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by SofiiaF
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TLDR: I argue that mass deletion of scientific data due to the recent policy changes and executive orders in the US on government sites is a key concern in health, biosecurity and more.  Action can be cheap, accessible and if done in time, can prevent critical information being lost until systems are restored.

Mass deletions are impactful (leaving medics without data, patients without treatment, scientists without evidence), neglected (not reported or centrally coordinated) and have a tractable solution (creating a temporary coordination of information gaps, and long term systems level change in the open storage of scientific public datasets).

 

Current policies are leading to mass deletion or removal of lots of academic papers. Many efforts are being done to try to archive it but it is slow, disparate, disjointed, and too unweildy to condence public science datasets to lone archives.

Just a few reports:

https://www.nbcnews.com/health/health-news/trump-dei-hiv-cdc-website-removed-lgbtq-rcna190068

https://abcnews.go.com/Health/multiple-health-agency-websites-hiv-contraception-comply-executive/story?id=118335484

https://www.yahoo.com/news/cdc-deletes-hiv-lgbtq-care-222430401.html

 

To give a sense of scope, I have attatched just a small excerpt of pages deleted in the last 2 days from a single person crawl of CDC:

 

-PAPERS AND TOPICS DELETED or UNAVAILABLE: (as of 2/2/25)

 

Broad topics:

 

These pages are unavailable, removed or deleted and in terms of neglectedness:

Some media outlets are discussing it but not in a concrete harm reduction or infrastructure/systems change sense

It is not being very publicly reported in mainstream global outlets

The real world effects are being ignored such as medical professionals being unable to prescribe medications, check drug interactions, stick to HIV and TB treatment regimens, researchers complete papers, track disease outbreaks, or give vaccines (as VIS vaccine information sheets must be given before each dose, and the sheets are all removed).

For now, I am working on trying to create a website or system to report deletions, archive alt sources and communicate outbreak cases decentralised.

But we must start with a humble google folder:

Please try to add any sources that you find missing, or any papers or datasets you had downloaded or available that may be critical in rebuilding functional guidelines for practicing evidence based treatment, prevention and immunisation programs.

 

 

Master

https://docs.google.com/document/d/1Si4-mazN4YUJ1f0bczhNX7ic2dG1Hvps/edit?usp=sharing&ouid=103838672950603574456&rtpof=true&sd=true

Folder

https://drive.google.com/drive/folders/1mRNJ8MMKrG51XIrxD9ApIha6C1UHjNLh?usp=sharing

Report a deletion/removal/missing source: e.g. CDC missing HIV guidance 

https://docs.google.com/document/d/1Vp4ZnpwWh_ZVY11eyfkV8BHKlV44PRlO7yN3AEWBtbw/edit?usp=sharing

Report an alt source/add a source: e.g. here’s the pdf on Tetanus vaccines

https://docs.google.com/document/d/1VSLD2aKgTV70kq5cvGlopeRxVxGBQgEY-D_uDLzseUA/edit?usp=sharing

Report a paper retraction policy/lab and research freeze/funding freeze: e.g. I had to retract my paper as it mentioned gender differences in cardiovascular risk

https://docs.google.com/document/d/12LcwPYWe9X1R0-7oQRzwIybZN6BMzSyx1usBpjvq234/edit?usp=sharing

Report news and info about disease, global and public health, recalls, outbreaks, medicine and more: e.g. recall of this product, or H5 strain found in this state

https://docs.google.com/document/d/1JAGgAWNEPt4zHdSZlo9KiTNsmsc00VlFs4CeWovV2BU/edit?usp=sharing

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johant🔸4
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Late to the party as many of these seem to have been restored (albeit very reluctantly given the grumpy note). But for some still offline, there's the Wayback Machine that have archived snapshots, e.g. https://web.archive.org/web/20250121010747/https://www.cdc.gov/hiv/causes/index.html

Keep up the good work!

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Rebecca5
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Do we know they are being actually deleted, rather than just taken offline?

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SofiiaF4
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There are some anonymous whistle lowers but nothing verified so im going under the assumption whether deleted or removed they are both removing short term access and we need an alternative central point for critical information.

 

I sincerely hope it's just offline but honestly the order was to remove it, but nothing in terms of specifics, and deleting it seems like a logical next step unfortunately in the way it's currently going.

 

I am crossing my fingers the orders are reversed and they are brought back, but without dynamic updates and a central resource point, global health and public data is in jeopardy in my opinion. 

 

They've also closed freedom of information request forms to ask for the data or papers. So can't access it even in case by case requests.

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