Comments on: UK Biobank

By: judith willis

judith willis — Thu, 10 Jun 2010 17:41:25 +0000

Interestingly, today I had a patient attend for routine bp check as she was informed by “bio bank” that hers was raised. She listed all investigations, thought it absolutely wonderful and it was” NHS “… She was perplexed that I new nothing about it. Now I too have read around and am horrified at the prospects, the deception involved and also possibly infringing DPA.
Incidentally, she did not know which blood samples had been taken and informed that all results would not be routinely sent to her Gp.
Clearly ,this needs urgent investigation.
Ethics….not here…..!

By: Amy Lemmon

Amy Lemmon — Tue, 18 May 2010 10:47:46 +0000

All of this is a bit over the top isn’t it? It’s a few drops of blood in a glass phail, participants can refuse to answer questions they don’t like and of course nobody has to do it but perhaps there is just some chance that it may, one day, do somebody else some good. Amy

By: 1984

1984 — Thu, 13 May 2010 20:34:47 +0000

What a cheek to make me an appointment with detais of my name address and date of birth I haven’t given permission to be used. Then they’re going to whip my DNA out of me and store in some huge shed so that when the Regime comes along they can see if I’m any use or not! George Orwell didn’t even think of that one.

By: Adam

Adam — Mon, 10 May 2010 09:48:43 +0000

Hi Concerned

If they said they got the details from your GP, that’s worrying. That’s not where the come from, and they really ought to know that. They come from records held elsewhere in the NHS (I’m still trying to figure out exactly where).

Have you read my more recent update on this story? See the “Recent posts” box, top left.

By: Concerned

Concerned — Fri, 07 May 2010 13:21:23 +0000

I’ve just received one of those ‘invitations’. I called up to ask where they got my details from, a question was sent back to me stating that I’m registered with a GP. I am a female and the letter was addressed to me as a Ms, yet I’m registered with my GP as a Mrs. I reckon that the details came from the DWP.

My advice is do not attend, where will the information end up? I cancelled my Appointment, but if you read on, it states that we might be invited again.

By: Adam

Adam — Thu, 06 May 2010 16:15:38 +0000

Tim, that’s a good question. If you’re thinking of taking part, then you should ask them in detail what it means before you agree. I expect what it means is that if they find that there is something wrong with you (for example, perhaps you have high blood pressure and didn’t know about it) then they will let you know, and ideally (and with your permission) write to your GP so that you can have appropriate follow-up.

But do ask them, because it may well be more complicated than this. And feel free to come back here and let us know what they say.

By: Tim

Tim — Mon, 26 Apr 2010 15:54:38 +0000

The Biobank letter states participants will receive “key results from your examination”.
Does anyone know what exactly this means?

By: Renegade384

Renegade384 — Mon, 25 Jan 2010 12:41:57 +0000

Hi, Very worrying.

Apparently they obtained NHS details under Section 60 Care and services act????

Am submitting FOI to Dpt of health to understand how this occurred.

Am outraged at this, for all our sakes. keep digging!

By: Jo Whelan

Jo Whelan — Thu, 21 Jan 2010 09:41:06 +0000

This laxity is worrying. Government, NHS and other publicly funded projects should have the same rigor in their ethical standards as would be required of a pharmaceutical company conducting a trial.
It seems to be part of a wider picture of lax standards. I consulted the NHS Choices website recently to research a health topic, and one of the useful links provided was to a website that did not meet basic standards of transparency – the site carried no information on who produced it or where the information came from, so I was forced to dismiss it as unreliable. How can official NHS sites link to a site like that – it’s such a basic mistake.

By: Adam

Adam — Wed, 13 Jan 2010 12:14:33 +0000

Indeed you can, Geoff. According to the page on the UK Biobank website rather optimistically titled "Our high ethical standards", it was approved by the North West Multi Centre Research Ethics Committee. I've just submitted an FOI request to try to get the minutes of the meeting at which it was approved. Could be interesting.