Original URL: http://www.theregister.co.uk/2008/12/04/biobank_uk_participation/

UK ramps up health über-database

We take part (voluntarily) in Biobank UK

By Tony Smith

Posted in Science, 4th December 2008 14:35 GMT

Napoleon called the British a nation of shopkeepers, but we'll be nation of statistics if UK Biobank has its way.

It's a scheme backed by the Government and the NHS, and by major medical NGOs and charities, including the Wellcome Trust and the British Heart Foundation. Its aim is to evaluate the lifestyles of half-a-million adults aged 40 and above, and this reporter is one of them. Today, I took the first step in a project that will monitor my medical history until I no longer have one.

The project's some way from its target - so far, under 230,000 participants have signed up - but it's still sufficient to generate a meaningful statistical model that will help establish links between lifestyle and medical wellbeing.

It's taken a while to get this far. The survey began as a pilot scheme in Manchester back in 2006. The plan is to have the initial data from the 500,000 by 2010.

Many of the factors Biobank will take into account are obvious: smoking, alcohol consumption, sexual history, am I eating enough veg?

Technology fans will be interested to learn that mobile phone usage is also being tracked: how long to I use my phone, what side of my head do I hold it up to and do I use a headset?

That should calm or confirm the fears of the tinfoil hat brigade once and for all.

It won't be sufficient to necessarily claim a direct causal relationship between mobile phone usage and, say, the incidence of brain tumours, but the pattern that will emerge from the numbers will show whether its a contributory factor.

And that's the point: to track as many of the components that make up an adult individual's health as possible to allow, over time, the numbers to be crunched and probed for patterns, giving an insight into the way genes, lifestyle and environmental factors come together to if not determine then certainly nudge in a given direction an individual's long-term health.

While there's plenty of molecular and biochemical data available to reserchers, there's rather less in the way of consistent clinic information. Where this exists, it's usually the result of studies seeking to establish links between specific factors and outcomes. The idea behind Biobank is to provide an overarching data set future studies can tap into without having to limit the scope of the inquiry for practical reasons.

The 90-minute initial "assessment" combines high and low tech. Having signed in, I was issued with a USB Flash drive on which my details were stored, along with the results of stage one of the data gathering process: an on-screen questionnaire and, at the end, memory and reaction-time tests.

The questions probe your medical, sexual and physical development history, even your emotional state. You're even asked if you speed on motorways, though the series of 'we pledge not to spill your beans' messages at the start reassured me my answer will not be passed on to Plod. I won't say whether or not the Police would be interested in the response.

The point here is that the Biobank data will be made available to as wide a diversity of research scientists as require it, its anonymity and integrity guaranteed by the combined independence of the numerous organisations behind the scheme.

Staff even make a point of informing you've they've just disinfected the USB key of your personal data, though I'd have thought a network would have saved them the bother of using the sticks in the first place.

Other initial reassurances include the guarantee the blood and urine samples I would supply at the end of the assessment are no longer mine, and that I won't receive a penny if my bodily fluids yield a cure for cancer.

Being a philanthropic sort of gent, this was not a concern.

Having to undergo the discomfort of donating half-a-dozen large test tubes of blood was a worry, but it, like the rest of the assessment's physical stage, proved straightforward. Blood pressure, weight and height - and hence Body Mass Index - and waist size were measured, while machines probed me to record both the percentage of my body that is made up of fat and my bone density.

As an amateur asthmatic, my lung capacity and breath-strength readings weren't peak but rated 'Good' on the crib sheet I was provided with at the end of the assessment. As I mentioned, my USB key, having been plugged into the PC used by the doctor doing the physical measurements, was ceremonially emptied and taken away.

After a freebie cup of Kenco and three Bourbon biscuits, that was it, and I left with a vague sense of anti-climax. For all the scientific glamour of the project, the assessment itself is entirely prosaic - just data collection.

The question is, will any of this make a difference? To individual participants, probably not. The database will be constructed with 29 years' of a person's medical information, so it will clearly be some time before there are sufficient numbers in there to begin doing serious work with.

Them, with a solid foundation of clincal and other data, researchers will be better informed than before about what they do need to test when examining a potential treatment or possible causal link.

That doesn't mean they'll be right - that's what peer-review journals are for - but it provides a resource on which to begin building and testing hypotheses.