Key Terms & Definitions from the NASEM Report
Guiding Principles from the NASEM Report
NASEM Recommended Measures

The SGMRO, along with 18 other NIH components, commissioned the National Academies of Sciences, Engineering, and Medicine (NASEM) to review current measures and the methodological issues related to measuring sex as a nonbinary construct, gender identity, and sexual orientation in surveys and research studies, in administrative settings, and in clinical settings. The report, Measuring Sex, Gender Identity, and Sexual Orientation, was released in March 2022 and the SGMRO considers it to be the most recent evidence-based foundation for advancing our work in field of sexual and gender minority data and measurement.

Using our Measurement & Data website, you will be able to access resources on recommended and validated measures for sexual orientation and gender identity (SOGI), along with guiding principles for data collection and recommendations for future measurement-related research provided by the 2022 NASEM report. The 2022 NASEM report recommendations are broadly applicable in a variety of settings or as a foundation for testing modifications or alternatives with special populations like youth or proxy reporting, and there may need to be minor adaptations for use across different contexts.

When implementing the NASEM recommended measures, or any questions on sexual orientation, gender identity, or sex characteristics, in situations where the user can directly respond to the questions without an interviewer or intermediary, they should know that, like most demographic data, it is voluntary. Where it is required to select an answer to progress, either in a self-report electronic health record where people enter their own information or a self-administered health survey or research, it’s vital that the response options of “I don’t know” and “prefer not to answer” be included.

Links to the NASEM 2022 Report and Supplementary Briefs

Overall NASEM Report

Issue Brief: Measuring Sexual Orientation

Issue Brief: Measuring Intersex Status or Differences in Sex Development

Issue Brief: Measuring Gender Identity and Transgender Experience

Issue Brief: Gender Identity and Sexual Orientation in an Indigenous Context

Recommendations: Measuring Sex, Gender Identity, and Sexual Orientation (2022)

Key Terms & Definitions from the NASEM Report

Before identifying measures to collect data related to sex, gender identity, and sexual orientation, it’s important to understand and define the constructs being measured.

Definitions and Terminology for “Sex,” “Gender,” and “Sexual Orientation”

NOTE: Populations and identities listed are a subset of all sexual and gender minority populations.
ªDSD, differences in sex development

Guiding Principles from the NASEM Report

The 2022 NASEM report provides five guiding principles that should be considered at all stages on implementing sexual and gender minority measures across all types of data collection. Using the principles of inclusiveness, precision, autonomy, parsimony, and privacy to guide the development of new or advancing and improving on older measures will ensure both rigor and research integrity.

  • inclusiveness icon

    People deserve to count and be counted (inclusiveness). A key purpose of data collection is to gather information that can help researchers, policy makers, service providers, and other stakeholders understand diverse populations and create policies, programs, and budgets that meet these populations’ needs. Both quantitative and qualitative data, regardless of how they are collected, reflect the identities and experiences of people and communities that deserve to be heard and respected. Everyone should be able to see themselves, and their identities, represented in surveys and other data collection instruments.

  • precision icon

    Use precise terminology that reflects the constructs of interest (precision). Sex, gender, and sexual orientation are complex and multidimensional, and identifying the components of these constructs that are of interest and measuring them using appropriate terminology is critical for collecting reliable data. Questions should clearly specify which component(s) of sex, gender, and sexual orientation are being measured, and one construct should not be used as a proxy for another.

  • autonomy icon

    Respect identity and autonomy (autonomy). Questions about dimensions of identity, by definition, are asking about a person’s sense of self. Data collection must allow respondents to self-identify whenever possible, and any proxy reporting should reflect what is known about how a person self-identifies. All data collection activities require well-informed consent from potential respondents, with no penalty for those who opt out of sharing personal information about themselves or other household members. This principle encompasses data collection for legal documents intended for individual identification; external authorization or attestation should not be required when someone reports, or wishes to change, their gender identity.

  • parsimony icon

    Collect only necessary data (parsimony). Data collection is not an end in itself: data should only be gathered in pursuit of a specific and well-defined goal, such as documenting or understanding disparities and inequities between populations or meeting legal reporting requirements, and data that are not essential to achieve that goal should not be collected.

  • privacy icon

    Use data in a manner that benefits respondents and respects their privacy and confidentiality (privacy). Once data are gathered, they should be analyzed at the most granular level possible, and research findings should be shared back with respondents and their communities to ensure that they benefit from data they have shared. Throughout all analysis and dissemination steps, sex, gender, and sexual orientation data, which may be sensitive and vulnerable to misuse, must be used, maintained, and shared only under rigorous privacy and confidentiality standards. Similarly, when data are collected in tribal nations, rigorous preapproved tribal research and data collection, analytic, and dissemination protocols should be followed to ensure data integrity and community benefit and to ensure rigorous privacy and confidentiality standards are upheld.

NASEM Recommended Measures

A committee of experts convened by the National Academies reviewed current measures and methodological issues related to measuring sex, gender identity, and sexual orientation. Below you will find a summary of key conclusions and overarching recommendations related to SOGI data collection, recommended measures for each construct, and proposed future directions related to measurement of these constructs. A PDF version of these recommendations is available to download.

