U.S. Cancer Data Collection to Exclude Transgender Identities, Raising Health Equity Concerns
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A sweeping change to how U.S. cancer statistics are collected will soon require registries to classify patient sex as strictly male, female, or unknown, a move that scientists and advocates warn will substantially hinder understanding of cancer trends within the transgender population and possibly harm their health outcomes.
The alteration,slated to take effect in 2026,stems from Trump administration policies defining sex as solely male or female. This shift will impact cancer registries across every state and territory, as they rely on federal funding from the Centers for Disease Control and Prevention (CDC) and the National Cancer Institute (NCI). Currently, these registries allow for more nuanced reporting, including options for “other,” “transsexual,” or “unknown” sex.
“In the U.S., if you’re receiving federal money, then we, essentially, we weren’t given any choice,” explained Eric Durbin, director of the Kentucky Cancer Registry and president of the North American Association of Central Cancer Registries (NAACCR). NAACCR, which receives federal funds, establishes cancer reporting standards for the U.S.
For decades, cancer registries have served as the cornerstone of U.S.cancer surveillance, providing thorough data on incidence, survival rates, and disease trends. The CDC’s National Program of Cancer Registries, covering 97% of the U.S. population, and the NCI’s Surveillance, Epidemiology, and End Results (SEER) program, representing nearly half the population, are the primary authorities in this field.This data has historically informed changes in treatment guidelines and preventative measures, such as the recent recommendation to begin colorectal cancer screenings at age 45, rather than 50.
A Broader pattern of Policy Changes
The shift in data collection is not an isolated incident. It is part of a broader pattern of policies enacted during the Trump administration that targeted the transgender community. These actions included canceling research grants focused on LGBTQ+ health, dismantling the National Institutes of Health’s office for sexual and gender minority health, and eliminating specialized services for LGBTQ+ youth on the 988 national suicide prevention hotline.
The decision to limit sex categorization in cancer registries has also led to funding cuts for cancer registries within the NCI’s SEER program due to a mandate to reduce spending on contracts. While CDC funding for registries has remained stable, the White House’s proposed fiscal 2026 budget aims to eliminate funding for the National Program of Cancer Registries altogether.
The Impact on Research and Public Health
The lack of granular data will impede efforts to understand the unique cancer burdens faced by transgender individuals and advocate for targeted interventions. According to an analysis by the Williams Institute at the UCLA School of Law, approximately 2.8 million people age 13 and older identify as transgender.
“Without evidence of our health disparities, you take away any impetus to fix them,” said Scout, executive director of the LGBTQIA+ cancer Network. Researchers note that while progress had been made in improving data collection on cancer incidence in transgender populations, this work is now at risk of being undone.
Recent studies highlight potential vulnerabilities within the transgender community. A 2022 study found that transgender and gender-diverse individuals were two to three times more likely to use tobacco products, while a 2019 Canadian study indicated they were less likely to receive recommended cancer screenings. Furthermore,a 2023 study from Stanford Medicine revealed that LGBTQ+ patients experienced breast cancer recurrence at nearly three times the rate of their cisgender heterosexual counterparts.
“There’s been slow but good progress,” lamented Scarlett Lin Gomez, an epidemiologist at the university of California-San Francisco and director of the Greater Bay Area Cancer Registry. “But now we’ve completely, personally, I think, regressed backwards.”
The Department of Health and Human Services defended the policy change, stating in an emailed statement that “HHS is using biological science to guide policy, not ideological agendas that the Biden administration perpetrated.” Though, critics argue that the policy is based on a narrow and outdated understanding of sex and gender, and will ultimately harm the health of a vulnerable population. The erasure of this data, researchers warn, is a significant step backward in the fight against cancer and the pursuit of health equity.
