Massive, Unarchivable Datasets of Cancer, Covid, and Alzheimer's Research Could Be Lost Forever

[u/Agreeable-Rooster-37]

https://www.404media.co/nih-archives-repositories-marked-for-review-for-potential-modification/

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[u/fuckmarjorietgreene]

Can someone 25th amendment this motherfucker already.

[u/fuckmarjorietgreene → u/[deleted]]

Takes too fucking long.

[u/jazzhandler → u/[deleted]]

The other amendment?

[u/DiesByOxSnot → u/jazzhandler]

ANY of the amendments this fucker violated.

[u/Enough-Collection-98 → u/[deleted]]

They’re busy cosplaying as patriots

[u/bravetailor]

Anyone able to explain why this research isn't archivable? Not going to sign-up to this site just to read one article. Any kind of important research, especially on this level of importance, should have some system of archiving.

[u/NinjaLanternShark → u/bravetailor]

Unlike other government datasets or web pages, downloading or otherwise archiving NIH data often requires a Data Use Agreement between a researcher institution and the agency, and those agreements are carefully administered through a disclosure risk review process.

So there's potential PII with some of this health data, and nobody in the current government cares enough to do the paperwork.

So "unarchivable" means the data can't leave the NIH.

[u/bravetailor → u/NinjaLanternShark]

Thanks. That sucks but I'm guessing in the future after this administration is gone they'll be looking to do things differently.

[u/CharacterUse → u/bravetailor]

The Data Use Agreements and disclosure risk review are necessary to prevent confidential personal information of patients being released without adequate protection. You want those protections to be in place.

The idea is data should be archived by the NIH itself. Hopefully even if the public-facing repository is modified or deleted, someone at the NIH will have the integrity to keep the backup copies they undoubtedly have safe, buried in a box in the basement or smuggled out.

[u/ThroughSideways → u/CharacterUse]

that's my fear, we have a situation where people are reduced to smuggling the backups out in boxes of hard drives. I can't get to the article, but do we have an idea what archives are at risk? The title sounds like the Covid database, and the cancer genome atlas, but I wouldn't put it past this administration to see no point in any of genbank.

[u/Squirtsack]

It's almost like Russia is running the government. 

[u/psly4mne → u/Squirtsack]

American government does American thing in America: This must have been Russia.

[u/Hypnotized78]

Republican Taliban.

[u/Random-Cpl → u/[deleted]]

The last thing I want to hear in response to this heartbreaking story of tech bros ruining everything is what some soulless AI has to say