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://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:
- HIV and Sexual Health
- https://www.cdc.gov/hiv/testing/index.html
- HIV hub https://www.cdc.gov/hiv/site.html
- Contraceptive guidelines https://www.cdc.gov/contraception/hcp/contraceptive-guidance/
- STI treatment guidelines https://www.cdc.gov/std/treatment-guidelines/adolescents.htm
- Discussing HIV and Sexual Health resources https://www.cdc.gov/healthyyouth/healthservices/infobriefs/birth_control_information.htm
- STIs in adolescents treatments https://www.cdc.gov/std/treatment-guidelines/adolescents.htm
- Up from 17:46 GMT 2/2
- Contraception guidance for healthcare providers https://www.cdc.gov/contraception/hcp/contraceptive-guidance/
- Preventing HPV in women https://www.cdc.gov/hiv/prevention/index.html
- STI statistics https://www.cdc.gov/sti-statistic
- Gender and diversity
- Disability inclusion
- Youth and childhood
- Diseases and outbreaks, global health
- Health disparities in TB, HIV, STDS and hepatitis https://www.cdc.gov/health-disparities-hiv-std-tb-hepatitis/
- Vaccines
- Vaccine guidance https://www.cdc.gov/vaccines/hcp/acip-recs/index.html
- Misc
- A-Z Index of Birth Defects https://www.cdc.gov/ncbddd/sitemap.html
- Intellectual Disabilities Information Hub https://www.cdc.gov/ncbddd/developmentaldisabilities/facts-about-intellectual-disability.html
- Contact CDC https://www.cdc.gov/contact/wcms-auto-sitemap.xml
- Cancer screening hub https://www.cdc.gov/wcms-auto-sitemap-root-cancerscreening.xm
- Covid treatment sitemap
- Covid vaccine information https://www.cdc.gov/covidvaccines
- Archived content I could find https://archive.cdc.gov/#/results?q=covid%20vaccine&start=0&rows=10
- VetoViolance site https://vetoviolence.cdc.gov/apps/maintenance/
- INCLUSIVE PRACTICES FOR HELPING STUDENTS THRIVE
- YOUTH RISK BEHAVIOUR SURVEILLANCE SYSTEM
- PREVENTING CHRONIC DISEASE | SEXUAL RISK FACTORS
- SEXUAL HEALTH RISK ADVISORY CONCERNS
- Also down was AtlasPlus, an interactive tool that lets users analyze CDC data on HIV, STDs, TB and viral hepatitis, and the CDC’s Social Vulnerability Index, data that helps researchers and public policy leaders identify communities that are vulnerable to the effects of disasters and public health emergencies.
- A page about food safety during pregnancy called “Safer Food Choices for Pregnant People” was also removed.
- CDC with surveillance data on HIV, viral hepatitis, STDs and TB. Also gone missing: a page with basic information about HIV testing. The CDC's Social Vulnerability Index, a tool that assesses community resilience in the event of natural disaster was also taken down.
- For the first time in 60 years, MMWR weekly morbidity and mortality report isn’t published
- Vaccine info sheets
- As of Friday afternoon, several CDC pages related to HIV were down, including the CDC’s HIV index page, testing page, datasets, national surveillance reports and causes pages.
- Many of the CDC’s sites related to LGBTQ youth were also removed, including pages that mentioned LGBT children’s risk of suicide, those focused on creating safe schools for LGBTQ youth and a page focused on health disparities among LGBTQ youth.
- The site for the Youth Risk Behavior Surveillance System — a long-running survey that tracks health behaviors among high school students in the United States — said “The page you’re looking for was not found.”
- Several webpages from Centers for Disease Control and Prevention with references to LGBTQ+ health were no longer available. A page from the HHS Office for Civil Rights outlining the rights of LGBTQ+ people in health care settings was also gone as of Friday. The website of the National Institutes of Health's Office for Sexual & Gender Minority Research Office disappeared.
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
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
Do we know they are being actually deleted, rather than just taken offline?
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.