Researchers Rush to Save US Government Data on Trans Youth—Before It Disappears

If you think this sounds familiar, you’re not wrong. When Trump assumed the presidency in 2017, scientists, archivists, and librarians at the University of Pennsylvania raced to save data published by the Environmental Protection Agency (EPA) and NOAA. Another group in Michigan, also fearing the EPA and NOAA websites would lose valuable information, made a similar move. Websites were backed up to the Internet Archive; large datasets were “bagged” for safe keeping.

At the time, the researchers weren’t sure the incoming administration would seek to erase any info. It was more like a hunch, one that proved prescient when, then being led by Trump appointee and agency administrator Scott Pruitt, the EPA began removing climate change information from its website in April 2017, “to reflect the approach of new leadership.”

Between 2017 and 2021, more than 1,400 pages related to climate change on government web sites were altered or made less accessible, according to data compiled by the EDGI. That, notes Gretchen Gehrke, who leads EDGI’s website monitoring program, is not “a comprehensive list of changes,” since some alterations—like removing “Climate Change” from the navigation page of EPA.gov—only get counted once but affect several other pages.

“I think there is a lot more awareness about the precarity of federal information after having experienced the first Trump administration,” Gehrke says. “Watching the Trump campaign become truly obsessed with trans people, and knowing the Trump administration’s history of information suppression, people were and are rightly concerned that that information is at risk.”

Which is why Beccia is concerned. Datasets like those in the YRBS are few and far between and losing it could be disastrous to those wanting to know about the health and well-being of trans youth in America.

Although the YRBS is currently live on the CDC’s website, it did briefly disappear, along with data on the Food and Drug Administration and Department of Health and Human Services web sites, earlier this year following an order from the Office of Personnel Management that it be scrubbed to comply with Trump’s executive orders.

The information returned in mid-February when US District Judge John Bates, responding to a lawsuit from Doctors for America, granted a temporary restraining order and the site was reinstated. A disclaimer at the top of the YRBS page now says “any information on this page promoting gender ideology is extremely inaccurate,” adding “this page does not reflect biological reality and therefore the administration and this department rejects it.”

Tazlina Mannix worked for the YRBS program in Alaska from 2015 until 2023, both as survey coordinator and data manager. She notes that even if the CDC keeps the data online, disclaimers like the one on the site now make it harder for researchers to do their work. Collecting public health data relies on relationships with people in health departments and school districts. Giving those people any reason to hesitate can “set you back to zero,” she says. “When I first saw [that disclaimer], I was so horrified. The language is so extreme, and it’s also just wrong.”