Last updated Jul 12, 2013
An incredible snapshot of the health and lifestyles of 500,000 Britons – including 26,000 people with diabetes and 50,000 with joint disorders, 41,000 teetotallers, and 11,000 heart attack patients – is now available for medical research. And it is all thanks to the generous people who have taken part in UK Biobank.
With more than 1,000 separate pieces of information already available on volunteers aged 40-69 when they joined the project, UK Biobank has amassed one of the most detailed large-scale health resources ever, with the goal of improving the health of future generations.
Importantly, this information will grow as the participants’ stored samples are analysed and their health is followed over many years, building a key resource for research into a wide range of illnesses that cause pain, disability and premature death.
UK Biobank will gain in value for health research, as:
- Results of tests on donated blood, urine and saliva samples, including genetic tests, are included in the resource;
- Changes in participants’ health are recorded via electronic records (eg general practice, hospital statistics, cancer and death registers);
- Results from studies using UK Biobank are put back into the resource for other researchers to use;
- Additional or more detailed information about the participants is added (eg physical activity, diet, work and residential questionnaires and possibly, body scanning), and repeat measurements are undertaken.
Participants were recruited from Scotland, England and Wales over four years (2006-2010), via 22 assessment centres. Measures of height, weight, body fat, hand grip strength, bone density, lung function and blood pressure were taken, along with information about medical histories and lifestyles. Memory, diet, early life factors and psychosocial events (such as how often people see family and friends) were also recorded. The last 100,000 participants also had hearing, fitness and eye tests (creating the biggest eye study ever, in the process).
The resource so far stretches to about 20TB (terabyte) of securely-stored data, the equivalent of 30,000 CDs stacked to a height of about 35 metres. It will grow hugely over the coming years. For example, ten times more information would be added if an exciting plan to do specialised imaging scans in one fifth of all participants gets the go-ahead.
UK Biobank will allow scientists working on health-related research that is in the public interest to access the resource to find out why some people develop particular diseases in mid to later life and others do not. This will pave the way for new treatment and preventive strategies.
The resource is expected to advance research into the causes, prevention and treatment of a large number of chronic, painful and life-threatening illnesses, such as cancer, heart disease, stroke, diabetes, dementia, depression, arthritis, and eye, bone and muscle disorders.
Scientists from the UK and overseas, irrespective of whether they are from academia, industry, charity or are government-funded, will be able to use the resource subject to checks that the research is health-related and in the public interest. Only information that does not identify participants will be provided to researchers.
Applications to use the resource will be made online. Careful checks will be carried out by the UK Biobank team. The process will be overseen by the Access Sub-Committee of the UK Biobank Board. The independent UK Biobank Ethics & Governance Council also has oversight of the system.
An online Data Showcase will allow scientists and the public to see a summary of the information collected so far. Successful applications to use the resource will also be published on the website as they are approved.
“This is without doubt a very exciting day for medical research, not just in the UK but around the world,” said UK Biobank Principal Investigator, Professor Sir Rory Collins. “We are grateful to participants for their trust and support so far. But they have not joined the project to see it remain idle; we all want to see the resource used extensively to bring about benefits to health and wellbeing.”
Professor Dame Sally C. Davies, Chief Medical Officer and Chief Scientific Advisor
Department of Health, said: “UK Biobank is a globally unique resource which places the UK at the forefront of the quest to understand why some people develop life threatening diseases or debilitating conditions. It has huge potential for future generations and will help us understand how our children and our children’s children can live longer, healthier lives.”
UK Biobank is about to undertake repeat measures of 20,000 participants from the Manchester area. Later in the year, it will ask participants to wear an activity monitor for one week. UK Biobank has had almost 400,000 responses to its online follow-up diet questionnaire.
UK Biobank is funded by the Wellcome Trust, Medical Research Council, Department of Health, Scottish Government, Welsh Government and the British Heart Foundation.
UK Biobank has announced that its new Board Chairman is Professor Sir Mike Rawlins, who chairs the National Institute of Health & Clinical Excellence (NICE). He replaces Sir Alan Langlands, Chief Executive of the Higher Education Funding Council for England (HEFCE), and former Chief Executive of the NHS, who stands down after more than eight years of successfully steering the project through its set-up, recruitment and opening phases.