KEY CONCLUSIONS & RECOMMENDATIONS:

  • The standard for the National Institutes of Health should be to collect data on gender and report it by default.
  • Collection of data on sex as a biological variable should be limited to circumstances where information about sex traits is relevant, as in the provision of clinical preventive screenings or for research investigating specific genetic, anatomical, or physiological processes and their connections to patterns of health and disease. In human populations, collection of data on sex as a biological variable should be accompanied by collection of data on gender.
  • The panel strongly encourages the reporting of the use of these write-in categories in published tabulations of responses.
  • A Two-Spirit response category for AI/AN respondents in both the sexual orientation and gender identity groups should be included in situations when Indigenous populations can identify themselves. Because Two-Spirit is a term by and for Indigenous peoples and is culturally anchored with particular meaning and, potentially, social status, it is not appropriate for use by non-Indigenous populations.
  • Response options of “I don’t know” and “Prefer not to answer” are only used where it is required to respond. The panel strongly encourages the continued testing and use of a write-in sexual orientation response option.

CATEGORY

RECOMMENDED MEASURE

FUTURE RESEARCH RECOMMENDATIONS

NONBINARY SEX

Have you ever been diagnosed by a medical doctor or other health professional with an intersex condition or a difference of sex development (DSD) 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? 
Yes 
No 
(Don’t know)* 
(Prefer not to answer)* 

  • The use of a single-item intersex/DSD status question.
  • The quality of the three measures of intersex/DSD status that were identified by the panel as having the strongest grounding in evidence to determine which measure most effectively identifies the intersex/DSD population in a range of settings.
  • The effects of including definitions and examples of terms used in intersex status questions, such as “intersex,” “DSD,” and specific intersex variations.
  • The prevalence of “intersex” as a gender identity both among people with known intersex variations and people without intersex variations.
  • The effects of proxy reporting of intersex/DSD status, particularly of parents reporting their children’s status.

GENDER IDENTITY

Q1: What sex were you assigned at birth, on your original birth certificate? 
Female 
Male
(Don’t know)* 
(Prefer not to answer)* 

Q2: What is your current gender? [Select one] 
Female 
Male 
Transgender 
[If respondent is AIAN:] Two-Spirit 
I use a different term: [free text]
(Don’t know)* 
(Prefer not to answer)* 

  • Testing of gender-specific response categories for the current gender question, along with optimal answer option ordering, and the utility of a confirmation question. Testing should also confirm optimal ordering of the two-step components in both survey research and in other settings.
  • Alternative two-step gender measures that offer an inclusive count of both cisgender and transgender people for use in contexts where the privacy and confidentiality of sex assigned at birth responses cannot be assured or where specific information on sex assigned at birth is unnecessary but identifying transgender people for the purposes of service delivery or monitoring disparities is still desirable.
  • Assessment of the inclusion of “nonbinary” in the gender identity response categories.
  • Periodic reevaluation of write-in gender identity
  • responses and how they change over time and may vary in different settings; periodic reevaluation of listed response options is also recommended.
  • Evaluation of the utility of including a nonbinary response when asking about sex assigned at birth, particularly if nonbinary sex markers on birth certificates become more widely available, and consideration of how nonbinary gender identities should be counted in terms of cisgender or transgender status.
  • Expanded testing of the recommended two-step gender measure beyond general population assessments of English-speaking adults, including updated translations and studies of response equivalence.
  • Further testing among youth and in settings where a single respondent replies for all household members.
  • Further testing a “select all that apply” option for the current gender question.

SEXUAL ORIENTATION

Which of the following best represents how you think of yourself? [Select ONE]: 
Lesbian or gay 
Straight, that is, not gay or lesbian 
Bisexual 
[If respondent is AIAN:] Two-Spirit 
I use a different term [free text] 
(Don’t know)* 
(Prefer not to answer)*

  • Alternate wording for the “straight” response option that performs equally    well as, or better than, the existing recommendation for English- and non- English-speaking populations without using language that negates gay or lesbian identities.
  • The ordering of response categories, including sorting response categories based on population prevalence.
  • Guidelines for measures that capture other dimensions of sexual orientation, including sexual behavior and sexual attraction: in particular, asexual identities.
  • The utility of including sexual orientation response options that may be more prevalent in subsets of the LGBTQI+ population.
  • The performance of existing measures and identification of best practices for how to assess sexual minority status among adolescents.
  • How reporting of sexual orientation is affected when reporting is done by proxy, such as when a single household respondent responds on behalf of all household members.

*Response options that are in parenthesis should only be included when an answer must be selected to proceed to the next question (e.g. computerized assessments) or when those response options are required of all demographic questions.

**The two parts of the two-step gender identity question should appear together since they are two parts of the same question. As long as the two parts of the Gender Identity question are presented together, either part of the two-step question can be presented first. However, issues may arise if the two parts of the question are split up without any preamble to indicate that there are two parts to the question.