The Night the Data Disappeared: A Scientific Community in Crisis
On the evening of January 30, 2025, a wave of urgency swept through the scientific community. Researchers and public health officials began receiving cryptic warnings: download data from the CDC website now. The reason? The Trump administration had reportedly ordered the Centers for Disease Control and Prevention (CDC) to scrub its website of terms related to gender, diversity, equity, and inclusion (DEI), and accessibility. The directive, part of a broader effort to align federal agencies with the administration’s ideological priorities, sent shockwaves through the scientific community. For many, the stakes were personal. Angela Rasmussen, a virologist at the University of Saskatchewan, stayed up until 2 a.m. archiving as much data as she could before it disappeared. By morning, her fears were confirmed: critical datasets had vanished.
The Purge of Public Health Data: What’s at Stake
The CDC’s website, long a gold standard for public health data, began to erode almost immediately. Content from the Youth Risk Behavior Surveillance System, which tracks national health trends among adolescents, was removed. So too were parts of the Agency for Toxic Substances and Disease Registry’s Social Vulnerability Index and Environmental Justice Index. The CDC’s HIV data landing page went dark, and its AtlasPlus tool, a repository of nearly two decades of surveillance data on HIV, hepatitis, sexually transmitted infections (STIs), and tuberculosis, was taken offline. Scientists were told explicitly that any mention of “gender” would be replaced with “sex,” and other terms like “pregnant people,” “transgender,” and “non-binary” were targeted for removal.
The full extent of the purge remains unclear, but its implications are dire. For researchers, these demographic variables are not political abstractions but essential tools for understanding how diseases affect different populations. Without them, scientists will struggle to identify which communities are most at risk, making it harder to allocate resources and tailor interventions. Patrick Sullivan, an epidemiologist at Emory University, summed it up plainly: “It’s hard to understand how this benefits health.”
The Unseen Costs of Politicizing Public Health Data
The CDC’s data is not just a collection of numbers; it is a lifeline for researchers and healthcare providers. By stripping away demographic details, the administration risks erasing entire communities from the public health record. For example, transgender women, who face disproportionately high rates of HIV, could become invisible in the data. Similarly, gay men, who experience higher rates of STIs but lower rates of obesity, would lose their place in the statistical landscape. These changes could hamstring efforts to address health inequities, from adolescent depression to sex-specific cancers.
Scientists like Katie Biello, an epidemiologist at Brown University, fear the immediate consequences. “My fear is that entire datasets would be taken down,” she said, only to reappear with critical variables altered or removed. Such changes could render the data scientifically useless, undermining decades of progress in public health. The government’s directive acknowledges that some changes may require expert review to preserve scientific integrity, but it offers no clarity on how such decisions will be made—or by whom.
A Recent Example: The Mpox Outbreak and the Danger of Data Erasure
The consequences of such data scrubbing are not theoretical. Jennifer Nuzzo, an epidemiologist at Brown University, points to the 2022 mpox outbreak as a case study. Early in the outbreak, officials struggled to identify who was most at risk, leading to widespread confusion and panic. It was only when researchers collected detailed demographic data that they discovered the disease was primarily affecting men who have sex with men. This insight allowed officials to target resources, such as vaccines, to the most vulnerable populations, bringing the epidemic under control. If similar data had been stripped from the record, the response would have been far less effective.
The lesson from mpox is clear: public health depends on accurate, nuanced data. By sanitizing or erasing terms like “gender” and “sexual orientation,” the government risks hobbling its ability to respond to future outbreaks. The result could be a patchwork system where some communities are left behind, their needs unmet because their existence has been rendered invisible in the data.
The Challenges Ahead: Rebuilding and Resistance
For now, scientists are racing against the clock. Some are archivalizing as much of the CDC website as possible, recognizing that the full extent of the purge may take time to unfold. But even if researchers manage to save the data, rebuilding it will be a Herculean task. Public health data is collected with the intention of identifying which populations most need intervention. If the government defines “sex” as binary, for example, transgender and nonbinary individuals could effectively be erased from the record.
The long-term consequences extend far beyond the immediate loss of data. If states become reluctant to share information with the federal government, or if they stop collecting certain data altogether, the result could be a fragmented public health system. Funding for health initiatives could also be jeopardized, as policymakers rely on data to justify resource allocation. “If there’s no data to prove a health issue exists in a particular community,” one researcher told The Atlantic, “it provides a justification to cut funding.”
The scientific community is bracing for what comes next, but many remain hopeful. As Nuzzo noted, much of the CDC’s data is aggregated from state-level sources, meaning researchers could theoretically reconstruct it. Still, the task would be laborious, and many scientists never imagined they would be forced to “squirrel away” publicly available federal data like fugitives.
For now, the fight to preserve public health data continues. At its heart, this is not just a debate over terminology or ideology—it is a battle for the ability to see, understand, and serve all Americans. The CDC’s mission is to protect the public’s health, but without accurate, inclusive data, that mission is at risk of failing. The question now is whether the government will reverse course, or whether the damage will already be done.