Data Inclusion Is Vital for LGBTQI Equality

By Naomi Goldberg

The COVID-19 pandemic put a spotlight on many of the systems that have long failed communities: affordable child care shortages, lack of paid sick time, and the deep disparities in access to health care, particularly for people of color.

For many communities, we have data to help us understand the unique ways the pandemic — and the underlying, deep roots of systemic inequalities — have played out. Yet, for LGBTQI communities, the lack of consistent data about LGBTQI people hampers efforts to advance justice, equity, and inclusion. Despite increasing visibility in our communities and in private surveys like Gallup and Pew, LGBTQI people far too often remain invisible in federal data.

That’s because there remains a lack of consistent, coordinated collection of disaggregated data, including by sexual orientation and gender identity (commonly abbreviated as “SOGI”), across state and federal agencies. When LGBTQI people are not seen and counted, the challenges we experience are rendered invisible and public policies often don’t reflect our needs.

A 2022 report by The Leadership Conference Education Fund provides a current “state of play” and emphasizes the investments needed in federal civil rights data collection. On the one hand, the Youth Risk Behavior Survey conducted by the Centers for Disease Control and Prevention has included questions about sexual orientation since 2015 and a gender identity question since 2017. Those data reveal high rates of suicidal ideation and bullying for LGBTQ youth. The adult Behavioral Risk Factor Surveillance System has included these questions since 2013. Yet just last year, the U.S. Census Bureau for the first time ever included questions that allow for LGBTQ people to be identified in their experimental Household Pulse Survey. These data have yielded important findings, yet they remain the only Census Bureau survey that includes these questions. And many federal surveys simply do not ask questions about sexual orientation, gender identity, or variations in sex characteristics that allow for the identification of LGBTQI people.

There are several ways that the lack of data inclusion limits the ability of policymakers, program staff, advocates, and researchers to fully address the experiences of LGBTQI people.

First, the private surveys that have filled the void rarely have sample sizes large enough to disaggregate communities within the LGBTQI community. This makes it nearly impossible to see the variations, say, between different Asian and Pacific Islander LGBTQI communities. For example, Movement Advancement Project released two reports in 2020 and 2021 analyzing data from a survey conducted by NPR, the Robert Wood Johnson Foundation, and the Harvard T.H. Chan School of Public Health. We found that LGBTQ households, especially those headed by Black and Latino LGBTQ people, had been hit harder by COVID-19. Nearly all (95 percent of Black LGBTQ people and 70 percent of Latino LGBTQ people) said they or someone in their household had experienced a serious financial problem. Because of the sample sizes, we could not report on the experiences of Asian and Pacific Islander LGBTQ people. Private entities collect important data on LGBTQI people, but those sample sizes will inherently be smaller than what the federal government is able to collect and make available. The scale of surveys, such as the American Community Survey, conducted by the federal government offers large samples and robust methodology that allow for data disaggregation and intersectional analysis.

Second, because of the halting of a research agenda and inclusion efforts by the Trump administration, more research and funding investments are needed to adopt and implement the recommendations from the National Academics of Science, Engineering, and Medicine’s (NASEM) groundbreaking 2022 report about collecting data on sexual orientation, gender identity, and intersex characteristics. In response to the NASEM report, more than 190 LGBTQI and allied organizations released an open letter calling for renewed efforts to ensure that surveys, administrative data, and clinical settings include data on sexual orientation, gender identity, and intersex people. The proposed FY2023 Census Bureau budget includes approximately $10 million specifically for sexual orientation and gender identity research for the  American Community Survey, including for testing question wording, translation into different languages, and efforts to increase self-response.

Finally, inclusion of LGBTQI people in federal surveys should happen consistently and in a thorough manner that ensures that the data meet the needs of decision-makers and allow for the enforcement of existing civil rights laws. For example, though the U.S. Department of Housing and Urban Development ruled that discrimination based on sex includes discrimination against LGBTQI people, there remain too few data to examine housing discrimination because HUD’s surveys don’t ask the right questions.

The Biden administration recognizes that data are critical not only in revealing disparities but also in informing interventions. Strong leadership from the Equitable Data Working Group is needed to develop and support strategic investments and inclusion across the agencies and their vast survey landscapes. As a result of a new executive order signed by President Biden earlier this month, a subcommittee will be created and will work with agencies to identify surveys for LGBTQI inclusion. This is an exciting development and signals that there will be more coordinated leadership across the government. And there is a role for Congress, too; last week, the House passed the LGBTQI+ Data Inclusion Act, which would require LGBTQI data to be collected across the federal government. It now heads to the Senate.

Yet, as we mark the second Pride Month celebrated under this administration, we still have a scattershot approach to data collection within the federal government. We know now, more than ever, that data equity and inclusion are necessary to build a better America.

Precisely because the federal government has been an architect and protector of structural racism, inequality, and other injustices, it now has an obligation to do all it can to correct these inequities and to create a society in which all people can thrive.


Naomi Goldberg is the deputy director and LGBTQ program director at Movement Advancement Project, which is a member organization of The Leadership Conference on Civil and Human Rights.


This blog is the second in the series ”Data Disaggregation Deconstructed,” which explores how data disaggregation in various policy areas can enhance equity. The series is based on The Leadership Conference Education Fund’s report “Information Nation: The Need for Improved Federal Civil Rights Data Collection.” The report urges the Biden administration to restore and expand the scope, frequency, and public accessibility of federal data collections in order to identify equity gaps and solutions to remedy them.