Comments on: UK Biobank & Privacy

By: NautiusMaximus

NautiusMaximus — Wed, 13 Jan 2010 11:30:02 +0000

Good point, Alex. I hadn’t spotted that, but you are quite right. The data are not anonymised, and it’s extremely naughty of them to say so.

There is a term that medical ethicists use to describe this kind of data handling, which is pseudonymised. That’s the term they should have used. Anonymised is just wrong.

By: alex

alex — Wed, 13 Jan 2010 09:34:41 +0000

@NautiusMaximum: I know, it’s the whole trust issue that blows it for me. If the data really were anonymous I might have considered, but saying it is anonymous and then admitting in the small print that it isn’t is not the best way of building trust.

By: NautiusMaximus

NautiusMaximus — Wed, 13 Jan 2010 09:24:15 +0000

I’ve just had my invitation letter. When it comes to reassuring any concerns I may have had about protecting my privacy, they didn’t get off to a good start.

Apparently they got my name, address, and date of birth from the NHS.

Excuse me?

I don’t remember giving the NHS my permission to share that kind of data with third parties. I shall be finding out who the NHS data controller is and having a word. They claim that it’s compliant with the data protection act, but I find that hard to believe.

Sorry, this may be a worthy research project, but they have just totally destroyed any chance they may have had of my trusting them.

By: dotdot

dotdot — Wed, 20 May 2009 13:21:34 +0000

thanks for the heads up – i just got an invite – alas i’ll not be helping.

I’m keen on saving the planet yes – but not via a non transparent process.