Comment by anitil
13 hours 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-brie...
This is the right mindset. Securing huge piles of heterogeneous data while giving PhD students the freedom to "play" with it are quite conflicting goals.
I 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...
It'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
I 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.