tek-monkey
wanna see my snake?
So if we don't want our medical data 'used in research' we have to opt out? Fair enough, it's very important to be able to research but a patients records contain private info. This is a personal choice, I'm fine with that, and they promise to anonymise your data where possible.
Looking at who they'll give it to is a bit vague, and who'll they'll decrypt it again for even more so (just where legal, and who knows what laws will apply to it). But then you look a bit further and realise there's a section on when they will ignore your decision and share the data regardless against your wishes, and one of those clauses is when they have anonymised it first?
So you aren't opting out of your data being used, you're opting out of them being allowed to share it's you the data is about. Some won't care, some will, but you cannot take it back once it's out there whereas you can always choose to share it at a later date. I have many problems with this, but I'm curious if anyone else does and nobody I've spoken to recently seems to care.
https://www.nhs.uk/your-nhs-data-matters/manage-your-choice/
Looking at who they'll give it to is a bit vague, and who'll they'll decrypt it again for even more so (just where legal, and who knows what laws will apply to it). But then you look a bit further and realise there's a section on when they will ignore your decision and share the data regardless against your wishes, and one of those clauses is when they have anonymised it first?
So you aren't opting out of your data being used, you're opting out of them being allowed to share it's you the data is about. Some won't care, some will, but you cannot take it back once it's out there whereas you can always choose to share it at a later date. I have many problems with this, but I'm curious if anyone else does and nobody I've spoken to recently seems to care.
https://www.nhs.uk/your-nhs-data-matters/manage-your-choice/