The Centers for Disease Control and Prevention will no longer process transgender identity data in order to comply with President Trump’s executive order, agency representative Melissa Dibble told STAT on Tuesday.
Sexual orientation data is unaffected and “will be processed per usual protocols,” Dibble added.
The decision will likely affect a number of federal health surveillance systems, including the National HIV Behavioral Surveillance Among Transgender Women and the Behavioral Risk Factor Surveillance System. There is a major dearth of data on trans and nonbinary people in the U.S., so these survey systems that include them serve as critical resources for researchers.
The shift already has implications for the Youth Risk Behavior Surveillance System, a singular source of behavioral health data that’s collected from high schoolers every other year. Researchers depend on it to track health behaviors including sexual behavior, substance use, mental health, and more. State and local governments can use the data to develop youth initiatives and policies. It’s the only nationally representative data on trans youth.
The YRBSS surveys are administered in odd years, meaning that students around the country are supposed to be sitting down during a class period sometime before the end of this school year to fill out the questionnaires. Those were finalized by the CDC last year, including one question about transgender identity that has been optional for states since 2019 and part of the more fixed, standard set of questions since 2023. But now, Dibble says that the survey is being “modified” to comply with the orders.
“This is extremely disruptive,” said Tazlina Mannix, a former data manager epidemiologist in Alaska currently working toward a doctorate in public health at Johns Hopkins. “Historically, everyone has had a final survey for months at this point and they’re collecting data with that tool.”
Less than two weeks after President Trump issued an executive order declaring against scientific evidence that there are only two genders, webpages and datasets that might indicate otherwise were removed from government health agency sites. YRBSS data was one of the first disappearances. The data returned after a court order, but it’s unclear how the judge’s decision may apply to the collection of future data.
“You can’t build an evidence base if you can’t identify the population,” said one public health worker who has worked with the YRBSS before, and spoke on the condition of anonymity. “So that is a huge fundamental challenge.”
Dibble did not respond to questions about how exactly the survey would be modified, but it’s likely that the question on the standard YRBSS about transgender identity is being removed. State-level public health workers with knowledge of the YRBSS process told STAT they’d heard the CDC will not support data aggregation on the question if states choose to include them in their separate, local surveys.
Many states that participate in the YRBSS already opted out of including the question about transgender identity in their state-level surveys (which are given to separate samples of youths than the nationally representative survey) but it’s unclear how many more will leave the question out after the orders.
New York will administer a “revised” survey from the CDC this spring, according to Rachel Connors, a representative for the state’s education department. But as of Feb. 20, it had yet to receive that revised version from the CDC.
If the administration of the YRBSS surveys is delayed due to the modifications, it could potentially affect response rates, Mannix said. If states don’t have their survey materials, then they could see lower response rates from schools.
“It also raises some concerns about the integrity of the data,” said Ariel Beccia, a researcher and instructor at Harvard T.H. Chan School of Public Health who relies on YRBSS data. “This was an approved survey and now we don’t know what it’s happening to the approved set of questions, and who is making these decisions, and why. It’s all behind closed doors. So I think that raises a ton of concerns.”
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