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1 May, 2006

Pro choice

Visiting the Cancer Research UK website a few minutes ago to unsubscribe from an unsolicited e-mail newsletter (I'm a supporter, so they had my details, but I definitely opted-out of being contacted by e-mail.  Cheeky ****ers.), I discovered a startling press release they made available last Friday.
I'll let you read it yourself, but they claim the British people are happy to surrender privacy if it might help research into cancer.  The accompanying evidence fails to prove that interpretation, and I oppose the assertion.

More than 80 per cent think there should be a law making cancer registration compulsory.
If there was some guarantee that this was subject to medical confidentiality, the idea might have some merit. **** it; no it wouldn't; I presume most individuals would choose to assist research by volunteering information, but it should still be voluntary. That's on principle, but more practically I'm concerned that compulsory registration might be fed through to insurers, which would transform the scheme into compulsory incrimination.
The results dispel the belief that people are always more concerned about their right to privacy than public health.
Absolutely untrue! As I said, most people might be expected to opt in (I would), but it must be optional. Individual rights, including privacy, come first. The only exception would be if non-disclosure would actively harm others; if someone had a communicable disease, for example. That doesn't apply to cancer.
And it shows there is strong support for identifiable medical details to be given without consent,...
Nothing in the press release justifies that statement.
... provided they are only used in confidence for public health research by recognised research organisations.
Nothing in the press release offers that guarantee, only a vague intent. An absolute, unambiguous and unmodifiable guarantee would be the minimum requirement for acceptability.
“This survey shows categorically that the vast majority of people do want their personal health information to be shared for the collective good, if it could lead to improvements in the diagnosis and treatment of cancer.”
Then a voluntary scheme would be more than adequate; researchers would have more data and experimental subjects than they could ever use. However, the rights of the 'tiny minority' to withhold their private data must be protected.
The National Cancer Registry monitors trends in the incidence of cancer and survival from the disease. Cancer survival comparisons based on National Cancer Registry data are the only way to compare the overall effectiveness of cancer diagnosis and treatment between different regions of the UK, between rich and poor patients, or between the UK and other countries.
Though I'm fundamentally opposed to compulsory provision of individuals' private details, I'd fully support registration, including compulsory, of anonymised data for epidemiology and medical geography. I have absolutely no problem with that, and agree that it would be immensely valuable for 'the communal good'. That doesn't conflict with my heart-felt belief that submission of identifiable personal information must remain voluntary – one doesn't imply the other, nor preclude it.
"The results of this survey show that absolute privacy is not the priority of ordinary members of the public. The vast majority of people are happy for information about them to be used for the wider public good, provided the information is kept confidential and secure. Government policies should recognise this support for public health research."
Paraphrasing and restating earlier paragraphs, which I've already addressed, doesn't make them any more compelling. Cheap tactic.

What a dreadful mis-use of statistical information. As usual, the actual questions asked are not shown, merely an interpretation of the questions asked and the responses given.

The holes in the argument are big enough to drive a supertanker through. 3000 people (out of 60 million) is not a huge sample to make such statements. Additionally, we are not given any info as to the demographics of the sample from which these results were taken.

And it is the questions that are the key. Certainly, if I were a cancer sufferer I would hope that the registry would hold my name address and postcode so that I could be made aware of any new treatments. That is not the same as holding it to be shared "for the collective good".

It is often the case, as was superbly demonstrated in an episode of Yes (Prime) Minister that any survey can be commissioned to reveal the results required depending upon the questions asked.

Posted by Selina at May 1, 2006 11:01 PM
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