Poor health, rich pickings

Blood tests Image copyright SPL
Image caption The next generation of medicines will be targeted at genetic characteristics

You're about to be set a challenge - are you willing to be a guinea pig, taking part in medical research? It involves handing over a urine and blood sample.

Then are you willing to subject yourself to a few questions about your behaviour, asking about your food intake, exercise, mental health, and above all your family health history?

And how about taking a trial drug, one of a new generation of medicines? It ought to be safe, but hasn't yet been approved for use within the NHS.

If it works, a large pharmaceutical corporation is on course to make humongous profits.

Put it another way: what would it take to persuade you to take part?

And what would it take to persuade the whole of Scotland to do so?

Targeted drugs

These are questions being asked at a conference in Edinburgh today by medical researchers. They know it won't be easy to persuade people to join in. But they're convinced that there's a compelling case to be made.

That case is that the next generation of medicines will cease to be broad-brush response to symptoms, and will become more targeted at your genetic characteristics. Despite the same symptoms, you could get different drugs from the person in the hospital bed next to you.

And if your genetic profile shows you have particularly high susceptibility to an illness or condition, you may get one of these new drugs to avoid you getting the symptoms and being in hospital at all.

To get to these drugs, researchers need giant genetic databases, from which common patterns of genetic markers can be linked to medical conditions, and can be traced through several generations.

Some such tissue libraries are being put together on a modest scale.

Scotland already has one of the better trial bases from more than 25,000 people, who responded to requests from their family doctors.

It's called Generation Scotland, and while part of it is a random sample, much of it is people with specific conditions that interest researchers, and one portion is made up of what you might call pure-bred Scots, with four grandparents born in the country.

Static Scots

But to achieve the big breakthroughs, medical researchers are interested in far more than a few tens of thousands. Instead, a country of, say, five million people, would be just about ideal.

And that's just one of the reasons why Scotland is attractive for such a grand project. It is also explained by the country having a world-class medical research base in universities and increasingly in its life science companies.

It has world-class medical records, and a population that is relatively static - that is, there's not been much migration and mixing of genes compared with other developed nations.

And yes, there's another big attraction in Scotland. Its people suffer from notoriously bad health, and not only those brought on by life choices, risky behaviours and the deep fat fryer.

Privacy on trial

The case is being led by Professor Anne Glover, chief scientific adviser to the Scottish government. She's already presented the case in private to Alex Salmond's Council of Economic Advisers, stressing that clinical trials have benefits for those who take part, even those who are taking the neutral placebos, because participants tend to get better one-to-one attention and a sense of involvement in their treatment. And she's stressing there are big opportunities for the economy.

But there are clearly problems, such as privacy. The samples can be rendered anonymous. But can the public be confident the source cannot be traced back?

And what of the tell-tale genetic markers that suggest people have a predisposition for which they should prepare themselves? What role should privacy have there?

Or what could health and life insurers do with this information?

Legitimate concerns, and ones that the research community will have to allay.

What, then, about the people who benefit most obviously from this?

What would Big Pharma companies be willing to pay for such a world-class research resource, when it looks likely to provide them with a gigantic saving of money and time in getting to those new, gene-seeking drugs?

Payback time

That's up for negotiation. Professor Glover suggests they should be expected to provide resulting drugs to Scots for free. Given the cost of medicines in the NHS now, and the expected spiralling cost of this new generation, that could turn out to be a significant payback.

And what about the commitment to bring research activity into Scotland, to be where the research resource is and to build up the life science industry? Could that be a made a condition for use of such a national databank?

Yes, the rewards could be considerable. Scotland already has more than 30,000 people employed in the life sciences sector, and Scottish Enterprise claims it's worth more than £3bn annually.

The size of the clinical trials business is colossal, at around £30bn, and rising at 10% per year as the industry tackles this new "translational" generation of medicines.

Would a larger share of that persuade you to part with a blood or urine sample, as if a national patriotic duty? An entire country dedicated to the better understanding of science and medicine? Or merely a bunch of gullible and exploited guinea pigs?

Viking blood

It's a debate that's already raged in Iceland, which has about as genetically homogeneous a bloodline as any country, but with fewer than 300,000, it's clearly on a much smaller scale.

A decade ago, Iceland led the way in compiling the database, but it presumed consent - your tissue would be used unless you opted out.

And it handed the rights to sell this on to the pharmaceutical industry to a private monopoly.

It failed to win the full trust of doctors, and that was passed on to their patients. It left lessons from which Scotland could learn.

When explained the right way, the limited British evidence so far is that members of the public can be persuaded to participate. And in those projects, Scots have proven more than twice as willing to participate as their southern neighbours. Why might that be?