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Patients must know how their health records are used – and approve any sharing for research

Mike 137 Silver badge

"Claims that prior informed consent is just “too difficult” or “too burdensome” self-interestedly disregard people’s lawful rights to dissent or opt out."

Entirely correct. This is another example of a clearly prevalent mind set that advocates abandoning data subject rights in general in order to support (in the words of a recent DCMS request for comments) 'driving growth and unlocking innovation'. It sits very well alongside the current government proposal to repeal Article 22 of the GDPR, which provides for a data subject to require explanation and review of entirely automated decisions that have a material effect on their rights or freedoms. The result would be "computer says no" enshrined in law, with no route for redress.

It's become perfectly clear that 'digital progress' is more important than the people it's supposed to serve, quite possibly because it's a big bucks business that promises to make a few very rich people even richer. So it's being rushed ahead regardless of possible consequences. However, as I said in my submission to the RFC referred to above "Where lives and livelihoods are at stake, even in the name of progress the public can not legitimately be considered an involuntary test bed for systems development".

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