Access is by study or study subset and so would require a massive distributed project of requests that were falsified or a big internal wikileaks style breach. That would really suck for all the patients who were generous enough to share their data with the assumption it would be protected. I think it is a Bad Thing to be avoided.
Probably. In addition to the damage to those specific individuals, it would make it significantly harder to convince future patients to commit to similar projects. But on the other hand, it would reduce barriers to scientific progress and the authoritarian control of elite institutions from being able to arbitrate which topics are and are not within the Overton Window of Science.
I assume a theoretical leaker would leak anonymously, but I guess if the data set is unique to that study then they could deduce it, unless a bunch of them were combined and mixed together, maybe with some stochastic omissions to further obfuscate what the original data looked like. A deadman's switch might work, where the data gets uploaded to the internet and made public like 10 years later.
But you're right that there would also be the issue that nobody could publish results using the leaked data.
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Notes -
Probably. In addition to the damage to those specific individuals, it would make it significantly harder to convince future patients to commit to similar projects. But on the other hand, it would reduce barriers to scientific progress and the authoritarian control of elite institutions from being able to arbitrate which topics are and are not within the Overton Window of Science.
I assume a theoretical leaker would leak anonymously, but I guess if the data set is unique to that study then they could deduce it, unless a bunch of them were combined and mixed together, maybe with some stochastic omissions to further obfuscate what the original data looked like. A deadman's switch might work, where the data gets uploaded to the internet and made public like 10 years later.
But you're right that there would also be the issue that nobody could publish results using the leaked data.
Your mean publications in scientific journals?... ... one can publish anonymously.
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