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:
- Cathy Renna, National LGBTQ Task Force, [email protected]
- Sharita Gruberg, Center for American Progress, [email protected]
- Naomi Goldberg, Movement Advancement Project, [email protected]
- Alesdair Ittelson, interACT, [email protected]
- Aaron Ridings, GLSEN, [email protected]
- Scout, National LGBT Cancer Network, [email protected]
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:
- Visibly affirm to LGBTQI+ communities and people with multiple marginalized identities that they are welcome and that you are an ally;
- Provide internal infrastructure, trainings, and resources to assure this welcome is real;
- Ensure that questions about sex, sexual orientation, gender identity, and intersex status are asked alongside other demographic identifiers; and
- 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 TransLatin@ 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