Hi

I'd definitely kick this off with a complaint to the Information Commissioner. It can't be done anonymously as far as I know (I say that in case you were tempted to try) but it is very easy to do and automatically lends weight to the argument that people are concerned about this (as I think they are very wise to be).

I would consider complaining to your GP too, although when I tried to do so over NHS confidentiality in relation to the "NHS Spine" project (centralising all local records onto one big database) my GP was quite hostile and suggested that because "four thousand other of [his] patients have not complained" that I should go along with it too (I didn't pursue the line that people are generally stupid these days and are happy to be lead by others - it would only have exacerbated the discussion). He took my complaint as a direct attack on his patient confidentiality ethics, which was not my intention at all.

I'd commend the NO2ID campaign "The Big Opt Out" to you which is directly related to the above. Taking part in this I think is a good step also ( http://www.nhsconfidentiality.org). My minor concern with this is that because people won't opt out in their thousands, the system will still go ahead, and meanwhile they will need to keep a database of "troublemakers" somewhere so that they know not to store those records centrally (if indeed they respect their wishes in the first place). This means that a small number of people who are quite privacy-sensitive will be identified on a database - not good if said information (plus their medical records, wherever they have got to!) gets into the wrong hands.

Best of luck in challenging this. If you can afford to, donate to The Big Opt Out or NO2ID directly. They need every penny they can get to carry on their meticulous work, and from what I have learnt about them and speaking to a few people involved, they apportion their limited funds very wisely.

Thanks for the advice Jon but I wonder how well you are informed about these matters.

The Information Commissioner takes c 3 months to consider whether they will register a case. Then, having accepted this, they sit on it for months on end. I know because I have referred several cases to them in the last 12 months. In the last case, they told me in March 2008 they it was being passed to a caseworker. Nothing since and an enquiry from me 10 days ago, elicited the response that they have yet to do anything more as they are overloaded with work! Cases they take on are subject to lengthy delays and then they close them down with the slightest excuse. It is a farce and of no use whatsoever. The whole body is a sham designed to let people think they have redress when the reality is nothing can be done of use via this body.

My doctor has been told (for the last 2 years) that I am not to be put on the NHS spine and that no one should be able to access my records. As you say, this is considered to be a sign that I am one of the awkward squad, well I am in that I don't accept that all and sundry should be able to read my medical records on a whim. There are security aspects too as it means that thousands of NHS staff can find out where I live and my telephone number. There are reasons why this is not a good idea. I have seen the Big Opt Out and printed off their form. I have read that patients who send these in are regarded as a threat and the doctors have to advise the Department of Health when they get these from patients. I do wonder whether they act on my wishes and unless I can find someone to test this, I have no way of knowing.

In the UK, my experience shows that Big Brother has the upper hand in all this. Try challenging things via the bodies supposed to act, Ombudsman, Healthcare Commission, Information Commissioner etc and you soon find that they are designed to bury complaints and not assist people at all.

So far those "invited" to take part in biobanks lovely altruistic health census are the over 55's (I think) Statistically this group are quite compliant and worried about their health. I wonder if it is a practice run to try this DNA gathering technique on other sections of the population later, find out how best to persuade people to part willingly with their DNA rather than have to use force.. which will probly come later after all the nice helpful sensible people have done their bit for "medical research".

The age range stated on the forms is 40-69. May be they think we are too ga-ga to realise what they are up to.