"There may be a point at which it really does make sense" Really?
"There may be a point at which it really does make sense for assumed – but also informed – consent to be the default model for sharing medical data"
It's not sufficient (and never will be) to merely be informed that some person or agency is doing something you disapprove of or wish to resist. If there is no choice, there are no rights.
There are typically two alternative data sharing scenarios. Either a proposal is so draconian that a majority will want to opt out, whereupon it shouldn't be implemented, or only a small minority will want to opt out, whereupon loss of that data should not seriously affect statistical results. In either case there's no justification for sidestepping personal choice.
What policy makers tend to forget is that every issue is multi-facetted. Focusing on an apparent advantage of one aspect commonly leads to unexpected adverse consequences. But those consequences rarely affect the policy makers directly, so they are frequently ignored.
Biting the hand that feeds IT
