I was approached recently by Professor Dame Sally C Davies and Professor Rory Collins, who wrote on behalf of the Department of Health to ask me to participate in a programme called UK Biobank. Their ambitious aim is to sign up half a million Brits aged between 40 and 69 and monitor their health over a number of years.
Creeping in at the very bottom of the age range, I perhaps have the most to gain from this long-term project, as potentially they'll be able to identify trends that will help in the fight against disabling and life-threatening illnesses. Nevertheless, I've told them to get lost.
They want three tablespoons of my blood, as well as saliva and urine, but that's not the only way in which they're taking the p**s. I'm expected to attend a two-hour appointment at a centre which is inaccessible by public transport from where I live. The idea is I then agree to wear a wrist monitor for a week and give permission for them to analyse my confidential medical records ad infinitum.
Do I benefit personally from this medical attention? The answer, astonishingly, is no. If they discovered from their tests that I had 24 hours to live, I'd be sent home none the wiser as they're concerned about causing me 'undue alarm'. All I get is my travel expenses and the satisfaction of knowing that I'm helping the advance of medical science.
A 'breach of confidentiality' is thankfully considered to be 'very low'. But information and samples will be made available to researchers who are working outside the UK and commercial interests involved in finding new treatments.
And while all of these issues cause me concern, there's something else nagging away at the back of mind. Although it's 20 years since I studied social research methods and I'm now old enough to be included on the Biobank invite list, my memory is sharp enough to realise that the sponsors will never achieve a representative sample of the population. Who, after all, will be prepared or able to give up two hours of their time for intrusive medical tests in an inconvenient location? The testing centre will be full of the idle rich, retired hypochondriacs and a handful of people looking to screw an extra few quid out of the travel expenses.
I'm interested in the statistical jiggery-pokery that will be needed to ensure the validity of the sampling. In fact, I feel a couple of Freedom of Information requests coming on.
Creeping in at the very bottom of the age range, I perhaps have the most to gain from this long-term project, as potentially they'll be able to identify trends that will help in the fight against disabling and life-threatening illnesses. Nevertheless, I've told them to get lost.
They want three tablespoons of my blood, as well as saliva and urine, but that's not the only way in which they're taking the p**s. I'm expected to attend a two-hour appointment at a centre which is inaccessible by public transport from where I live. The idea is I then agree to wear a wrist monitor for a week and give permission for them to analyse my confidential medical records ad infinitum.
Do I benefit personally from this medical attention? The answer, astonishingly, is no. If they discovered from their tests that I had 24 hours to live, I'd be sent home none the wiser as they're concerned about causing me 'undue alarm'. All I get is my travel expenses and the satisfaction of knowing that I'm helping the advance of medical science.
A 'breach of confidentiality' is thankfully considered to be 'very low'. But information and samples will be made available to researchers who are working outside the UK and commercial interests involved in finding new treatments.
And while all of these issues cause me concern, there's something else nagging away at the back of mind. Although it's 20 years since I studied social research methods and I'm now old enough to be included on the Biobank invite list, my memory is sharp enough to realise that the sponsors will never achieve a representative sample of the population. Who, after all, will be prepared or able to give up two hours of their time for intrusive medical tests in an inconvenient location? The testing centre will be full of the idle rich, retired hypochondriacs and a handful of people looking to screw an extra few quid out of the travel expenses.
I'm interested in the statistical jiggery-pokery that will be needed to ensure the validity of the sampling. In fact, I feel a couple of Freedom of Information requests coming on.
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