The Future of LGBTQ + Data Collection: Current Threats, Privacy Safeguards, and Long-term Strategy

Session Submission Type: Late-Breaking Roundtable

Abstract

In 2025, President Trump signed a series of executive orders to roll back LGBTQI+ inclusive data collection across federal agencies (Executive Order 14168), restrict access to medically necessary health care for transgender people (Executive Order 14187), and reframe federal data priorities under the banner of combating “gender ideology” and “fraud, waste, and abuse” (Executive Order 14243). These directives affect both existing and future datasets and signal an unprecedented shift toward reducing—or outright eliminating—sexual orientation and gender identity (SOGI) measures from key statistical, administrative, and programmatic systems. 

Since the APPAM submission deadline in April, new and escalating implementation actions have emerged that heighten risks to data integrity, privacy, and the ethical use of data on LGBTQI+ populations. This includes the continued systematic removal of SOGI measures from federal data collection instruments, growing threats to federal–state data linkages, the repurposing of data for enforcement, and the erosion of privacy safeguards protecting underserved and underrepresented communities. The long-term outcomes remain uncertain as court challenges to these actions are still pending. 

This late-breaking roundtable will convene experts in LGBTQI+ data collection, healthcare, civil rights law, data privacy and data governance to explore: 

• The current federal landscape with respect to executive orders impacting data collection on LGBTQI+ populations, including which datasets, agencies, and measures are most at risk, as well as recent developments in court challenges to these executive actions.  


• Emerging threats to federal–state data linkages, including how information shared for healthcare and public health program administration can be repurposed for enforcement. 


• Recent examples such as law enforcement agencies using state-level data to investigate providers serving transgender patients, and the Centers for Medicare & Medicaid Services sharing immigration data from state Medicaid programs—with serious implications for the safety and confidentiality of Medicaid data on transgender people. 


• The use of data as an enforcement tool within the administration’s broader anti-LGBTQI+ agenda, and parallels with other contexts where data has been leveraged to criminalize health care or target marginalized populations. 


• State strategies to mitigate data misuse, navigate a hostile federal environment, and promote ethical, responsible data collection on LGBTQI+ communities. 


• Best practices for the collection, governance, and protection of LGBTQI+ data that uphold equity goals while safeguarding against potential misuse. 

The session will dissect the rapidly evolving federal policy environment and highlight opportunities for proactive action by policymakers, researchers, and advocates. Audience members will be engaged in discussing actionable strategies to ensure that data—an essential tool for identifying disparities, guiding policy, and measuring progress—remains a resource for advancing equity rather than enabling harm.

Policy Area

• Social Equity and Race

Moderator

• Caroline Medina, Movement Advancement Project

Organizer

• Caroline Medina, Movement Advancement Project

Speakers

• Claire McKay Bowen, Urban Institute

• Samuel Fennell, Washington State LGBTQ Commission

• Adelia Jenkins, University of Pennsylvania

• Elana C Redfield, University of California - Los Angeles