The Dangers of DOGE Disappearing Our Nation’s Data

When I worked as a research assistant in a Harvard neuroscience laboratory, the saying “Anecdotes are not data” was pounded into my brain. (I should have had it embroidered on a throw pillow.) 

Our experiences—and the stories we tell ourselves to make sense of the world—are powerful. It’s all too easy to project them onto broad questions we might have about the nature of disease and human behavior. But those anecdotes are limited in what they can tell us. They are, far too often, biased by emotion and context. That’s the beauty of the scientific method. It allows us to examine questions with a more objective lens. To put aside our personal stories and seek answers in a more controlled and systematic way. To get down to the data.

Just two weeks after Donald J. Trump was sworn in as the 47th President of the United States, his administration started purging vital public data from websites of agencies like the Centers for Disease Control and Prevention (CDC), the National Institutes of Health (NIH), the Census Bureau, the Environmental Protection Agency (EPA), and more. It included evidence-based information ranging from climate change to gun violence. Any page that potentially touched on transgender issues; diversity, equity, and inclusion (DEI), or environmental justice was also summarily removed. The administration even removed vital longitudinal data sets like the CDC’s Behavioral Risk Factor Surveillance System (BRFSS), Youth Risk Behavior Surveillance System (YRBSS), and the Census’s American Community Survey Sexual Orientation and Gender Identity (SOGI) results. 

The science and journalism communities quickly sounded the alarm. Scientific researchers voiced concerns about being locked out of critical data sets. Clinicians worried about sending patients to evidence-based data about different medical conditions. Journalists decried the lack of resources to support fact-based reporting. And patient advocates and policy makers worried about having the right data on hand to drive evidence-based initiatives and decision-making.

While some agency heads tried to play off the data purges as business as usual, David Shiffman, Ph.D., an ocean conservation scientist in Washington, D.C., said the removal of this information was “unprecedented.”

“This is all data that we paid for as taxpayers. It is supposed to be a public resource. These pages and data sets are used by scientists, journalists, citizens, advocacy groups, and others to make sure we are all on the same page,” he explained. “Getting rid of it is something that hasn’t been done—and the way that it’s being done now is absolutely stunning in its scope.”

Case in point: In early March, the Department of Defense came under fire for removing historic photos of the Enola Gay, the aircraft that dropped the first atomic bomb on Japan, seemingly for having the word “gay” in the photo. The Pentagon said it had removed all content in compliance with Trump’s executive order on DEI. 

“We shouldn’t be erasing history or data about people who are gay, period,” said Shiffman. “But this is an example of just how clueless and how broadly destructive these actions are.”

Kate Clancy, a biological anthropologist at the University of Illinois who specializes in women’s health, said the DEI-related purges were not wholly unexpected—but the removal of health-related data sets was “shocking.”

“So many scientists rely on this data to do their research,” she said. “Luckily, there are people who are out there downloading these data sets. But we need to be having some conversations about who is going to be responsible for these data going forward—and make sure that the people who need to be accessing it can access it.”

That’s important, because the loss of these data is, in some ways, incalculable. Scientists who have relied on this information may not be able to continue their studies, whether it involves longitudinal health data or expensive satellite images tracking the effects of climate change. Clinicians and newly diagnosed patients lose a trusted source of information about different diseases. Farmers and fishermen lose vital information about storms and weather conditions. The country will be slower to respond to outbreaks of food-borne illness and infectious diseases. And, perhaps worst of all, we lose crucial histories about people and communities who have traditionally been overlooked and underserved, leaving us without a blueprint about how to do better in the future.

While many were shocked by the loss of data, Andrea Waner, Director of Engagement for the Association of Health Care Journalists (AHCJ), said she and her colleagues were already planning to start downloading these critical data as soon as Trump won the 2024 election.

“Having lived through the last Trump administration, and having done health data work before, I know how important this data is,” she said. “AHCJ decided to act as a convener, bringing in different organizations to see what we could do to save and store this data. We wanted to be prepared to do something before it was four p.m. on a Friday and stuff just started disappearing—which is exactly what happened.”

Organizations like AHCJ have downloaded data sets to their own website data archives—and you can find others on the Internet Archive, Data Rescue Project, and Harvard Dataverse. In addition to this kind of data capture, there have also been a series of lawsuits that have resulted in orders to restore some data to government websites, including the YRBSS. When you visit the website now, you are greeted with the following note:

Per a court order, HHS is required to restore this website as of 11:59PM ET, February 11, 2025. Any information on this page promoting gender ideology is extremely inaccurate and disconnected from the immutable biological reality that there are two sexes, male and female. The Trump Administration rejects gender ideology and condemns the harms it causes to children, by promoting their chemical and surgical mutilation, and to women, by depriving them of their dignity, safety, well-being, and opportunities. This page does not reflect biological reality and therefore the Administration and this Department rejects it.

But, as one friend who does research on hormones and the brain told me (and she asked me to quote her directly): “This is absolutely bullshit. And anyone who knows even a little bit about biology knows it.” 

The problem is, too many people don’t. 

Other pages, like the BRFSS, have a different message: CDC’s website is being modified to comply with President Trump’s Executive Orders. And that, my friend added, is scarier. Because it is unclear what content or data might be changed. It will, she argued, erode trust in the information that our government provides about health and many other topics, not only today but long into the future. Waner agreed.

“Luckily, some of the people in our group understood early that data integrity was going to be an issue,” she said. “They are going to compare the data that was there in 2024 to information that is potentially re-uploaded to look for discrepancies. Because we want to be able to trust the data. We want to be able to trust the folks who are responsible for disseminating information about these issues. But history doesn’t necessarily dictate the trust that we need.”

The bad news is this administration is systematically removing public webpages and data sets that offer citizens vital information. Worse, they are continuing to do so across a multitude of agency websites. It seems like, every day, they are erasing more and more of this irreplaceable public data—and, with it, our country’s history. And with mass layoffs occurring at this moment across the CDC, Food and Drug Administration, and other health agencies, it is more than likely that we will see even more taxpayer-funded information and history disappear.

The good news is that there are people working to stop it. But more people should be alarmed—and voicing their outrage and calling for an end to these needless data purges. Reach out to your state and federal representatives because our voices do matter. When the Department of Defense removed pages about baseball great Jackie Robinson’s military service in mid-March, public outcry led to its quick return. If we can get loud about sports, we can and should get louder about public science and health data. 

Because anecdotes are not data. And in removing and changing this information, the Trump Administration is giving itself the power to tell us any story it wants to—and we, as a nation, will be all the lesser for it.