Federal Rule Limits Cancer Registries to ‘Male,’ ‘Female’ or ‘Unknown’ — Experts Warn It Will Erase Trans Patients from Data

Federal guidance tied to Trump-era policies will require cancer registries that receive funding from the Centers for Disease Control and Prevention (CDC) and the National Cancer Institute (NCI) to record patient sex only as male, female or not stated/unknown, beginning in 2026. Researchers and transgender advocates say the change will remove visibility of transgender and gender-diverse people from national cancer datasets and undermine efforts to detect disparities in diagnosis, screening and survival.

Currently, many state and territorial cancer registries collect a broader range of entries for sex and gender, including options such as “other,” several “transsexual” categories or separate fields for gender identity. The revised standard instructs registries to mark sex as unknown when a patient’s recorded sex is something other than male or female (for example, non-binary or transsexual) and there is no information about sex assigned at birth.

Because most registries rely on federal funding, the change will affect reporting across the United States. The CDC’s National Program of Cancer Registries funds organizations in 46 states, the District of Columbia, Puerto Rico, the U.S. Virgin Islands and Pacific Island territories and covers roughly 97% of the U.S. population. The NCI’s Surveillance, Epidemiology, and End Results (SEER) program collects and publishes data from registries that represent nearly half of the U.S. population.

Why researchers are alarmed

Scientists say high-quality, population-level cancer data for transgender people is already limited, and that recent progress toward better surveillance may be reversed by the new requirement. Cancer registries are a primary public-health tool for tracking incidence, survival and geographic or demographic patterns that can point to risk factors and inform prevention and policy.

“The more parts of our population that we are excluding from this dataset means that we are not going to know what’s happening,” said Shannon Kozlovich, a member of the executive committee of the California Dialogue on Cancer. “And that doesn’t mean that it’s not happening.”

Eric Durbin, director of the Kentucky Cancer Registry and president of the North American Association of Central Cancer Registries (NAACCR), said registries follow uniform standards developed with the CDC and NCI. NAACCR’s data dictionary includes hundreds of data elements for each case; until now many registries have used more granular sex and gender options to capture diversity in patient identity.

Potential public-health consequences

Researchers point to studies suggesting transgender and gender-diverse people may face higher exposure to cancer risk factors and barriers to care. An analysis by the Williams Institute estimates about 2.8 million people aged 13 and older in the U.S. identify as transgender. A 2022 study found transgender and gender-diverse people were two to three times as likely as cisgender people to report active use of cigarettes, e-cigarettes or cigars. A 2019 Canadian study reported lower rates of recommended breast, cervical and colorectal cancer screening among transgender patients, and a 2023 study at Stanford found LGBTQ+ patients faced higher breast cancer recurrence compared with cisgender heterosexual patients.

Without reliable registry data that captures gender identity, researchers and policymakers say it will be harder to quantify disparities, prioritize research, and target prevention or screening interventions. “Without evidence of our health disparities, you take away any impetus to fix them,” said Scout, executive director of the LGBTQIA+ Cancer Network. “It’s erasure,” said Scarlett Lin Gomez, director of the Greater Bay Area Cancer Registry at the University of California, San Francisco.

Broader context and funding concerns

Registry leaders also note the change comes amid other reported shifts in federal support for sexual and gender minority health research. Officials and registry scientists have cited funding reductions to certain programs and a White House budget proposal that seeks to eliminate funding for the National Program of Cancer Registries. In an emailed statement about the guidance, HHS spokesperson Andrew Nixon said, “HHS is using biological science to guide policy.”

Public-health experts warn the combined effect of narrowed data categories and funding uncertainty could set back efforts to understand cancer burden and outcomes for transgender and gender-diverse people for years, hampering targeted prevention and treatment strategies.

Key takeaway: Beginning in 2026, federally funded cancer registries will report patient sex only as male, female, or not stated/unknown. Researchers and advocates warn this will limit the visibility of transgender and gender-diverse populations in national cancer surveillance and obstruct efforts to identify and address disparities.