The Biden administration is moving forward on a plan aimed at improving the federal government's knowledge about the needs of LGBTQ Americans. It is the latest development in a decades-long push by LGBTQ advocates to better track sexual orientation and gender identity data in the U.S.
It is laid out in the first-ever "Federal Evidence Agenda on Lesbian, Gay, Bisexual, Transgender, Queer, and Intersex (LGBTQI+) Equity" document that the White House released January 24. The National Science and Technology Council's subcommittees on SOGI and variations in sex characteristics data and equitable data created the 49-page report.
It is considered a roadmap for how federal agencies can collect SOGI data and other information for use in improving the lives of LGBTQI+ people across the country. The new report follows the issuance last June of a 15-page set of recommendations from the Office of the Chief Statistician of the United States for how federal agencies could gather self-reported SOGI data on their statistical surveys.
The White House noted in a fact sheet it posted to its website last week that the evidence agenda delivers on a commitment President Joe Biden made last Pride Month in an executive order he issued on LGBTQI+ equality. It called the document "an important step forward" in the Biden administration's goal for expanding the federal collection of SOGI data and advancing equity for LGBTQI+ Americans.
Included in it are specific questions that agencies can use to collect SOGI data, and guidelines for how to safeguard respondents' individual privacy, security, and civil rights when seeking such information.
"The hope is that this evidence agenda will help point the way toward agencies across [the] federal government collecting and using this data from external sources," Meghan Maury, a senior policy adviser for data science at the White House Office of Science and Technology Policy, told the website Nextgov.
As the Bay Area Reporter has previously noted in its coverage on the issue, without such detailed information about the LGBTQ community, it is nearly impossible for lawmakers, policymakers, philanthropic entities, and advocates to know what sorts of programs are needed and how much to request in funding for them.
Demographic information is critical
"Demographic data collection is critical for enhancing our understanding of the specific health needs of and inequities faced by the LGBTQI+ community," said Charly Gilfoil, who is gay and is the special projects attorney at the National Health Law Program. "By collecting data on sexual orientation, gender identity, and variations in sex characteristics, advocates and researchers, as well as health care programs, plans, and providers, can make greater strides in improving health and health care for LGBTQI+ folks."
She added that the legal group was "especially encouraged" by the Biden administration's acknowledgment in the report of the need for data privacy and anti-discrimination measures in conjunction with collecting SOGI data. Without such safeguards, LGBTQ people may be reluctant to divulge such personal information about themselves to the government, particularly if they reside in states where lawmakers have been passing laws targeting the rights of their LGBTQ citizens.
"Federal agencies (and all organizations collecting sensitive data) must have stringent practices in place to protect the privacy of LGBTQI+ individuals, respect individual autonomy, and ensure that their data is used ethically," stated Gilfoil. "NHeLP and our partners are excited to release a report series examining how effective and purposeful demographic data collection can foster health equity in a world where privacy and data misuse remains of the utmost concern."
Sean Cahill, a gay man who is director of health policy research at the Fenway Institute in Boston, has been a vocal supporter for the collection of SOGI data for years. He took part in a meeting with federal officials last week about the release of the new report.
"The Federal Evidence Agenda on LGBTQI+ Equity is welcome, substantive evidence of the Biden-Harris administration's strong commitment to LGBTQI+ equity and equality in all government programs," wrote Cahill in an emailed reply to the B.A.R. "We look forward to working closely with the Department of Health and Human Services and other federal agencies as they develop their 'SOGI Data Action Plans' in the coming weeks. There are so many opportunities for the federal government to collect and use SOGI data, including sex characteristics data, to better understand how LGBTQI+ people are accessing government services, and disparities from mortgage loan access to experiences with elder services."
Specifically, Cahill argued that the federal government should be collecting SOGI data as part of the nation's cardiovascular and cancer surveillance systems, and on death certificates. He also called for SOGI data to be collected in COVID-19 testing, vaccination, and care, including on the Center for Disease Control and Prevention's COVID-19 case report form.
As the B.A.R. has extensively reported since 2020, even when state leaders push for the collection of such SOGI data in their states, as is the case in California, those efforts are hindered by outdated survey platforms and other technical glitches.
"We hope that SOGI data collection, use, and reporting will become a standard practice, and not something that we have to push hard to get government agencies to do," Cahill told the B.A.R.
Reached in Ireland by email, where he now lives, retired researcher Gary Gates, Ph.D., a gay man who used to issue reports and studies about the country's LGBTQ community while working for the Williams Institute, the LGBTQ think tank based at UCLA School of Law, told the B.A.R. that it was "about time" for the federal government to get serious about collecting SOGI data.
"While I very much welcome the news that the Biden administration is prioritizing the collection of more and better sexual orientation & gender identity data, I can't help but think it's about time. As policy debates that affect the lives of sexual and gender minorities continue across the U.S., the importance of good data to document their life experiences remains critical," wrote Gates.
He pointed out that similar reports from the National Academies more than a decade ago and two more recent ones it published about the need of SOGI data on LGBTQ individual's well-being and how to measure SOGI data all highlighted the urgent need for high quality LGBTQ demographic information.
"Progress in advancing the collection of SOGI data on US federal surveys has been painfully slow. Let's hope the administration's new efforts will hasten that progress," wrote Gates.
The evidence agenda comes as lawmakers in Congress are calling for SOGI questions to be added to the 2030 census form. In releasing the document last week, the Biden White House noted the administration had secured $10 million in the bipartisan government funding bill recently adopted to research in 2023 adding questions about LGBTQI+ Americans to the Census Bureau's American Community Survey, which is a vital statistical tool used by countless researchers and policymakers, in order to "illuminate disparities LGBTQI+ people continue to face."
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