Health research now for the next generation

October 2006: UK Biobank enters the final stages of planning, ready for recruitment in 2007 in Manchester and Oxford, kicking off a four-year recruitment drive for half a million people to be involved in a visionary medical project.

Helping future generations to prevent, diagnose and treat disease

In 1950, Richard Doll pioneered a new way of conducting research. Instead of studying existing data, he gathered information about the smoking habits of 50,000 doctors to see if a pattern would emerge later. Six years on, having followed their health, he announced to the world that smoking caused lung cancer. UK Biobank is part of the prospective tradition that the British headed by Rory Collins, Professor of Medicine and Epidemiology at Oxford, who worked with Sir Richard until his death in 2005.

‘Sir Richard’s original data has been used and followed up for 50 years now, establishing links between smoking and a whole host of diseases’, says Professor Collins. ‘Imagine what researchers could do with a resource ten times bigger than that, with a lot more detail, covering a lot more variables, including blood measurements. That, in a nutshell, is UK Biobank.’

Robots are used to process the millions of blood and urine samples sent to UK Biobank’s laboratories near Manchester

UK Biobank will investigate disabling and deadly diseases by gathering detailed genetic and lifestyle information from half a mil-lion people aged 40–69 and tracking their health over 30 years or more via routine medical records. The aim is to find out when and how the seeds of disease risk – whether genes, lifestyle, environment or an interplay between them – are sown.

The project is based at the University of Manchester but is led by Professor Collins at Oxford University, and draws heavily on Oxford’s world-renowned expertise in epidemiology. Cancer, heart disease and stroke are the big killers, causing more deaths worldwide than anything else, but UK Biobank will also exam-ine dementia, mental illness, joint disease, diabetes, arthritis, Parkinson’s, Alzheimer’s, dental disease and a large number of other debilitating conditions.

Following an extensive pilot, the fi rst wave of recruitment took place in Manchester in March 2007 and the second in Oxford in April 2007. ‘My mother had Alzheimer’s disease’, says Helen, one Oxford participant. ‘I feel that anything that might help find out what causes this terrible disease is a good thing to be involved with.’

Data gathered from participants includes information on current health and lifestyle; measurements like blood pressure, weight, lung function and bone density; and urine and blood samples. Around 15 million samples will eventually be stored for decades in specially designed laboratories near Manchester, at temperatures of about –200°C.

It is the size of the project that gives it power. With 500,000 participants, it is inevitable that thousands will eventually go on to contract one disease or another. When that happens, UK Biobank will allow researchers to go back and examine the genes and lifestyle of the people afflicted with a particular disease and compare them with participants who had not contracted it. That will enable scientists to identify more reliably than ever before why some people develop a specific disease and others do not.

The public health benefits will be many and varied, from providing better information about how to prevent and treat disease to developing ‘personalised medicine’ tailored to a particular individual.

‘There are likely to be many uses for this resource which we can’t even predict now’, says Professor Collins. ‘We don’t yet know what unthought-of techniques might equip scientists to understand dis-ease in the future. Those scientists, who may be in primary school now or not even born, will be able to return to the samples we’re collecting now and use them in ways we can’t even imagine.’

That also means that proper regulation of the research is crucial. Years of work have gone into considering and consulting widely on ethics, consent and privacy issues. Independent ethical governance and stringent confidentiality, anonymity and security protocols are in place. ‘A project like this has to be a force for good, with no negative consequences’, says Professor Collins. ‘We’ve consulted exhaustively to get it right.’

The prospect of helping future generations to prevent, diagnose and treat disease is also what appeals to many participants. ‘I may or may not see direct benefits from this project,’ says Barbara, aged 42, ‘but I have a 3-year-old son and I like the idea that he, and his children, could benefit from medical advances that I played a part in.’