That's a great fix for some things, but not for others. Also data sharing is very good in some areas, but when you're working with massive population health datasets it's often impossible to share even deidentified raw data
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I think that's where all the conversations about this bog down. And sometimes I think it's much more convenient for researchers not to share data, and claims of contractual issues allow them to do this. But the privacy concerns are of course legit - I just think they're solvable.
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I do think there's a very real disconnect between the ambitions of data sharing and the expectations of someone whose data is being used in some of these studies. They might consent to have their information used in the study, but sharing it widely is another thing
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in the EU you have to inform persons about the intented use of the data. Using it for other purposes is not allowed. Also, people have the right to withdraw consent anytime, which would require to delete their non-anonymous data from every (!) dataset that includes it.
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