equally important in understanding disparities affecting SGD populations, such as race, ethnicity, primary language, and disability.¹

Most of the existing research on the demography of SGD populations has focused on sexual orientation identity (e.g., self-identification as gay, lesbian, bisexual, heterosexual, or another sexual orientation) and same-sex sexual behavior and attraction. Another important dimension is measurement of same-sex partnered and marital relationships. More recently, demographic research has also begun to include such measures of gender identity as current gender identity, sex assigned at birth, gender expression, and transgender status. There are no large-scale demographic data available on people who have intersex traits (differences of sex development [DSD])

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¹ See https://minorityhealth.hhs.gov/omh/browse.aspx?lvl=3&lvlid=53.

or others who might identify as intersex, which is a significant barrier to understanding and improving the well-being of intersex populations.

TYPES OF DATA COLLECTION

In 2015 the U.S. Office of Management and Budget convened the Federal Interagency Working Group Improving Measurement of Sexual Orientation and Gender Identity to consider topics related to sexual orientation and gender identity data collection throughout the federal statistical system. According to a 2016 report from this working group (Federal Interagency Working Group on Improving Measurement of Sexual Orientation and Gender Identity in Federal Surveys [hereafter, Federal Interagency Working Group], 2016a), as well as the report from an expert meeting on methods and measurement in SGD populations convened by the Sexual and Gender Minority Research Office (SGMRO) (2018b) at the National Institutes of Health (NIH), data elements that are particularly relevant to SGD population research include but are not limited to

• sexual orientation identity
• sexual behavior
• sexual attraction
• gender composition of partnered and marital relationships
• gender identity
• sex assigned at birth
• gender expression
• transgender status
• intersex status

Although these data elements are often assumed to be associated solely with LGBT, intersex, and other SGD populations, it is important to note that these elements apply equally to all people. Every person has a sexual orientation, a gender identity, and physical sex characteristics, and partnered and marital relationships are a fundamental part of life for many people. Thus, these data elements are relevant for any data collection instrument, system, or activity that includes demographic characteristics.

Similarly, concerns about respondents’ experiences of discrimination as a result of disclosing personal demographic information are not unique to sexual orientation, gender identity, or intersex status. It is essential to ensure that all data collection efforts advance in tandem with laws, policies, and practices that ensure respondent privacy and confidentiality, do not require disclosure of personal demographic information to access programs or services, and provide robust protections from discrimination. It is also important to remember that collecting data about the experiences of people

who may be targeted for discrimination on the basis of such personal characteristics as sexual orientation, gender identity, or intersex status is a crucial component of establishing and enforcing effective nondiscrimination protections.

There are at least three broad domains in which it is important to collect sexual orientation, gender identity, and intersex status data:

1. survey research, including population surveys, needs assessments, and other survey efforts fielded or supported by private entities or any level of government;
2. nonsurvey research, such as clinical trials, biomedical research, program evaluations, and paired testing to assess discrimination in employment, housing, and other areas; and
3. administrative and program data systems, including intake forms, applications for programs, such as Medicaid and Temporary Assistance for Needy Families, and data generated during enforcement processes related to civil rights or criminal justice.

In the health context, these data should also be collected in EMRs and other forms of clinical recordkeeping (Institute of Medicine, 2013). Federal interoperability standards for health information technology have required certified EMR systems to have the capacity to record, change, and access structured data on sexual orientation and gender identity since 2018, and it is incumbent on health care organizations and providers to ensure these fields are active in their EMRs, to seek training on collecting these data in a culturally competent manner, and to incorporate the collection and use of these data in routine clinical workflows² (Cahill et al., 2016). These federal criteria do not require data collection about intersex status, which stymies efforts to assess and improve the health of people with intersex traits.

Data on sexual orientation, gender identity, and intersex status are becoming more available as federally supported surveys and other systems begin to collect them. Table 4-1, although not exhaustive, identifies several large and widely used surveys and other data sources that include some or all of these measures. There are many examples of publicly and privately sponsored data collection activities, however, in which these data are not yet collected. The well-being of SGD populations across the United States could be improved by the addition of sexual orientation, gender identity, and intersex status measures to a wide variety of data collection instruments, including but not limited to those listed in Table 4-1. More detailed descriptions of the types of questions referenced in this table are discussed below.

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² See https://www.healthit.gov/isa/section/sex-birth-sexual-orientation-and-gender-identity.

TABLE 4-1 State of Data Collection on Sexual Orientation, Gender Identity, and Intersex Status in Federally Supported Surveys and Other Data Systems

continued

TABLE 4-1 Continued

continued

TABLE 4-1 Continued

NOTES: CDC, Centers for Disease Control and Prevention; DOC, U.S. Department of Commerce; DOJ, U.S. Department of Justice; DOL, U.S. Department of Labor; ED, U.S. Department of Education; HHS, U.S. Department of Health and Human Services; NSF, National Science Foundation; VA, U.S. Department of Veterans Affairs.

