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Researchers Urgently Preserve US Government Data on Trans Youth at Risk of Disappearing

In 2017, as Donald Trump took office as President, scientists, archivists, and librarians at the University of Pennsylvania took immediate action to preserve data from the Environmental Protection Agency (EPA) and the National Oceanic and Atmospheric Administration (NOAA). Similarly, a group in Michigan, concerned about the potential loss of valuable information from EPA and NOAA websites, took steps to back up this data. These efforts involved storing websites on the Internet Archive and securing large datasets.

At the time, researchers were uncertain whether the new administration would delete any information, but their concerns proved valid when the EPA, under Scott Pruitt, a Trump appointee, began removing climate change information from its website in April 2017, citing a new leadership approach.

Between 2017 and 2021, over 1,400 pages related to climate change on government websites were altered or became less accessible, according to the Environmental Data & Governance Initiative (EDGI). Gretchen Gehrke, who leads EDGI’s website monitoring program, noted that this figure does not represent a comprehensive list of changes, as some amendments, like removing the “Climate Change” section from EPA.gov’s navigation page, affected multiple pages.

Gehrke expressed that there is growing awareness about the vulnerability of federal information following the first Trump administration’s actions. Concerns have heightened as the Trump campaign has demonstrated increased focus on trans issues, out of fear that such information could be at risk of suppression.

Beccia has voiced worry about datasets such as those in the Youth Risk Behavior Survey (YRBS), which are rare and essential for understanding the health and well-being of trans youth in America. Although the YRBS is currently accessible on the CDC’s website, there was a recent incident where it was temporarily removed, along with information from the Food and Drug Administration and the Department of Health and Human Services websites, due to an Office of Personnel Management order to comply with Trump’s executive orders.

The datasets were restored in mid-February following a temporary restraining order by US District Judge John Bates, prompted by a lawsuit from Doctors for America. However, a disclaimer on the YRBS page now states, “any information on this page promoting gender ideology is extremely inaccurate,” adding that the page “does not reflect biological reality and therefore the administration and this department rejects it.”

Tazlina Mannix, who worked with the YRBS program in Alaska from 2015 to 2023, highlighted that even if the CDC keeps the data online, disclaimers like the current one complicate research work. She explained that collecting public health data depends on trust with individuals in health departments and school districts, and any hesitation can undermine these efforts. Upon seeing the disclaimer, Mannix expressed alarm, describing the language as extremely incorrect and unnecessarily severe.

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