Data hoarders are rushing to save vanishing US health records


While some previously inaccessible CDC landing pages came back over the weekend, vast troves of information remain missing. — AP

Computer science professor Niema Moshiri was watching TV last Thursday evening when his phone lit up with frantic messages from a virologist in Canada. The warning was urgent: back up the US Centers for Disease Control and Prevention’s website – immediately.

From his home in San Diego, Moshiri worked past midnight, scraping and saving gigabytes of CDC data he was told could soon be edited, modified, or erased. By morning, his fears were confirmed – key surveys and datasets had vanished.

With other crucial datasets soon to be taken offline, he then turned to preserving snapshots of the Food and Drug Administration’s website and is now working to archive a comparable collection from the Department of Agriculture.

Government agencies’ moves to comply with US President Donald Trump’s executive orders, which affect everything from gender language to scientific publications, have sparked feverish efforts to archive US government data in online repositories like the Internet Archive. Scientists and archivists say they’re determined to preserve a historical record and guard against potential erasure or revision.

"As an academic, my job is to be able to do research on datasets like this,” Moshiri, a computational biologist at the University of California, San Diego, said in an interview. "If it existed, I want to make sure that it stays existing so that people can continue doing research.”

While some previously inaccessible CDC landing pages came back over the weekend, vast troves of information remain missing. Existing digital tools like the Wayback Machine allow users to see older versions of websites – even after they’ve been changed or deleted – preserving a historical record of online content.

But they have shortcomings too. Without knowing exactly what was on a web page before, it’s impossible to tell what, if anything, has been altered.

"Did it actually come back in its exact form? It’s nice to have the snapshot so that even if it returns, we can verify – yep, this is identical to what used to be there,” Moshiri said.

Beyond the immediate risk of data disappearing, he sees archiving as a safeguard for the future.

"There’s going to be an administration that comes after this. So at least all this information is preserved exactly how it was. And then who knows what the next group is going to do,” Moshiri said. "Once the knowledge is preserved, you can always copy it back again in the future, which is kind of that comfort that I like to feel.” – Bloomberg

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