Researchers are eager to save data for U.S. government data on trans youth, and then it disappears
If you think this sounds familiar, you are not wrong. When Trump took office in 2017, scientists, archivists and librarians at the University of Pennsylvania competed to save data released by the Environmental Protection Agency (EPA) and NOAA. Another Michigan organization is also concerned that EPA and NOAA websites will lose valuable information, a similar move. The website is backed up to the Internet archive; large data sets are “bagged” for safe storage.
At the time, researchers were not sure if the incoming government would seek to remove any information. It was more of an intuition, which proved the instinct when it was led by Scott Pruitt, a Trump appointee and agency administrator, that EPA began removing climate change information from its website in April 2017 to reflect the new leadership approach. ”
According to data compiled by EDGI, between 2017 and 2021, more than 1,400 pages related to climate change on government websites have changed or are easily accessible. Gretchen Gehrke, who leads the Edgi website monitoring program, notes that this is not a “full list of changes” because some changes (such as removing “climate change” from the EPA.GOV’s navigation page) can only be calculated once, but affects several other pages.
“I think after the first Trump administration, there is more awareness of the instability of federal information,” Gailke said. “Watching the Trump campaign really obsessed with trans people and knowing the Trump administration’s information suppression history, people have been and correctly worried that information is at risk.”
That’s why Beccia is paying attention. Datasets like YRB are rare and far from each other, and the lost datasets can be disastrous for those who want to understand the health and well-being of transgender youth in the United States.
Although YRB currently resides on the CDC’s website, it does disappear, as well as data on the Food and Drug Administration and the Department of Health and Human Services websites, it was scrubbed to comply with Trump’s executive order earlier this year under orders from the Office of Personnel Management.
The information returned in mid-February, when U.S. District Judge John Bates, responded to a lawsuit by U.S. doctors, granted a temporary restraining order, and the site was restored. The disclaimer at the top of the YRBS page now says: “Any information that promotes gender ideology is extremely inaccurate,” adding: “This page does not reflect biological reality, so the government and the department rejected it.”
Tazlina Mannix works at the YRBS program in Alaska from 2015 to 2023, both as a survey coordinator and data manager. She noted that even if the CDC keeps data online, disclaimers like those on the website now make it harder for researchers to get the job done. Collecting public health data depends on relationships with people in the health department and school districts. She said giving those people any reason to hesitate can “get you back to zero.” “When I saw it for the first time [that disclaimer]I’m very scared. The language is so extreme and wrong. ”