^aData on sexual orientation, gender identity, or intersex status.

^bThis topic is not part of the national survey core measures, but 37 jurisdictions have used a CDC-sponsored question module to gather data about sexual orientation and gender identity; several other states assess sexual orientation or gender identity using their own question designs.

^cMore detailed sexual orientation and gender identity fields are available in a form that scene investigators may use when reporting a violent death (see https://www.lgbtmortality.com/resources).

^dAs of August 2020, not being fielded.

^eA gender identity measure was piloted by 19 jurisdictions (10 states and 9 school districts) on the 2017 survey.

^fThe NHBS-Trans was conducted in 2019–2020 among transgender women in seven states.

METRICS AND MEASUREMENT

General Methodological Considerations

Over the last two decades, numerous studies have assessed the construct validity of sexual orientation and gender identity measures and investigated their performance in the field. Several validated questions, which are described in more detail below, exist and can be readily used to assess sexual orientation and gender identity (Sexual Minority Assessment Research Team [SMART], 2009; Gender Identity in US Surveillance [GenIUSS] Group, 2014; Federal Interagency Working Group, 2016a, 2016b). Aspects of performance that have been evaluated include respondent comprehension, survey breakoff, language considerations, mode effects, and proxy reporting.

Cognitive testing shows that concepts related to sexual orientation and gender identity are broadly comprehensible for the general U.S. population, though it is important to ensure that translations into languages other than English are accurate and culturally appropriate (Clark, Armstrong, and Bonacore, 2005; Ingraham, Pratt, and Gorton, 2015; Ridolfo, Miller, and Maitland, 2012; Stern et al., 2016; NORC at the University of Chicago, 2016). Incidents of survey breakoff (premature termination of the survey by the respondent) in relation to sexual orientation and gender identity questions are infrequent, and item nonresponse is low, ranging from less than 1 percent to just over 6 percent (Case et al., 2006; Conron, Mimiaga, and Landers, 2010; Dahlhamer et al., 2014; Grant and Jans, n.d.; Grant et al., 2015; Ortman et al., 2017; Ridolfo, Miller, and Maitland, 2012; VanKim et al., 2010). This is significantly better than the nonresponse rates for some common demographic questions: for instance, income can have a nonresponse rate of more than 20 percent (Atrostic and Kalenkoski, 2002). Research on mode (e.g., computer-assisted personal interview compared with audio computer-assisted self-interview) has found no main effects of mode on item nonresponse (Dahlhamer, Galinsky, and Joestl, 2019).

In 2016, researchers from the Bureau of Labor Statistics and the Census Bureau conducted cognitive interviews and exploratory focus groups to consider the inclusion of sexual orientation and gender identity questions on the Current Population Survey (CPS), which uses proxy reporting. Most participants did not consider sexual orientation or gender identity questions to be particularly difficult or sensitive either for themselves or for others in their households, and few objected to answering such questions on the survey. The researchers did find that some LGBT individuals, particularly transgender participants, expressed concern that the range of answer options was too narrow (Ellis et al., 2018). This project, however, demonstrated the feasibility of asking sexual orientation and gender iden-

tity questions on surveys that use proxy reporting. Of note, the United Kingdom has included sexual orientation measures in one of its large household surveys using proxy responses since 2014 (U.K. Office of National Statistics, 2020).

Other important considerations in research around sexual orientation and gender identity include the potential fluidity of identity, particularly from the perspective of developmental stages and the life course; probability versus nonprobability sampling; and recruiting techniques, particularly methods for recruiting samples large enough to permit robust analyses of SGD populations by intersecting demographic characteristics, such as race or disability status (Federal Interagency Working Group, 2016c; SGMRO, 2018b).

Another major question is how to balance the need for sufficiently comprehensive response options with the need to work within survey space constraints and to maintain adequate statistical power for analyses. This question relates to the evolving nature of terminology in SGD populations, such as the growing popularity of identities such as “queer” among young people in particular (Federal Interagency Working Group, 2016c; Goldberg et al., 2020); it also reflects the need for response options that can identify groups within SGD populations that are small but may be at high risk of experiencing disparities, such as asexual people (Borgogna et al., 2019), and response options that are culturally specific, such as Two Spirit in Native American communities and same-gender-loving among African Americans (Battle et al., 2002; Bauer et al., 2017). There is also a serious lack of methodological research into how to measure intersex status.

All these methodological questions require exploration in order to optimize the process of collecting, analyzing, and using data on sexual orientation, gender identity, and intersex status to improve the well-being of SGD populations. The need for continued methodological research, however, does not mean that these data should not be collected using tools that are currently available: continuous improvement and refinement of sampling techniques and question designs is a normal and necessary iterative process in any type of demographic data collection (Hughes et al., 2016).

