Your medical data: misappropriated by health-tech companies, off-limits to you

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Originally published at: http://boingboing.net/2016/08/09/your-medical-data-misappropri.html
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  • All personal data stored regarding an individual, must be made available to that individual on request. I believe this is already EU law?
  • All results from analysis of the personal data of any individual, or any group of which the individual is a part, must be made available to that individual on request.
  • If any personal data about an individual is transmitted to another organism, for reasons other than those already mandated by law (tax declarations etc.), a record of that transmission must be retained and made available to that individual on request.
  • An individual may authorize a third-party to handle such requests on their behalf.

Thoughts? I have a suspicion that if we could only see our own data, where it goes and what it says about us, then we might reach some kind of peace with our data-driven future.

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Are accumulated (pseudo-)anonymised data points personal data? And is it possible that probands can be contractually nudged to waive the access rights?

btw, if the studies are part of the drugs approval procedure the multi-year embargo is already part of our brave new world…

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I would like to say no, but maybe there’s some valid justification that I’m not thinking about? It seems like an NDA would be sufficient for your example of “test data exclusivity”. You may not waive your right to view the data but you may agree not to distribute it.

That’s a hard question. In a doop-tatorship I would be tempted to avoid defining data anonymisation in legislation, on the grounds that it is tantamount to alchemy. Ultimately if you’re using data about me to make findings about my in-group, you are using my data to make findings about me and I should have the right to know. You might anonymise the individuals but you can’t anonymise the group being studied without rendering the study meaningless. And for many groups that can be studied, membership cannot be made anonymous. So in my opinion anonymisation should not be an excuse.

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researchers are afraid to delve into this realm, and when they do, they are afraid to publish what they learn.

Feature, not a bug.

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