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> It looks like you are trying to drift the intent and scope of the dataset disclosure. No. Intent doesn't matter. That's the whole point. To wit: there's a
by throwawaygh 5y ago
> It looks like you are trying to drift the intent and scope of the dataset disclosure.
No. Intent doesn't matter. That's the whole point.
To wit: there's a reason that reidentification attacks are called attacks! No one intends to be hacked, and writing a program that you intend to be secure doesn't imply that the program is in fact secure. So too with anonymization.
> having an open dataset of MRI pictures
But we're not talking about MRI pictures, are we?
OP strongly believes that, in this case, there is enough information to re-identify patients. I agree.
- rvnx 5y agoOk then next steps: Plan A: - sit and do nothing "it's impossible to release any data, too bad, we'll never know!" Plan B: - "we have a risk that a few % of ppl may be identified if we already know their medical history/details, it's impossible to release any data, too bad!" Plan C: - "we remove the biggest identifiers to make sure the majority of the people cannot be reasonably identified, this is going to take a few days or weeks of work but will bring benefits to the overall population and transparency on the treatments"
- throwawaygh 5y agoWhy don't you include a step where you ask patients if they're ok with their medical history being put in a public s3 bucket? I'm fully supportive of the right to pseudonymous speech, but it strikes me that you are in an awfully awkward position of speaking anonymously while demanding that you should have access a trove of patient history without signing any sort of data use agreement and without even the most basic step of getting permission from the people whose patient history you insist on seeing.
- rvnx 5y agoOk, why not, this is what I propose: Asking the user: "This record is going to be shared publicly, do you agree to share this information (without revealing your name and address) ? > [...] This information can help researchers, doctors and people interested into science to discover new information about drugs and diseases interaction."
- ceejayoz 5y agoCool. Now you’ve got a whopping pile of selection bias added to the dataset.
- rvnx 5y agoYeah, useful selectors for researchers, and still no identity. We learnt that somewhere there is a man/woman that is depressed and has weight management issue. We can take policy actions in order to improve the situation and monitor how this affects life of people (e.g. how much antidepressants are used in a year, are the food policies effective, what conditions are often linked to sudden cardiac arrest, etc). And "Rebecca", nobody knows it's her, except herself, and those to whom she decide to publicly disclose her conditions (e.g. on social networks or to specialists).
- ceejayoz 5y agoNo, you’re missing the point. Asking people in the study if it’s OK to release their data means the resulting data set is skewed. People with certain conditions and other variables will be more or less likely to agree, leaving a non-representative sample of the actual study. It will no longer be random.
- throwawaygh 5y agoExactly. Actually, set aside consent entirely. The problem is NOT "how do we de-anonymize". That is super easy. The problem is "how do we de-anonymize IN A WAY THAT LEAVES RESULTS OF RELEVANT STATISTICAL TESTS INVARIANT". Much harder. Remove a bunch of probably non-random points and make any logisitic regression on that dataset return the same result within some delta. There are trivial impossibility theorems. Really, really trivial. "Left as freshman exercise and if you can't some up with an example maybe step back and stop talking about this topic" trivial. Now, add back consent. "how do we delete a subset of data that is likely not uniformly distributed with respect to risk variables and also de-anonymize the remaining subset of data.... AGAIN, IN A WAY THAT LEAVES RESULTS OF RELEVANT STATISTICAL TESTS INVARIANT". The position is untenable.