Sexual Orientation

Reliable and validated measures of sexual orientation identity, same-sex attraction, and same-sex sexual behavior are readily available. The 1992 National Health and Social Life Survey, which was conducted by the independent National Opinion Research Center (NORC) at the University of Chicago with support from a variety of private foundations, was one of the earliest U.S. population-based surveys to measure all these traits (Laumann et al., 2008). The National Survey of Family Growth, overseen by

the National Center for Health Statistics (NCHS) at the U.S. Department of Health and Human Services, has also included all these measures since 2002 (Mosher, Chandra, and Jones, 2005). In 2009, Williams Institute at the School of Law of the University of California at Los Angeles (UCLA) convened an expert panel of scholars that produced a consensus report on best practices for measuring sexual orientation in population-based surveys (SMART, 2009).

Following calls for data on sexual orientation and other disparities in Healthy People 2020, the Affordable Care Act, and the 2011 Institute of Medicine report, NCHS conducted extensive testing to develop a sexual orientation question for the National Health Interview Survey (NHIS).³ Successful completion of that testing resulted in inclusion of a sexual orientation identity question on the annual NHIS survey beginning in 2013 (National Center for Health Statistics, 2014). This question format is also used on the National Crime Victimization Survey under the auspices of the U.S. Department of Justice (Truman et al., 2019). Questions relating to sexual attraction and behavior have also become increasingly standardized. The NIH Sexual and Gender Minority Research Office and the Federal Interagency Working Group on Improving Measurement of Sexual Orientation and Gender Identity have both collected and made available examples of questions that can be used to measure sexual orientation identity, attraction, and behavior (as well as gender identity, which is discussed below) (Federal Interagency Working Group, 2016b; SGMRO, 2018a). Of note, it has been recommended that NIH expand its “planned enrollment” policy to include the requirement that NIH-funded research proposals outline how sexual orientation and gender identity data will be measured in the study population or explain why these variables are omitted (Sell, 2017). Such a requirement from NIH and other major research funders would significantly advance the degree to which SGD demographic data are collected in major longitudinal surveys and other types of research.

Gender Identity

In 2014 Williams Institute convened a panel of scholars that produced consensus recommendations for measuring gender identity in population-based surveys (GenIUSS Group, 2014). This report served as a guide for researchers at the UCLA Center for Health Policy Research in conducting extensive testing in order to measure gender identity on the California Health Interview Survey (CHIS), which is a large probability sample of California residents (Grant et al., 2015). The CHIS measure assesses both sex assigned at birth (i.e., on a respondent’s original birth certificate) and

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³ See https://minorityhealth.hhs.gov/omh/browse.aspx?lvl=3&lvlid=57.

current gender identity as male, female, or some other gender. This “two-step” question was developed based on community-driven research in Philadelphia in the 1990s and has since been adopted by such users as the Centers for Disease Control and Prevention (CDC) on its HIV/AIDS adult case report form.

The two-step question is considered better than a single-question design that merely adds transgender response options to an existing binary question about sex or gender (e.g., a single question that asks respondents to indicate whether their gender is male, female, or transgender). In fact, research indicates that the two-step question can result in almost five times more identifications of transgender people than this single-item design (Tordoff et al., 2019). The two-step question allows for transgender people to be identified in either of two ways. First, individuals may indicate that they currently describe their gender identity as “transgender.” Alternatively, individuals may endorse an assigned sex that is different from their current gender identity. The two-step question captures people who identify as a gender different than the one that they were assigned at birth but who may not use the term “transgender” to describe themselves.

The two-step question is also often preferred to a single-item “transgender status” question (e.g., “are you transgender?” with yes/no/not sure response options), though a transgender status question may be more appropriate in contexts where sex assigned at birth is not an important variable. In administrative contexts, limited research has looked at tracking changes to recorded gender over time, for example, in Social Security records (Cerf, 2015). This is not a reliable means of ascertaining self-identification, however, and directly asking the two-step question or a single-item “transgender status” question are the preferred means of incorporating gender identity data in administrative records.

Very little evidence on ordering effects for the two-step question is available. It is important to note, however, that the respondent’s answer to the current gender identity component is of primary importance and is what should inform how fields such as name, gendered honorific, pronoun, and sex are populated. The sex assigned at birth component should be used only to aid in identification of transgender respondents who identify simply as male or female. In clinical settings, sex assigned at birth may also underpin such decision support algorithms as preventive screening indications, but anatomical inventories may be used instead of assigned sex data to inform clinical decision support (Deutsch et al., 2013).

