Anyone else been asked to take part in Biobank?
www.ukbiobank.ac.uk/

I got a letter today - exactly one week after I opted out of having my medical records included in a national database.

I'm sort of in favour of big, open, long-term medical studies. I'm not in favour of every Tom, Dick and Harry having access to my records. Apparently I'd have to turn up at a local 2-3 hour appointment where fluid would be taken and I'd get the results of that, then they'd follow my health long-term via my GP.

Decisions decisions. What would you do? Have you been asked?
( The Light in Chains don't touch the Pope's boner, Fri 30 Apr 2010, 23:08, 9 replies, latest was 16 years ago)

I would never have it tracked.
Is it something potential employers could access?
( Batshitmentalist is sane for once, Fri 30 Apr 2010, 23:39, Reply)

according to the website no
but I guess it depends how resourceful your future employer is. Can they bribe a minimum wage drone? I suspect they could.
( The Light in Chains don't touch the Pope's boner, Sat 1 May 2010, 0:10, Reply)

My doc doesn't
even know about my hospitalizations for batshitness, I certainly wouldn't want it on a national database (doc has an idea, but if I confirm he's obligated to put it on my records)
( Batshitmentalist is sane for once, Sat 1 May 2010, 0:17, Reply)

Nope - it's entirely confidential.
I think that the general idea is that, over the coming decades, some participants will develop, say, Parkinsons or COPD or something like that; it'll then be possible to look at their genomes to see if there's any gene that these people have in common, thereby gaining a huge epidemiological insight.

There's nowt sinister about it.
( Enzyme is powered by sunlight, Sat 1 May 2010, 9:09, Reply)

Just out of curiosity -
why did you opt out of the NHS database? All it does is mean that your records are instantly available all over the country.

I don't see any particular problem with confidentiality that isn't already there; and a wholly electronic version that's accessible on a need-to-know basis is probably more secure than what we have now, on the basis that there's fewer links in the chain... (It's not as if every Tom, Dick and Harry has access to your records now; why would that change?)


EDIT: I know several people who think that participation in medical research is a moral duty. I don't think that that's obviously correct - though it might be right, the arguments presented don't seem watertight - but I'm willing to accept that it's hugely admirable. It's possible that participation in Biobank is one way to discharge that duty (or near-duty).
( Enzyme is powered by sunlight, Sat 1 May 2010, 9:11, Reply)

Morning Enzyme - you sound on fine form -
Some time back there was a short story/ urban myth going about - you might recall it. (Sorry-can't find web page or source just now.)
Chap mislays a library book while packing to move, and tells the librarian he'll return it at his new local library. She logs this into the computer system -'N.Phledge to return 'Kidnapped, R.L.Stevenson, to Tunbridge Wells'. Through a broken linkage of misunderstandings and transferred data this ends up as a police hunt chasing a fleeing kidnapper: the chap who is moving house.
Whatever the intended aim of the story it became another prop to the 'Any organisation of hacker could get my details and misuse it' argument against national databases.
It's a hard argument to beat that - one that has no substance to thrust against.
( Larry Vest One day at a time, sweet Jesus, FFS., Sat 1 May 2010, 9:59, Reply)

Heh.
There's no arguing against urban myths!
( Enzyme is powered by sunlight, Sat 1 May 2010, 10:50, Reply)

I read around about it before I received the notification
Generally GPs don't seem very keen on it, and various organisations are raising concerns too.

www.guardian.co.uk/commentisfree/henryporter/2010/mar/02/nhs-spine-database-opting-out probably made my mind up.

I'm going to read more on Biobank but I reckon I'll end up doing it.
( The Light in Chains don't touch the Pope's boner, Sat 1 May 2010, 10:26, Reply)

Hmmm...
I don't buy the point the article's making. First up, it seems to pander to the false belief that most people's medical records are very interesting indeed, and worth leaking. Second, worries about the database smuggle in the assumption that the current system is more secure than the proposed one. Third, the idea that the number of people who has access is, in its own terms, important is bunk: I don't see why that should be at all. If I'm in Glasgow when I brake my arm or have a heart attack, I'd want more people - specifically, the people in the hospital - to have access to my records. Fourth: the stuff about "government agencies" - tinfoil hat, much? Fifth, the doctors' questionnaire mentioned is misleading, because, as described, it suggests that the choice is between information being kept confidential with the GP, or a national system with no confidentiality. The reality is that there's a third option, which is a confidential national system - which is, by coincidence, what the new one would be (and would have to be under the DPA, and quite possibly as part of your Article 8 rights). Sixth, there's a confusion of privacy and confidentiality; I'm not sure that that makes much of a difference overall here, but they shouldn't be run together anyway.


... and breathe!

Righty-ho. I'm off until tomorrow. See y'all then!
( Enzyme is powered by sunlight, Sat 1 May 2010, 11:00, Reply)