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I've opted in to Australia's version of the biobank knowing that it's inevitable that it will be leaked some day, I think the data is so valuable in perpetuity
by anitil 6mo ago
I've opted in to Australia's version of the biobank knowing that it's inevitable that it will be leaked some day, I think the data is so valuable in perpetuity that it's worth it. I remember Ben Goldacre has been working on how to make data more accessible in a safer way to (in part) avoid this very thing, but I haven't heard much of it since [0]
[0] https://www.bennett.ox.ac.uk/blog/2025/02/opensafely-in-brief/ https://www.bennett.ox.ac.uk/blog/2025/02/opensafely-in-brie...
- nxobject 6mo agoI like their idea of an audit log of analysis runs -- beyond transparency, I'm sure it'll help future researchers know how much iteration is needed to work with the messiness of medical records... I'm also amused (in a good way) by the fact that SAS isn't supported as an analysis platform...
- anitil 6mo agoIt's certainly an interesting idea, I remember he was on a few podcasts talking about it. I might submit it here to see if it gets some conversation going
- mfld 6mo agoThis is the right mindset. Securing huge piles of heterogeneous data while giving PhD students the freedom to "play" with it are quite conflicting goals.
- philipwhiuk 6mo agoI have huge problems with Goldacre's project because that project has never been disclosed to the general public let alone some form of opt-in/opt-out.
- harvey9 6mo agoI think the opt out process is the same as the one that came to prominence in the care.data days. It is not a very good process since it is opt out not opt in, and reliant on motivated people searching for a form. On the other hand I like opensafely's approach to security: no individual data is ever shared with researchers.