Disappearing Data: Monitoring Federal SOGI Data Losses and Advancing Accountability

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Join ICPSR, the Movement Advancement Project, and the Williams Institute for a special Love Data Week panel examining the disappearance of sexual orientation and gender identity (SOGI) data from federal surveys and administrative systems—and what these losses mean for people, policy, and decision-making. Panelists will situate recent changes within broader federal data policy, review progress made prior to 2025, and discuss how new executive actions are reshaping the collection, governance, and use of SOGI data across government.

The discussion will highlight concrete examples of removed or altered data elements, outline efforts to monitor and document these changes, and explore accountability pathways, including litigation and public comment. Participants will also learn how to engage with ongoing initiatives to help track and protect essential public data moving forward.

The slides from the presentation are available at https://myumi.ch/qZemM

Image description:

  • Infographic on slide 6: “The ACS invites about 1 in 38 US households per year to participate either online or in paper form. The Census Beureau publishes the stats as reports, tables and other products on it’s websites. Government agencies use the stats to drive decisions about the distribution of trillions of dollars distributed each year.”
  • Image on slide 7: “Executive Order 14168 titled ‘Defending Women from Gender Ideology Extremism and Restoring Biological Truth to the Federal Government'”

Links shared during presentation:

  • Reports & Federal Guidelines
    • National Academies Report: https://www.nationalacademies.org/publications/26424
    • Federal Evidence Agenda (LGBTQI+): https://bidenwhitehouse.archives.gov/wp-content/uploads/2023/01/Federal-Evidence-Agenda-on-LGBTQI-Equity.pdf
    • OMB SOGI Best Practices: https://bidenwhitehouse.archives.gov/wp-content/uploads/2023/01/SOGI-Best-Practices.pdf
    • HUD SOGI Action Plan: https://www.huduser.gov/archives/portal/pdf/SOGI-DATA-ACTION-PLAN.pdf
    • American Community Survey SOGI Testing: https://www2.census.gov/about/partners/cac/nac/meetings/2024-11/presentation-testing-implementing-sogi.pdf
  • Policy Changes & Legal Documents
    • Executive Order (Jan 2025): https://www.whitehouse.gov/presidential-actions/2025/01/defending-women-from-gender-ideology-extremism-and-restoring-biological-truth-to-the-federal-government/
    • OMB Memo (Pause): https://dcg.usc.edu/wp-content/uploads/2025/01/OMB-Memo-Pause.pdf
    • Litigation (Democracy Forward): https://democracyforward.org/news/press-releases/sogi-data-foia/
    • Public Comments (OMB Report): https://omb.report/icr/202504-1121-001/doc/156323001
  • Data Monitoring & Rescue Efforts
    • Data Index (Main): https://dataindex.us/
    • SOGISC Removal Article: https://dataindex.us/newsletter/article/4a21cae3-cfcb-4e53-b174-097c9dda5dec
    • Data Rescue Project: https://www.datarescueproject.org/data-rescue-tracker/
    • DataLumos (ICPSR Archive): https://www.icpsr.umich.edu/sites/datalumos/home
    • America’s Essential Data (with use cases): https://essentialdata.us/
  • Research & News Coverage
    • Williams Institute (UCLA): https://williamsinstitute.law.ucla.edu/
    • Movement Advancement Project (MAP): https://www.lgbtmap.org/
    • LGBTQI+ Archive: https://www.thelgbtqarchive.org/
    • NPR (Census Data Coverage): https://www.npr.org/2025/02/12/nx-s1-5289329/us-census-bureau-survey-data
    • STAT News (CDC Data Coverage): https://www.statnews.com/2025/02/25/cdc-will-no-longer-process-transgender-data/
    • NPR (Methodological Issues): https://www.npr.org/2025/02/21/nx-s1-5305265/census-lgbtq-sogi-data-robert-santos
  • Official Repositories & Agencies
    • ICPSR: https://www.icpsr.umich.edu/sites/icpsr
    • CDC BRFSS: https://www.cdc.gov/brfss/index.html
    • RegInfo: https://www.reginfo.gov/public/jsp/Utilities/aboutUs.myjsp
    • Federal Register: https://www.federalregister.gov/
    • Internet Archive: https://web.archive.org/
  • Other resources
    • https://mdi.georgetown.edu/quick-improvements-to-data-privacy/
    • https://fas.org/publication/data-gov-guide/
    • https://aisp.upenn.edu/wp-content/uploads/2025/10/AISP_IntroductiontoDataSharing_2025.pdf
    • https://essentialdata.us/in-memoriam.html
    • https://essentialdata.us/use-cases.html
  • Link to spreadsheet where we are tracking SOGI measure removals from federal data collections: http://bit.ly/44hldg5

This webinar is part of the 2026 ICPSR Data Fair @ Love Data Week. For more information, please visit myumi.ch/ICPSRLoveDataWeek.