21–30 of 61 posts
What are the pros/cons of just open-sourcing everything for future bio bank projects?
Hard to do. The same people with the collection and tracking infrastructure required are infinitely sue-able so you need legal protection if anything goes wrong.
The irony is, they don’t even provide the data to the participants themselves.
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It's exceptionally difficult to avoid the data being de-anonymised. If an 'anonymised' medical record says the person was born 6th September 1969, received treatment for a broken arm on 1 April 2004, and received a course of treatment in 2009 after catching the clap on holiday in Thailand - that's enough bits of information to uniquely identify me. And medical researchers are usually very big on 'fully informed conse…
In my experience with health data, the dates are usually offset by a random but constant amount for each person (e.g. id 12345 will have all their dates shifted by +5 weeks) to avoid identification by dates. Unfortunately the sequence of treatments and locations are usually enough to identify someone, especially if it's a rarer condition.
> It has given 20,000 researchers around the world access under strict agreements that prohibit sharing data further. To me it seems rather naive to have done that. After all, you can't un-leak medical data. So even if the "strict agreement" included huge punishments, there's no getting the toothpaste back in the tube. If you want to ensure compliance before a leak happens you have to (ugh) audit their compliance. An…
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...
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 has given 20,000 researchers around the world access under strict agreements that prohibit sharing data further. To me it seems rather naive to have done that. After all, you can't un-leak medical data. So even if the "strict agreement" included huge punishments, there's no getting the toothpaste back in the tube. If you want to ensure compliance before a leak happens you have to (ugh) audit their compliance. An…
That’s insane. And what does researcher even mean - some random university student? What would they know about securing that data? I wonder if the people whose data is out there even know this is happening
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That’s insane. And what does researcher even mean - some random university student? What would they know about securing that data? I wonder if the people whose data is out there even know this is happening
The people involved are volunteers. The rules for getting access are readily available, and clearly don't include "some random university student": https://www.ukbiobank.ac.uk/about-us/how-we-work/access-to-u...
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The people involved are volunteers. The rules for getting access are readily available, and clearly don't include "some random university student": https://www.ukbiobank.ac.uk/about-us/how-we-work/access-to-u...
They clearly do include "some random student" as the data can be shared with others from the eligible research group which are almost always university students who have zero clue about itsec.