Progress in SOGI Data Collection: 

Implementing the NASEM Report

Kellan E. Baker, PhD, MPH, MA

• Executive Director, Whitman-Walker Institute

• Member, NASEM Committee on Measuring Sex, Gender Identity, and 

Sexual Orientation for the National Institutes of Health

kbaker@whitman-walker.org
NASEM 2022 SOGI Report Sponsors

This report was sponsored by 19 Institutes, Centers, and Offices across NIH:

o National Human Genome Research Institute

o National Institute on Aging

o National Institute of Allergy & Infectious Diseases

o Eunice Kennedy Shriver National Institute of Child Health 

& Human Development

o National Institute of Environmental Health Sciences

o National Institute of Mental Health

o National Institute of Minority Health & Health Disparities

o National Institute of Neurological Disorders & Stroke

o Office of the Director, All of Us

o Office of the Director, Chief Officer for Scientific 

Workforce Diversity

o Office of the Director, Division of Program Coordination, 

Planning, & Strategic Initiatives:

▸ Office of AIDS Research

▸ Office of Behavioral and Social Sciences Research

▸ Office of Disease Prevention

▸ Office of Research on Women’s Health

▸ Office of Strategic Communication

▸ Sexual & Gender Minority Research Office

o Office of the Director, Office of Equity, Diversity, & Inclusion

o Office of the Director, Office of Intramural Research, Office of 

Intramural Training and Education
Statement of Task

• 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.

• Produce a consensus report with conclusions and recommendations 

on guiding principles for collecting data on sex, gender identity, 

and sexual orientation and recommended measures for these 

constructs in different settings.
Scope of the Report

• Measures than can be used in the general English-speaking adult 

population 

o More detailed response options may be necessary for measures used within 

LGBTQI+ populations

o Modifications to recommendations may be needed if they are used within 

younger populations

o Also prioritized representation of indigenous sexual and gender minorities

• Focus on measures of identity that can also be used to identify 

sexual and gender minority populations

• Three domains: surveys and research, administrative settings, and 

clinical settings 
Recommendation: Sexual Orientation Identity

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)
Sexual Orientation: Topics for Future Research

RECOMMENDATION 3: To further improve the quality and inclusivity of current measures of 

sexual orientation identity, the National Institutes of Health should fund and conduct 

research on the following topics: 

• Alternate wording for the “straight” response option

• The ordering of response categories

• The addition of response options such as: “queer,” “questioning,” and “same gender 

loving”

• Guidelines for measuring sexual orientation attraction and behavior

• Best practices for collecting sexual orientation information within adolescent populations

• Proxy reporting of sexual orientation identity
Recommendation: Gender Identity

Q2: What is your current gender? 

[Mark only one]

□ Female

□ Male

□ Transgender

□ [If respondent is AIAN:] Two-Spirit 

□ I use a different term: [free text]

(Don’t know)

(Prefer not to answer)

Q1: What sex were you assigned at 

birth, on your original birth certificate?

□ Female

□ Male

(Don’t know)

(Prefer not to answer)
Cross Tabulation of Two-Step Measure

• Cisgender women (female/female)

• Cisgender men (male/male)

• Transgender women (male/female)

• Transgender men (female/male)

• People who can be classified as transgender (trans men, trans 

women, people who identify using the term “transgender”)

• People with nonbinary gender identities (Two-spirit, write-ins)

• GENDER IDENTITY AND GENDER MODALITY
Gender Identity: Topics for Future Research

RECOMMENDATION 5: To improve the quality and inclusivity of the recommended twostep gender measure—sex assigned at birth and current gender—the National Institutes 

of Health should fund and conduct research on the following topics: 

• Gender-based response options (man/woman) and optimal response ordering

• Performance of a “select all that apply” approach for current gender

• Replacing or augmenting the response option “transgender” with “nonbinary” 

• Categorization of nonbinary people vis-à-vis transgender status or identity

• The need for a “nonbinary” response option for sex assigned at birth

• Stability of responses over time

• Alternative two-step measures that can be used in circumstances in which asking 

about sex assigned at birth is inappropriate 

• Best practices for collecting two-step sex and gender information from youth, people 

with limited English proficiency, and with proxy reporting
Intersex/DSD Status: Topics for Future Research

RECOMMENDATION 7: To improve the quality and inclusivity of current measures of 

intersex status, the National Institutes of Health should fund and conduct research on the 

following topics:

• The use of a single-item intersex/DSD status question

• The relative quality of the three measures of intersex/DSD status identified by the panel

• The effects of using terminology such as “intersex” or “DSD” or definitions of these terms 

in question stems or supplemental text

• The prevalence of “intersex” as a gender identity term among people with intersex traits

• Proxy reporting of intersex/DSD status, particularly by parents
1990: Census adds 

“unmarried couple” 

option

1999: NHANES adds 

sexual orientation 

question

2010: Census reports 

first count of same-sex 

married couples

2011: Obama 

Administration 

releases LGBT Data 

Progression Plan

2013: NHIS adds sexual 

orientation identity 

question

2014: BRFSS offers 

SOGI module

2015: NCVS adds 

sexual identity 

question

2016: FCSM releases 

first reports on SOGI in 

the Federal Statistical 

System

2016: SOGI questions 

proposed for American 

Community Survey

2021: Household Pulse 

Survey adds SOGI 

questions

2022: NASEM releases 

Measuring Sex, Gender 

Identity, and Sexual 

Orientation for NIH

2022: Biden 

Administration 

Executive Order 14075 

requires agency SOGI 

Data Action Plans

2023: OMB releases 

Recommendations on 

the Best Practices for 

the Collection of SOGI 

Data on Federal 

Statistical Surveys

2023: White House 

releases Federal 

Evidence Agenda on 

LGBTQI+ Equity 

2023: Federal agencies 

develop SOGI data 

action plans

2023: Census testing 

SOGI questions for the 

American Community 

Survey