Some studies have also begun to explore measures of gender expression, meaning perceptions of the masculinity or femininity of a person’s appearance, behavior, and mannerisms. Gender expression is an external manifestation of gender identity that has aspects of both self-perception and the perceptions of others (Wylie et al., 2010). In this sense, it draws from

work done by Camara Jones and others around self- and social perceptions of individuals’ race and ethnicity (Jones et al., 2008). Gender expression measures are most often used in the context of research with youth, reflecting the importance of assessing sexual orientation and gender identity at various development stages (Roberts et al., 2013). A measure of socially assigned gender nonconformity has been validated among 18- to 30-year-olds for health research purposes (Wylie et al., 2010).

Intersex Status

Measures to assess intersex status in large-scale demographic studies have been proposed but not yet consistently validated. The 2014 GenIUSS Group report recognized three challenges facing researchers in assessing intersex status: some people with intersex traits do not identify as being intersex; some people who identify as intersex do not have intersex traits; and “intersex” is not a legal assigned sex in the United States. The report therefore recommended that intersex not be included as an option for assigned sex at birth. It also proposed two possible questions that could be the subject of future research:

1. “Have you ever been diagnosed by a medical doctor with an intersex condition or a difference of sex development, or were you born with (or developed naturally in puberty) genitals, reproductive organs, or chromosomal patterns that do not fit standard definitions of male or female?”
2. “Some people are assigned male or female at birth, but are born with sexual anatomy, reproductive organs, or chromosome patterns that do not fit the typical definition of male or female. This physical condition is known as intersex. Are you intersex?”

A community-based group of researchers qualitatively assessed the first question in an online survey of 111 intersex adults (Tamar-Mattis et al., 2018). Overall, 72 percent of participants responded that the question was accessible and important to include in surveys; some responded that the language was too medicalizing and may exclude people who have not had access to care. Further research is needed to assess the validity of population-based measures for intersex status.

Relationship Status

Relationship status is another important component of demographic data collection about SGD populations. Although identifying the gender composition of couples provides a sample of a subset of SGD populations,

it is important to note that this does not actually provide direct information about either sexual orientation or gender identity. The 1990 decennial census was the first U.S. census to include “unmarried partner” as a possible relationship status for individuals in a household. Combining information about relationship and gender of the partner made it possible for the first time to identify same-sex unmarried couples. In general, same-sex couples are identified when the householder (the reference person who fills out the census form) identifies another person in the household as a spouse or unmarried partner and that person is the same sex as the householder. Census Bureau procedures have varied, however, for tabulating responses from same-sex couples in decennial censuses and in the annual American Community Survey (ACS), which replaced the long-form census in 2005. For example, in the 2000 census, the Bureau also included same-sex couples who indicated that they were spouses in counts of same-sex unmarried couples (at that time, marriages of same-sex couples were not legal in the United States). A wide range of federal surveys use this method to identify inter-household relationships, introducing even further variation in measurement approaches. Some of this variation has unfortunately exacerbated problems with measurement and comparability over time and across surveys related to how same- and different-sex couples are enumerated.

In addition to measurement issues raised by how the Census Bureau classifies household composition, small errors in the sex responses of different-sex couples resulted in a large proportion of reported same-sex couples (mostly those who identified as spouses) likely being mis-identified as different-sex couples. Census Bureau analyses suggest that 28 percent of reported same-sex couples in the 2010 census were likely miscoded different-sex couples. The estimated error was even higher in the 2000 census data (O’Connell and Feliz, 2011). Following extensive analyses and testing, the Census Bureau altered possible responses to the relationship to householder question in the 2017 CPS, the 2019 ACS, and the 2020 census to allow respondents to separately identify different- (the surveys use the term “opposite-sex”) and same-sex spouses and unmarried partners. These changes are designed to substantially improve accuracy in measurement of same-sex married and unmarried couples (Kreider, Bates, and Lofquist, 2016).

SUMMARY AND CONCLUSIONS

SGD demographic data collection efforts to date have focused largely on sexual orientation identity. There are a few national surveys that also include measurements of sexual behavior (e.g., the General Social Survey) or both sexual behavior and attraction (e.g., the National Survey of Family Growth). However, even among surveys that include measurement of

sexual attraction and behavior, survey questions largely remain dependent on binary assessments of gender. Research gaps remain in how best to include gender fluidity in the measurement of sexual orientation identity, behavior, and attraction.

Surveys measuring gender identity have increasingly adopted a two-step approach that measures both gender identity and sex assigned at birth, but population-based data on gender diversity remain rare. There are currently no national population-based data that allow for assessment of the demographics of intersex populations. Measurement of SGD populations on longitudinal surveys also remains scarce. These data gaps limit the ability to understand how sexual orientation and gender identity develop over the life course and the roles that these aspects of identity, along with intersex status, play in affecting the well-being of SGD people.

The standardization of measures at the federal level would promote the well-being of SGD populations by advancing the collection of these data both throughout the federal statistical system and in other public and private data collection activities.

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