Top cancer statistics agencies in the United States will soon have to strictly classify patients' gender as male, female or unknown. Scientists and advocates say the change will harm the health of transgender people, one of the most marginalized populations in the country.
Scientists and transgender rights advocates say the changes will make it much more difficult to understand cancer diagnoses and trends among transgender people. Some studies have found that transgender people are more likely to use tobacco products or are less likely to undergo routine cancer screenings—factors that may put them at higher risk of the disease.
Cancer researchers say the change is a consequence of the Trump administration's policy of recognizing only “male” and “female” genders.
Scientists said the change would affect all cancer registries in each state and territory as they receive federal funding. Beginning in 2026, the registries are funded by the Centers for Disease Control and Prevention and the National Cancer Institute. will classify cancer patients as male, female or unspecified/unknown. And federal health agencies will only receive data on cancer patients classified this way.
Registers currently indicate whether the cancer patient's gender is “male”, “female”, “other”, various variations of “transgender”, or that the patient's gender is unspecified or unknown.
President Donald Trump issued an executive order in January decree declaring that the government would only recognize male and female genders. Cancer registry officials said the federal government has directed them to review how they collect data on cancer patients.
“In the U.S., if you get federal money, we essentially had no choice,” Eric Durbin, director of the Kentucky Cancer Registry and president of the North American Association of Central Cancer Registries, told KFF Health News. The NAACCR, which receives federal funds, maintains cancer reporting standards in the United States and Canada.
Officials will have to classify patients' sex as unknown if “the patient's sex is documented as other than male or female (eg, non-binary, transgender) and there is no additional information about sex assigned at birth,” the new standard states.
Missing the big picture
The researchers said they do not have high-quality population-level data on cancer rates in transgender people, but they have made progress in improving them – work that is now in jeopardy.
“When it comes to cancer and cancer disparities, you can use cancer registries to see where the air pollution is the most because lung cancer rates are higher in those areas. You can see the impact of nuclear waste storage because of the types of cancer that are higher in those zip codes, in those areas of the country,” said Shannon Kozlovich, who serves on the executive committee of the California Cancer Dialogue.
“The more parts of our population we exclude from this data set, the more we won’t know what’s going on,” she said. “And that doesn’t mean it’s not happening.”
For decades, cancer registries have been the most comprehensive surveillance tool in the United States to understand cancer incidence and survival rates and identify alarming disease trends. Each year, hospitals, pathology laboratories, and other health care providers report cancer cases to regional and national cancer registries. The data collected documents cancer and mortality rates among regions, races, genders and age groups.
Two federal programs serve as the top authorities on cancer statistics, with information on tens of millions of cases. The CDC's National Cancer Registries Program provides funding to organizations in 46 states, the District of Columbia, Puerto Rico, the U.S. Virgin Islands, and the U.S. Pacific Island territories. His data is 97% of the US population. The National Cancer Institute's Surveillance, Epidemiology, and End Results Program, known as SEER, collects and publishes data from registries covering almost half US population.
Information published by cancer registries has led to changes in treatment and prevention, as well as other measures aimed at reducing diagnosis and mortality rates.
For example, data collected by cancer registries has been important in identifying rising incidence of colorectal cancer among people under 50. As a result of the US recommendation now I recommend that adults begin screening at 45 rather than 50.
States have taken their own measures. Lara Anton, a spokeswoman for the Texas Department of State Health Services, said epidemiologists with the Texas Cancer Registry found in 2018 that the state has the highest incidence rate of hepatocellular carcinoma, a liver cancer that occurs more often in men than women, in the country. Texas Institute for Cancer Prevention and Research initiated national efforts The project aims to reverse the rise in liver cancer. The Texas Cancer Registry joined SEER in 2021.
“Once a cancer patient is on the cancer registry, we follow them for the rest of their lives. Because what we really want to know is, do patients survive different types of cancer and different stages of cancer?” Durbin said. “This is incredibly important for public policy.”
The North American Association of Central Cancer Registries maintains national standards defining what data registries collect for each diagnosis. The list is being developed in collaboration with the CDC, the National Cancer Institute and other organizations.
For any given patient, registries collect more than 700 pieces of information, including demographics, diagnosis, treatment and life expectancy, according to NAACCR standards, Durbin said. Registries funded by the CDC and NCI are required to report the sex of each patient.
The NAACCR definitions and accompanying data standards are designed to ensure that registries consistently collect case data. “Basically, everyone is following the standards” developed by the NAACCR, Durbin said. While registries can collect state-specific information, the researchers said they need to follow those standards when submitting cancer data to the federal government.
In an emailed statement, Department of Health and Human Services spokesman Andrew Nixon said, “HHS uses biological science to guide policy rather than the ideological agendas that the Biden administration has implemented.”
“Reverse” progress
The NAACCR regularly publishes updated recommendations. But moving to a gender category to exclude transgender people in 2026 was an emergency move because of Trump administration policies, Kozlovich said. She was on a group that pushed for changes to cancer data collection so that sex and gender identity were counted as separate data points.
According to CDC data analysis According to the Williams Institute at UCLA School of Law, 2.8 million people age 13 and older identify as transgender.
Scientists and transgender rights advocates said in interviews that there are warning signs that transgender people may be more likely to get cancer or experience worse health outcomes than others.
“Without evidence of our health disparities, you remove any incentive to fix them,” said Scout, executive director of the LGBTQIA+ Cancer Network.
A study published in 2022 found that transgender and gender diverse populations two or three times cisgender people are just as likely as cisgender people to report heavy use of cigarettes, e-cigarettes, or cigars. Tobacco use is a leading cause of cancer and cancer mortality.
A Canadian study A 2019 study concluded that transgender patients were less likely to receive recommended screenings for breast, cervical and colorectal cancer. AND 2023 study Researchers at Stanford University School of Medicine found that LGBTQ+ patients were nearly three times more likely to have breast cancer recurrence than cisgender heterosexual people.
Scarlett Lyn Gomez, an epidemiologist at the University of California, San Francisco and director of the Greater Bay Area Cancer Registry, said that for at least 10 years the NCI has been interested in improving its ability to monitor the burden of cancer among patient populations with different sexual orientations and gender identities. Cancer registries are a logical place to start, she says, because that's what they're designed to do.
According to Gomez, there is “slow but good progress.” “But now we personally, I think, have gone completely backwards.”
The decision not to record transgender identity in cancer patients is just one of the changes registries have faced under the Trump administration, according to scientists leading surveillance efforts and government health agencies. HHS's mandate to cut contract costs has led to cuts in funding for cancer registries in NCI's SEER program. The scientists said CDC funds for registries were not cut; however, the White House's proposed FY 2026 budget seeks to eliminate funding for the National Cancer Registry Program.
Other anti-trans actions by the Trump administration include canceling research grants for LGBTQ+ health research, eliminating the National Institutes of Health Office of Sexual and Gender Minority Health, and stopping specialized services for LGBTQ+ youth through the National Suicide Prevention Hotline 988.
Without data, researchers won't be able to fund research that could help trans patients, Gomez says. “It’s erasure.”
