Show HN: Tracking the known exposures of health data from UK Biobank

Tracking DMCA takedown notices filed by UK Biobank against GitHub repositories where researchers accidentally published participant health data.
181 points by Cynddl 181 days ago biobank.rocher.lc 50 comments
Summary not yet generated for this article.

Original Text

I'm a researcher studying privacy, and I started tracking the DMCA notices that UK Biobank sends to GitHub. I tracked 110 notices filed so far, targeting 197 code repositories by 170 developers across the world.

The exposure of Biobank data on GitHub is the latest in a long series of governance challenges for UK Biobank. (My colleague and I have an editorial in the BMJ about this: http://bmj.com/cgi/content/full/bmj.s660?ijkey=dEot4dJZGZGXe...). The latest is today, with information of all half a million members listed for sale on Alibaba.

Looking at the takedown notices, we often see specific files being targeted rather than entire repositories (possibly to justify the copyright infringement as required for a takedown notice, not a copyright expert; although it is clear that they only use DMCA notices as a last resort, for GitHub users they cannot identify, and who were likely not given access in the first place). A quarter of the files are genetic/genomics. Tabular data account for another large share and could contain phenotype or health records.

Comments (50 of ) ⌛

Loading more comments... ⌛
Scroll down to load more comments
No comments available.
Type to search HN and engineering blog articles
Press Escape to close  |  ↑↓ to navigate  |  Enter to open