The Cameroid wishes to share our most personal and private medical details with research companies.
David Cameron is to unveil plans to allow patients’ records and other NHS data to be shared with private life science companies.
In a speech on Monday, the prime minister will argue that giving researchers from private sector companies access to NHS information will make it easier for them to develop and test new drugs and treatment.
I’m sure it will. That, however, does not make it ethical. It is not his information to share, it is the patient’s. I guess we could see where things were going when this lot decided to carry on with the NHS spine, despite the privacy concerns. Now, here we are with them willing to hand out this information to any Tom Dick or Harry who is carrying out research.
The opposition merely make weak noises about safeguards. Well, given their record on such matters, they would, wouldn’t they? The best safeguard is to ask the patient if they are willing for such information to be used.
Oh, sure, it will be “anonymised”, but that is besides the point. It is not theirs to give, it is ours and it is our permission that should be sought on a case by case basis should that information be needed for research.
Another letter to my GP expressly forbidding the sharing of any of my notes with anyone not directly involved in my health care will be in order if this goes ahead.
“The Prime Minister will also announce in the same speech that Jews are to be made available to arms manufacturers to aid research into better ways of killing people.”
Well shucks! What a good job I opted out. Presumably anyone who didn’t can still have their records removed?
If so do it now!!!!!
I also opted out.
I don’t think Cammers means “share” though. Most likely “sell”. Wonder who gets the cash for our details, us or the government. Actually, I don’t wonder at all.
Of course he may be willing to just give the information away if enough of his mates have enough shares in the companies receiving our details.
Its very rare that I don’t agree with you on something, but on this, I am not entirely convinced it is a bad idea. What is crucial is that the data is utterly anonymised, for sure.
In general, where data does not pertain to a person, I would have thought it belongs to the person collecting/paying for the data. Where data relates to individuals, the individual concerned should have power over that data, and how it is used. However, when data is anonymised, it no longer relates to individuals.
Assuming anonymoisation, the Life Science companies get much needed data, the NHS gets extra funds (no, I don’t agree with there being an NHS, but whilst we are stuck with it, I prefer it to get funds from somewhere other than the long suffering taxpayer), and we all eventually get new treatments.
You might have faith in their ability to properly and securely anonymise the data. I am less trusting, given the evidence of rank incompetence when it comes to the state and data.
Ha, yes, there is that. In fairness though, it is not so much that I have faith in their ability, as my point assumes that ability. Having been involved in anonymisation of patient data, I agree that it is more complex than simply redacting names, addresses and the like, and there is indeed scope for cock up.
But cocking up the anonymisation process is a different basis for objection than the sharing of anonymised data itself.
Didn’t they do something like this in Iceland with the entire country’s genetic information ? Does anyone know how that went and what happened to the data, does it belong to some obscure hedge fund now or has everyone in the country had their chromosomes downgraded after the default ?
I object for both reasons; incompetence and principle. If someone is to take information that is of a deeply personal nature, anonymise it and either give or sell it to a third party, then the ethical thing to do is ask before the anonymising even starts. Patient records are, after all, supposed to be private and confidential…
As for ownership of the anonymised data, without the subjects there wouldn’t be any data.
I don’t know what happened with the Icelandic story.
The data is only of a deeply personal nature when it can be tied to an individual. If properly anonymised, then it is no longer personal information. Knowing that Fred has genital warts is indeed deeply personal, knowing that N people in the UK have genital warts is not.
Data denuded to that level of detail isn’t likely to be of much use to anyone, though, is it?
Granted, and that really was more by way of illustration. However, clinical data that is devoid of identifiable information – but not denuded of clinical information – is extremely valuable. Data mining techniques alone can extract very useful information.
ISTM that here we have property rights and privacy rights in conflict. The data belongs to the NHS, but it is about individuals. Whilst that data is traceable to individuals, I think that privacy rights should trump property rights. However, once that data has been anonymised, I think that given no privacy rights are being breached, the property rights should allow the NHS to sell/give that data away.
Data used in such research is ALREADY ANONYMISED.
What Camoron is ham-handely trying to say, is that the data will be made more widely available.
ASSUMING it is the same, properly anonymised data, then no problem at all.
Please note the caveats.
Not that anonymous, it seems… 😐
I’ll be opting out.
Actually this was always the plan for the Secondary User Service that was put in place by the previous Labour government under the National Program for IT
There were some serious questions raised at Information Governance meetings, but they seemed to have been ignored.
Many people do not know that this sort of thing is carried out at practice level as it is. Still knowing the NHS mistakes will happen.