190 Organizations Call for LGBTQI+ Data Collection as National Academies of Sciences, Engineering, and Medicine (NASEM) Releases Historic Report on Measuring Sex, Sexual Orientation, & Gender Identity

Washington, DC, March 9, 2022 — Today an ad hoc panel of the National Academies of Sciences, Engineering, and Medicine (NASEM) issued a groundbreaking consensus report focused on advancing data collection on sexual orientation, gender identity (SOGI), and sex, including variations in sex characteristics. The report synthesizes existing research, provides detailed recommendations about how to ask these questions, outlines key principles for advancing inclusion for lesbian, gay, bisexual, transgender, and intersex (LGBTQI+) people, and articulates areas for further research.  The report emphasizes that improved and standardized data collection is vital for understanding the challenges LGBTQI+ people face.  

In response to this groundbreaking report, 190 LGBTQI+ and allied organizations today released an open letter calling for renewed efforts to advance SOGI and intersex data inclusion on surveys, in administrative data, and in clinical settings. The letter can be accessed here.  

Data collected by private research firms suggest that there are over 13 million LGBTQ people in the United States, and the population is growing notably. Scientific estimates suggest as many as 2-5 million Americans were born with intersex traits. 

“Now is the time for the Biden administration to implement President Biden’s data equity executive order and commit to adding questions on sexual orientation, gender identity, and variations in sex characteristics to federal surveys and data collection,” said Spencer Watson, Center for LGBTQ Economic Advancement & Research’s Executive Director. “Information collected from national surveys such as the American Community Survey and the 2030 Census will shine a light on the lives and experiences of LGBTQI+ people, and make policy solutions for their unique needs possible. And adding LGBTQI+ measures to existing nondiscrimination data collection will protect LGBTQI+ people and support economic equity for their households and communities.”

To speak with LGBTQI+ experts about data equity and this report, please contact:  

The full letter and list of signatories can be found inline below and as a PDF here.


March 9, 2022

An Open Letter to Health, Education, Corporate, Government & Other Policy Leaders:

The National Academies of Sciences, Engineering, and Medicine have just released the NIH-commissioned expert consensus study report on how to collect data on sex, sexual orientation, gender identity, and intersex status across domains that include clinical settings, population surveys, and administrative forms. This report also highlights future research directions for continuing to advance measurement of these important variables, particularly for transgender, nonbinary, and intersex populations. We, the undersigned organizations, applaud this report and stand unified in declaring that now is the time to begin to routinely collect, analyze, and report these data to help understand the needs and experiences of lesbian, gay, bisexual, transgender, queer, intersex, and other sexual and gender diverse (LGBTQI+) people. 

Data collection is a necessary precursor to addressing persistent discrimination and inequities. Denied routine data collection, LGBTQI+ and allied communities have attempted to combat discrimination without critically needed tools. Health, education, civil rights, anti-violence, economic justice, and social services progress are all reliant on data. The systemic lack of LGBTQI+ data collection has forced many community organizations to launch their own research initiatives, among them: The Trevor Project’s National Survey on LGBTQ Mental Health, GLSEN’s National School Climate Survey, National Center for Trans Equality National Trans Discrimination Survey, and National LGBTQ Cancer Network’s Out Cancer Survey. Yet while these data are heavily relied upon by other organizations, they do not carry the same scientific weight as nationally representative studies; instead, they provide wrenching insights into systemic discrimination and inequities without the heft needed to drive larger policy change and solutions-based funding. 

Two major pieces of information are important to know about LGBTQI+ communities now. First, Gallup’s recent announcement shows the number of people identifying as LGBTQ is rising more rapidly than at any known time in U.S. history. Second, these growing LGBTQI communities are under massive attack from a bevy of anti-LGBT legislation across the country. As just two examples, in recent weeks this is exemplified by the “Don’t Say Gay” bill in Florida and the Texas governor’s efforts to equate gender-affirming medical care with child abuse. 

These initiatives are allowed to flourish not simply because of the people who propose them but also by the many policymakers and other decision-makers who contribute to a culture of invisibility and increased vulnerability by routinely ignoring the importance of data collection on the needs and experiences of LGBTQI+ communities. 

This new report from the National Academies contributes to the growing consensus that data collection on sex, sexual orientation, gender identity, and intersex status is necessary to further inclusion and equity. As more organizations and government entities collect these data as a standard practice, this resource provides an opportunity for each organization to rise to the occasion. Now more than ever, we ask every organization that cares about LGBTQI+ communities to do four things: 

  1. Visibly affirm to LGBTQI+ communities and people with multiple marginalized identities that they are welcome and that you are an ally;
  2. Provide internal infrastructure, trainings, and resources to assure this welcome is real;
  3. Ensure that questions about sex, sexual orientation, gender identity, and intersex status are asked alongside other demographic identifiers; and 
  4. Analyze and share resultant data whenever feasible, with special emphasis on with various intersections of identities (i.e, disability and sexual orientation, race and gender identity, etc). 

We appreciate your consideration of the significant findings from this report and our four requests. Working together, we can make tremendous progress on the data collection front, which in turn can help LGBTQI+ communities to gain needed respect, programs, and resources.

Advocates for Youth

American Trans Resource Hub

Callen-Lorde Community Health Center

Center for American Progress

Center for Black Equity

Center for LGBTQ Economic Advancement & Research

CenterLink: The Community of LGBT Centers

COLAGE

Equality Federation

Fenway Health

FORGE, Inc.

