I received news this morning that some NIH repositories now have a message: “This repository is under review for potential modification in compliance with Administration directives.” Many of these repositories have controlled access data (because of they involve human medical data – I probably don’t have to say it, but please don’t share restricted human medical data openly…), but some have open access/unrestricted data.
Some of the affected repos:
- DASH Data and Specimen Hub.
- National COVID Cohort Collaborative.
- The DANDI Archive.
- The Brain Image Library.
- The Cancer Imaging Archive.
- BioData Catalyst.
- National Sleep Research Resource.
- National Alzheimer’s Coordinating Center.
- AgingResearchBiobank.
- Seattle Alzheimer’s Disease Brain Cell Atlas.
- ApoE Pathobiology in Aging & Alzheimer’s Disease.
- Child Language Data Exchange System.
- LDbase.
- Cellular Senescence Network (SenNet).
- The National Center for Advancing Translation Sciences’ OpenData Portal.
- Catalog of the NINDS Human Cell and Data Repository.
- The Brain Research Through Advancing Innovative Neurotechnologies Initiative.
- HIV databases.
- The Neuroscience Multi-Omic Archive.
- The Human Health Exposure Analysis Resource Data Center.
- Mouse Models of Human Cancer Database.
If they’re “unarchivable”, how are they online in the first place? At some point, the data sets were broken down so they could be read and searched via computer. Why can’t that information be backed up?
I must be misunderstanding the headline.
The article mentions how its human medical data that shouldn’t be public, its not a technical issue but a privacy one
