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There are legitimate cases for approved release to private citizens. For example, the standard for public health cancer research is getting records from state
by vharuck 6y ago
There are legitimate cases for approved release to private citizens. For example, the standard for public health cancer research is getting records from state registries.
Of course, in those situations, the requirement is that no personal identifiers will be leaked, and it's for the public good.
- travisoneill1 6y agoRight but if the records are anonymized, then why can't the public view them. The research is going to be published anyway and then that sample will be public anyway.
- vharuck 6y agoThey are not anonymized. We may not always give out things like contact information or fields specifically for joining to other datasets, but we assume the provided data is enough to reasonably identify patients. Age, city, date of diagnosis, race (which can be specific nations for Asian and Pacific Islanders), and the fact they have cancer can be very good clues. If the requestor knows somebody with cancer, it wouldn't be hard to learn other things about them by looking up their record.