The inimitable
Ross Anderson, Professor in
Security Engineering at the
University of Cambridge Computer Laboratory, has succinctly pointed out the importance of opting out of the
latest NHS data grab before it is too late. I hope he won't mind me reproducing his
advice here in full:
"The next three weeks will see a leaflet drop on over 20 million
households. NHS England plans to start uploading your GP records in
March or April to a central system, from which they will be sold to a
wide range of medical and other research organisations. European
data-protection and human-rights laws demand that we be able to opt out
of such things, so the Information Commissioner has told the NHS to
inform you of your right to opt out.
Needless to say, their official leaflet is designed to cause as few
people to opt out as possible. It should really have been drafted like this. (There’s a copy of the official leaflet at the MedConfidential.org
website.) But even if it had been, the process still won’t meet the
consent requirements of human-rights law as it won’t be sent to every
patient. One of your housemates could throw it away as junk before you
see it, and if you’ve opted out of junk mail you won’t get a leaflet at
all.
Yet if you don’t opt out in the next few weeks your data will be
uploaded to central systems and you will not be able to get it deleted,
ever. If you don’t opt out your kids in the next few weeks the same will
happen to their data, and they will not be able to get their data
deleted even if they decide they prefer privacy once they come of age.
If you opted out of the Summary Care Record in 2009, that doesn’t count;
despite a ministerial assurance to the contrary, you now need to opt out all over again. For further information see the website of GP Neil Bhatia (who drafted our more truthful leaflet) and previous LBT posts on medical privacy."
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