GLAAD

GLMA: Health Professionals Advancing LGBTQ Equality

GLSEN

Howard Brown Health

Human Rights Campaign

interACT: Advocates for Intersex Youth

Justice in Aging

LGBTQ Victory Fund

LGBTQ Victory Institute

Lyon-Martin Community Health Services

Mazzoni Center

Movement Advancement Project

NASTAD

National Association of Social Workers

National Black Justice Coalition

National Center for Lesbian Rights

National Center for Transgender Equality

National Health Law Program

National LGBTQ Cancer Network

National LGBTQ Task Force

National Network for Long COVID Justice

National Women’s Law Center

National Working Positive Coalition

Out To Innovate

PFLAG National

Pride at Work

SAGE

Still Bisexual

The [email protected] Coalition

The Trevor Project

Transhealth Northampton

Whitman Walker Institute

Woodhull Freedom Foundation

1Hood Media Academy

A Better Balance

Ace and Aro Alliance of Central Ohio

Affirmations African American Office of Gay Concern

AIDS Alabama

All Students Count Coalition

AllianceQ – the Disciples

LGBTQ+ Alliance

APLA Health

Arizona Trans Youth and Parent Organization Bergencounty LGBTQ+ alliance

BiNet USA

Bradbury-Sullivan LGBTCommunity Center

Brooklyn Community PrideCenter

Cal Voices

Cascade AIDS Project &Prism Health

Colors+

Corktown HealthCreakyJoints/Global Healthy

Living Foundation

CRUX LGBTQIA+ ClimbingDamien Center

DBGM, Inc.

Diversity Collective Ventura

County Dolan Research International,LLC

Equality California

Equality Illinois

Erie County Democratic Party

LGBTQIA+ Caucus

Erie County HIV Task Force

Erie Gay News

Evaluation, Technical
Assistance, and Data
Integration Program,
Northwestern Institute for
Sexual and Gender Minority
Health and Wellbeing

Fairness West Virginia

First City Pride Center

Florida Social Justice Project

G III Associates

Gay City: Seattle’s LGBTQ
Center

Gay Elder Circle

Gender Spectrum

Georgia Equality

GLIDE

Health Equity Alliance for
LGBTQ+ New Mexicans

Hetrick-Martin Institute

Hispanic Federation

HITNHOMEBOY

Hugh Lane Wellness
Foundation

I Am Human Foundation

JASMYN, Inc.

Kachemak Bay Family

Planning Clinic’s R.E.C.
Room

Lancaster LGBTQ+ Coalition

Lawrence Hall – Chicago, IL

LBGT Physician Assistant
Caucus, Inc.

Let’s Kick ASS AIDS Survivor
Syndrome

Lexington Pride Center

LGBT Center of Greater
Reading

LGBT Center of SE
Wisconsin

LGBT Technology
Partnership & Institute

LGBTQ Center OC

LGBTQ Center of Bay
County

LGBTQ Community Center of
Southern Nevada

LGBTQ+ Spectrum of Findlay

Live Out Loud

MassEquality

Methodist Federation for
Social Action

Michigan Organization on
Adolescent Sexual Health
(MOASH)

Minority Veterans of America

Modern Military Association

Naper Pride

New Mexico Public Health
Association

North Shore Alliance of
GLBTQ+ Youth (NAGLY)

NW PA Pride Alliance
One In Long Beach, Inc.

one-n-ten

Openhouse

Openly Positive Inc

Out & Equal

Out Boulder County

Out in the Open

OutCenter Southwest
Michigan

OutFront Kalamazoo

OutNebraska

Outright Vermont

Pacific Pride Foundation

Pennsylvania Equality Project

Persad Center

PFLAG Spartanburg

PFund Foundation

PLWHIV Caucus

Positive Women’s
Network-USA

Prevention Access Campaign
Pride Action Tank

Pride Center of New Jersey

Pride Center San Antonio

Pride Link

Pridelines

Princess Janae Place Inc

PRISM

PROCEED INC.

QWELL Community
Foundation

Rainbow Community Center
of Contra Costa County

Rainbow Families

Rainbow Health Minnesota
Resource Center

RI Public Health Institute

Roots of Change

Sacramento LGBT
Community Center

SafeNet

San Diego Pride

San Joaquin Pride Center

SAVE – Safeguarding
American Values for
Everyone

SF LGBT Center

SisTers PGH

South Florida Institute on
Aging

Southern Jewish Resource
Network for Gender & Sexual
Diversity (SOJOURN)

SpeakOUT Boston
Spectrum Resource Center -Seattle, WA

The Atlanta Pride Committee

The Center on Colfax,
Denver, CO

The Counter Narrative
Project (CNP)

The Frederick Center

The Gala Pride and Diversity
Center

The Human Rights Alliance

The Montrose Center

The Pride Center at Equality
Park

The Source LGBT+ Center

The South Coast LGBTQ+
Network

The Spahr Center

The Transformation Project

Thriving Mental Health
Counseling NY

Trans Maryland

Transcend Charlotte, INC

TransFamily Support
Services

Transgender Education
Network of Texas (TENT)

The Human Rights Alliance

The Montrose Center

The Pride Center at Equality
Park

The Source LGBT+ Center

The South Coast LGBTQ+
Network

The Spahr Center

The Transformation Project

Thriving Mental Health
Counseling NY

Trans Maryland

Transcend Charlotte, INC

TransFamily Support
Services

Transgender Education
Network of Texas (TENT)

Transgender Resource
Center of New Mexico

Translatinx Network

TransOhio

U.S. People Living with HIV
Caucus

University of Nevada Las
Vegas

University of Texas at Austin

Vivent Health

Washington AIDS
Partnership

Waves Ahead Puerto Rico

We Are Family

West Branch Pride

William Way LGBT
Community Center

Wyoming Equality

Yale University’s Office of
LGBTQ Resources