What a Piece of Work

Stephen, commenting on Neil Harding’s Jeremy Clarkson post tries to reason with the unreasonable. Like me, Stephen is an erstwhile Labour supporter. When talking about data sharing he raises, perhaps, the most important issue regarding the matter; that of consent:

An essential aspect of this debate about data sharing is consent, the consent of the person who owns the data, that is, the person whose data it is. I don’t object to all data sharing but I do object to data sharing without my explicit consent. Contradict me if I am wrong, but I think your view is that consent is irrelevant. Perhaps you could study this story.

He points to this story that demonstrates what can happen when consent is not obtained:

Cancer registries use confidential patient data in research to combat disease but it includes names, addresses and other personal information held on case notes.

The drawbacks of this data-sharing are highlighted by the case of a junior doctor with a rare disease.

She received upsetting and intrusive phone calls about her illness from researchers. When she complained, she was suspended by her employer and even now is bound by a gagging order from publishing her case. She’s been legally gagged by a hospital trust and she’s not able to be identified because of a court order.

Frankly, reading it, I was horrified. Not only has this woman’s private information been shared without her consent; she was subjected to unwanted phone calls by researchers and when she complained, she was punished for it. This case has been dragging on for five years and the court has found in her favour. Whatever the detail of the case, it does demonstrate an appallingly cavalier attitude towards patient confidentiality and an utter contempt for privacy.

According to the High Court statement her private medical details, in fully identifiable form, were disseminated widely for the purposes of research and passed to her employers despite her withholding consent.

“Private medical details in fully identifiable form.” This is fucking outrageous by any reasonable standards.

Of course, it was the issue of consent that was the crux of Stephen’s perfectly reasonable point. Shall we go back to that and see how things develop?

Neil’s response:

My second thought is ‘what a miserable bitch’ in refusing for her data to be used to help others suffering from cancer (says a lot about her sympathy for others – some doctor!). Of course it is her right to be a seIfish miserable person I admit, but still doesn’t alter the fact she is not acting very community spirited.

My god! What a fucking evil, misanthropic, cold-hearted bastard. I always knew that Neil was a totalitarian at heart; that he has no respect for personal privacy; that he is blinded by New Labour dogma and demonstrates a staggering ignorance of historical precedent; this I already knew, just as trying to reason with him is like repeatedly beating one’s own head with a lump of two-by-two (which is why I tend to avoid commenting on his blog these days). However, despite this, I had always regarded him as nothing worse than a bit of a buffoon, but otherwise relatively harmless (providing he is never given the opportunity to exercise his politics for real), but this really stoops to an all-time low; this is nothing short of Stalinist. He has no humanity.

So, there you have it, the “community” is more important than privacy, human dignity and patient confidentiality. Indeed, the individual is expected to sacrifice all of these for the good of the community in Hardingworld.

Yet, without these things, the community cannot claim to be civilised. Without consent freely given, sacrifice is meaningless.

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Updates: Via DK, Dr Aubrey Blumsohn has more on this case. He uses the BMJ as his source. Unfortunately, unless you are a subscriber or want to pay for the article, you can only access a snippet of the text. Dr Blumsohn gives a précis the facts of the case, though.

On the matter of facts, Harding comments further:

I have tried to find out some more info on this case – from what I have found it suggests there is a lot more to it. Without detailed knowledge of what actually happened it is difficult to say what happened and what didn’t.

Irrelevant. The court found in Dr Z’s favour and the employer has unreservedly apologised. Nothing more to add to that.

This is what I believe happened. She did give consent (maybe without realising – small print on a contract she signed). When contacted by a researcher (they were not trying to hide the fact they were using her data) she went ballistic (understandably maybe because of her condition).

So, in the absence of the facts – or despite them – Neil simply makes it up to suit his argument. This is a piece of fiction.

They apologised and agreed not to contact her again but she refused to do her job properly until they destroyed some important research that contained her data.

Where is the source for this? Oh, that’s right, there isn’t one. Neil made it up.

They pointed out that she initially had given permission and the costs would be very high to both the programme results and financially. She continued to not do her job properly and was disrupting her employers work which led to her dismissal.

Evidence of this? Oh, that’s right when people have false allegations made about them, this translates in Harding speak to disrupting her employers. You really are an egregious, poisonous little cunt, Neil. And that’s word I rarely use, but your behaviour here is so utterly reprehensible, so morally bankrupt, that it is the only word that fits. Every reasonable person I know who has seen this is horrified because they understand how they would feel if their private medical notes were disseminated without consent.

Though the courts took her side in this, morally she is not in the right as much as one would assume from the way the story is originally written. Both parties agreed to details being made confidential for obvious reasons (there is no-one being gagged). She took the substantial compensation, the research data was destroyed (putting back cancer research by years) and refused the offer of her old job back. End of story.

You snivelling, malignant, evil little shit. She is entirely morally right – which part of “made false allegations” and “unreservedly apologised” do you not understand? What part of “informed consent” do you not understand?

According to Dr Blumsohn, who gets his information from the BMJ (as opposed to Neil’s imagination) there is, indeed, a gagging order, something reiterated in the Channel 4 account. Which are we to take seriously – two independent reports giving the same account or Neil, a known liar?

Neil Harding; unredeemable, obnoxious little sociopath.

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Update: The Ferret Fancier has more of the BMJ article. This from Dr Z is the crux of the matter for me:

I raised concerns relating to unethical research practices which threatened patient confidentiality and were being conducted in breach of the law.

“Unethical research practices” and “…in breach of the law” are crucial phrases. However, as far as statist bullies like Harding are concerned, ethics and the law are irrelevant…