Clinical Practice Research Datalink

Via the No2ID newsletter I have been updated about the Clinical Practice Research Datalink. From the newsletter:

Among the records on an individual that will be made available to researchers are (with more expected to be added in time):

    GP patient information
    Hospital Records
    Disease and mental health registries
    Genetics databases

The Government INTENDS for the persons whose records are being used by the researchers to be able to remain completely anonymous.

As we all know from previous experience, such guarantees may be taken with a quarry load of salt. Anonymous will not remain anonymous.

However, worse –  probably much worse –  is the manner in which civil liberties are being bulldozed:

However the bigger concern is that a consultation is taking place to amend the constitution of the NHS to assume consent for inclusion in the CPRD.

‘…there is a default assumption that… data collected as part of NHS care can be used for approved research.’ (taken from the Department of Business, Innovation & Skills Life Sciences proposal, page 3). Assuming consent for inclusion in medical research is surely a severe infringement on the individual’s civil liberties, raising the prospect of people having their personal medical history being used without their knowledge. In essence the right and assumption of a certain degree of confidentiality in medical records is being usurped by attempts to streamline medical research practices.

That’s right, they will assume that you agree unless you specifically say otherwise. I am penning an email to my GP’s practice forthwith. I do not consent. I will never consent and I intend to make sure that they know full well that I do not consent. They may assume nothing. 

2 Comments

  1. Apropos nothing in particular, other than this is an anti-gubmint rant, I have just received a “Notice of Intention to Prosecute” from the police (GMP to be precise – and after recent tragic events, a tactic that they may prefer to use more often) for speeding (60mph on a motorway, and not a roadwork in sight (site?)). Rather irritated, I checked the given website, to see the evidence: unfortunately, I cannot reproduce them here, as they are heavily protected (I wonder why?). Suffice to say, they are photographs of my car; however, the background contains no information as to location – indeed, two of them could be with the car on my front drive, as the background is non-existent! There is no identification of the camera(s). This is evidence of guilt? A similar clutch of photos could “prove” a pedestrian of walking in excess of 120mph!

    Needless to say, I am being constantly fanned with a kipper to bring my blood-pressure closer to normal. There appears to be no way to challenge or refute this demand, other than (of course) referring to high-charging legal professionals. Oh, British justice….

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