The agency has already removed scientific data from public view. More could follow. By Katherine J. Wu (Thanks to Ed M.)
The CDC campus in Atlanta (Smith Collection / Gado / Getty)
Last night, scientists began to hear cryptic and foreboding warnings from colleagues: Go to the CDC website, and download your data now. They were all telling one another the same thing: Data on the website were about to disappear, or be altered, to comply with the Trump administration’s ongoing attempt to scrub federal agencies of any mention of gender, DEI, and accessibility. “I was up until 2 a.m.,” Angela Rasmussen, a virologist at the Vaccine and Infectious Disease Organization at the University of Saskatchewan who relies on the CDC’s data to track viral outbreaks, told me. She archived whatever she could.
What they feared quickly came to pass. Already, content from the CDC’s Youth Risk Behavior Surveillance System, which includes data from a national survey, has disappeared; so have parts of the Agency for Toxic Substances and Disease Registry’s Social Vulnerability Index and the Environmental Justice Index. The CDC’s landing page for HIV data has also vanished. And the agency’s AtlasPlus tool, which contains nearly 20 years of CDC surveillance data on HIV, hepatitis, sexually transmitted infections, and tuberculosis, is down. Several scientists I talked with told me they had heard directly from contacts at the CDC that the agency has directed employees to scrub any mention of “gender” from its site and the data that it shares there, replacing it with “sex.”
The full scope of the purge isn’t yet clear. One document obtained by The Atlantic indicated that the government was, as of yesterday evening, intending to target and replace, at a minimum, several “suggested keywords”—including “pregnant people, transgender, binary, non-binary, gender, assigned at birth, binary [sic], non-binary [sic], cisgender, queer, gender identity, gender minority, anything with pronouns”—in CDC content. While these terms are often politicized, some represent demographic variables that researchers collect when tracking the ebb and flow of diseases and health conditions across populations. Should they be reworded, or even removed entirely, from data sets to comply with the executive order, researchers and health-care providers might have a much harder time figuring out how diseases affect specific communities—making it more challenging to serve Americans on the whole.
CDC data’s “explicit purpose” is to guide researchers toward the places and people who most need attention, Patrick Sullivan, an epidemiologist at Emory University and a former CDC Epidemic Intelligence Service officer, told me. As the changes unfold before him, he said, “it’s hard to understand how this benefits health.”
When I contacted the CDC, a spokesperson redirected my requests for comment to the Department of Health and Human Services. After this story was published, an HHS spokesperson said that “all changes to the HHS website and HHS division websites are in accordance with President Trump’s January 20 Executive Orders” on gender and DEI.
The government appears to understand that these changes could have scientific implications: The document directing a review of CDC content suggests that some work could be altered without “changing the meaning or scientific integrity of the content,” and that any such changes should be considered “routine.” Changing other content, according to the document, would require review by an expert precisely because any alterations would risk scientific integrity. But the document does not specify how data would be sorted into those categories, or at whose discretion.