Re: research purposes unrelated to my care.
I'm not sure it is best to be too narrow about what constitutes "my care". For example, although your care needs now may not overlap with some specific research purposes, they may well be likely to in the future (e.g. you might get cancer, or have a stroke, which perhaps isn't in the your-care-right-now category, but might be in ten years time - your existing data might contain an as-yet unnoticed hint of future problems).
That is just another way of saying that patient data should be used for any bit of health-related research, on the rather thin basis that the participants may one day catch something.
This is explicitly not what patients currently consent too - the data is for their personal immediate care. When people consent to be participants in research projects (which includes reusing data collected for other purposes), they have to give informed consent, which means they cannot consent to a purpose they don't understand let alone don't even know about. These rules came about because many of the darkest parts of recent history are littered with medical research projects where researchers abused participants who did not even know they were part of an experiment.
Biting the hand that feeds IT
