As Trump hits delete, the race is on to save LGBTQ and climate data

The race is on to try to stop vital information from being rewritten or scrubbed from U.S. government websites, with researchers warning that the loss of key data could create risks for the environment and marginalized communities.

Thousands of U.S. government web pages are being altered or deleted following a slew of executive orders from President Donald Trump targeting what his administration calls “gender ideology extremism” and environmental policies.

“In order to make rational, effective public health policy, you need to have accurate, comprehensive public health data to work with. Remove that and it is a recipe for disaster,” said Charles Gaba, a health care data analyst working to back up information from Centers for Disease Control and Prevention websites.

Datasets from the CDC, including the social vulnerability index and environmental justice index used to quantify disproportionate health risks among demographics, were taken offline by health agency officials late last month.

“They’re systematically going through all federal documents … and taking out the words they find offensive,” Georges Benjamin, head of the American Public Health Association, told the Thomson Reuters Foundation.

“The average person should think about this as censorship.”

Officials at the CDC and other federal health agencies have also purged statistics on HIV among transgender people and data on health disparities among young gay, lesbian, bisexual and transgender people.

Eliminating information could make tracking infectious diseases, including HIV and mpox, more difficult and severely affecting everyone, Benjamin said.

Organizations including Doctors for America, American Federation of Teachers and Minority Veterans of America have filed lawsuits against the U.S. government to block the moves.

“The removal of this information deprives researchers of access to information that is necessary for treating patients … and for developing practices and policies that protect the health of vulnerable populations and the country as a whole,” the Doctors for America lawsuit said.

Preserving data

After Trump’s inauguration, the Office of Personnel Management, the U.S. government’s human resources agency, told all departments and agencies to end programs that promote or reflect gender ideology and “recognize women are biologically female, and men are biologically male”.

Academics and online preservation groups, which maintain a record of the U.S. government as it changes over time for historical and research purposes, have intensified their efforts to back up information.

Gaba created an index of CDC websites using the Internet Archive, a non-profit digital library website that allows anyone to back up a website by sending it a URL.

The Internet Archive had already been saved some government websites using automatic web crawling software, Gaba told the Thomson Reuters Foundation.

The process has other weaknesses. Navigating the archived library can sometimes lead to dead ends or broken websites, if a site is not completely backed up, malware is detected, or the host server is taken down.

While 7,200 static pages, PDFs, spreadsheets, and more were backed up on ACASignups, a website managed by Gaba that tracks Affordable Care Act data and health issues, the process did not save the main public health databases, which have to be downloaded separately.

After Trump’s inauguration, the Public Environmental Data Project, a volunteer coalition that preserves public access to federal environmental data, archived the Council on Environmental Quality’s Climate and Economic Justice Screening Tool (CEJST).

Federal agencies used CEJST to identify communities with significant environmental, social and economic burdens that need targeted investment from environmental initiatives.

The Public Environmental Data Project is now replicating the Environmental Protection Agency’s ‘EJScreen’ tool, which combines environmental and demographic indicators to assess communities at higher risk. The U.S. government took it offline between Feb 3 and Feb 5.

Archive challenges

Archiving government information is not new. Groups such as the End of Term Web Archive, which includes the Internet Archive and libraries and research organizations, have been saving government websites over the past five presidential terms.

However, the new Trump administration’s rapid policy changes have added urgency to the task.

The new administration is working much faster than during Trump’s first term, said Katie Hoeberling, director of policy initiatives at the Open Environmental Data Project, which promotes accessible environmental data to support community-driven governance and information sharing.

Taxpayer dollars, she said, had paid for CEJST and EJScreen, “so the public deserves access to it — whether that be for research, advocacy or litigation purposes, or to just help people understand their environments better.”

More data might be recovered through legal means, like the Doctors for America lawsuit against the CDC, Food and Drug Administration (FDA), and their parent agency the Department of Health and Human Services (HHS).

The lawsuit argues the removal of data on youth behavioral health risks, HIV support and FDA guidance on diversity in clinical trials would hinder vital research.

The CDC declined to comment on the lawsuit. The FDA and HHS did not respond to a request for comment on the lawsuit.

Even if existing data can be preserved, researchers are concerned that new data will not be collected and that could have an effect on the accuracy of future research and policies.

Existing information collected for one purpose cannot necessarily be used for another, Benjamin said, adding that missing slight differences could snowball into huge effects in areas such as disease prevention.

“Yesterday’s data is yesterday’s data. It’s the baseline,” Benjamin said.