UK Biobank, a visionary project to improve the health of future generations, has opened. After ten years of detailed planning and development, the pioneering resource is now available for scientists from around the world to help tackle a wide range of illnesses that cause disability and premature death
UK Biobank provides an incredible snapshot of the health and lifestyles of 500,000 Britons – including 26,000 people with diabetes, 50,000 with joint disorders, 41,000 teetotallers, and 11,000 heart attack patients. It hopes to provide a key resource for health research for decades to come.
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 long-term goal of improving global health.
Importantly, this information will grow as the participants’ stored samples are analysed and their health is followed over many years.
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 (e.g. 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 (e.g. physical activity, diet, work and residential history and possibly, body imaging), and repeat measurements are undertaken.
Participants were recruited from Scotland, England and Wales over four years (2006-2010), via 22 assessment centres (Table 1). 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.
UK Biobank is based in Stockport, where its state of the art freezer facility is located. Participants’ samples were delivered there overnight during the collection period, and sub-divided, creating millions of ‘aliquots’ to allow for their efficient thawing and use over many years. A robotics-driven, automated system ensures their accurate storage and retrieval.
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. As a prospective study, it will accrue diseases over many years, as its participants age.
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.
Researchers have to register with UK Biobank before they submit a preliminary and a main application. The preliminary application allows UK Biobank to provide a quote for the cost of administering the provision of data and/or samples, or sample analysis and provision of the results.
Key points about access include:
- The resource is open access, although scientists will have to register to use it.
- Approved scientists from around the world will be able to use it for health-related research that is in the public good.
- UK Biobank has built and owns the resource, but there is no preferential access and no requirement for scientists to collaborate with the scientific team that has developed it.
- Stringent measures are in place to ensure that participants are not identified.
- After they have published results based on the resource, scientists will be obliged to share them with UK Biobank so that advances can be built on by others.
Ensuring the resource is used in the most effective way over many years will be a challenge, especially given the depletable nature of the samples. UK Biobank is asking scientists to consider how they might make the most of the resource. This could be done by scientists forming consortia, UK Biobank suggests, which would help with planning, but might also make it easier for researchers to gain funding.
Crucially, only information that does not identify participants will be provided to scientists for research purposes. Participants’ anonymity with regard to research is one of the key components of the study.
Applications to use the resource will be made online, via the UK Biobank website (www.ukbiobank.ac.uk). Careful checks will be carried out by the UK Biobank team, to ensure scientists meet the access criteria. The process will be overseen by the Access Sub-Committee of the UK Biobank Board and by the independent UK Biobank Ethics & Governance Council also has oversight of the system.
An online Data Showcase allows scientists and the public to see a summary of the information collected so far (http://biobank.ctsu.ox.ac.uk/crystal/). Successful applications to use the resource will also be published on the website as they are approved.
UK Biobank Principal Investigator, Professor Sir Rory Collins, said a common misunderstanding was that researchers would need to collaborate with the UK Biobank team. “This is not the case,” he said. “We all want to see the resource used extensively to bring about benefits to health and wellbeing. If there are researchers who think the resource can help with their work, I hope they will think about how they can use us.”
He acknowledged the debt UK Biobank owed to its participants – one in 50 of the eligible UK population. “We are grateful to them for their trust and support so far. But we know they have not joined the project to see it remain idle; so it is now up to the scientific community to find exciting ways to use the resource.”
Professor Dame Sally C. Davies, Chief Medical Officer and Chief Scientific Advisor, Department of Health, which has helped fund UK Biobank, 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 looks to the future. The characterisation of participants has continued via an online diet questionnaire which has collected around 400,000 responses. Other questionnaires are being developed, including work histories and residence. Participants will be asked to wear a seven-day movement monitor later this year, and there are proposals to undertake key assaying of all the blood samples, and possibly imaging of 100,000 participants. UK Biobank will also undertake repeat measures of 20,000 participants from the Manchester area this year.
In 2002, the Wellcome Trust, Medical Research Council (MRC), Department of Health (DH) and the Scottish Government took a bold step in developing a partnership to create UK Biobank, a prospective, long-term study, to improve health. The goal was to build a resource that would be open to all bona fide health researchers anywhere in the world. It would allow them to disentangle the complex relationship between lifestyle, environment and genetic factors in the causes and treatment of a wide range of diseases that affect people in mid to later life. The MRC and the Wellcome Trust provided the initial investments of £28 million each, with the DH, Scottish Government and the Northwest Regional Development Agency committing an extra £5.5 million between them.
On-going funding of £25 million over the next five years was agreed in 2010, split between the MRC and the Wellcome Trust charity. This provides for upkeep, repeat measurements on a proportion of participants (to assess variation over time), and developing linkage to participants’ medical and other records. This was in addition to £6 million provided during recruitment by the MRC, Wellcome Trust and the DH to cover enhancements to the collection process.
Scientists from a large number of UK universities have provided their advice and skills, and sit on the UK Biobank steering committee and other expert advisory groups. An International Scientific Advisory Board (ISAB) meets annually to provide further guidance. UK Biobank has used industrial-based techniques to build an internationally important scientific resource with the goal of improving the health of future generations. But it acknowledges the key role and support offered by half a million participants who have willingly got involved and supported this scientific adventure, possibly for the rest of their lives. Its message to the scientific community is ‘use me’.
UK Biobank’s overriding objective is to encourage the extensive and appropriate use of the Resource for such research. The procedures and processes that have been applied to access the Resource derive from the following key principles:
- UK Biobank will seek active engagement with participants, researchers and society in general throughout the Resource’s lifetime (which is intended to be some decades), in particular regarding the research that is being conducted on it and the research findings that emerge.
- All applications to use the Resource will be checked to ensure that they are consistent with the Access Procedures, Withdrawal Protocol, the Ethics & Governance Framework, and the consent that was provided by the participants, and that they have any relevant ethics approval that is required.
- The Resource is available to all bona fide researchers for all types of health-related research that is in the public interest, without preferential or exclusive access for any person. All researchers, whether in universities, charities, government agencies or commercial companies, and whether based in the UK or abroad, will be subject to the same application process and approval criteria.
- Access to the biological samples that are limited and depletable will be carefully controlled and coordinated. The quantity of sample that is required will be judged against the potential benefits of the research project, with advice from appropriate experts when required.
- Safeguards will be maintained to ensure the anonymity and confidentiality of participants’ data and samples. Researchers will enter a legal agreement not to make any attempt to identify participants, and the data and/or samples provided by UK Biobank to researchers will not identify any particular participant (i.e. they will be “anonymised”).
- Applicants will be expected to pay for access to the Resource on a cost-recovery basis, with a fixed charge for managing the application review process and a variable charge depending on how many samples, tests and/or data are required for the approved research project.
- UK Biobank will remain the owner of the database and samples, but will have no financial claim over any inventions that are developed by researchers using the Resource (unless they are used to restrict health-related research or access to health-care unreasonably).
- All users will be required to publish their findings and return their results to UK Biobank so that they are available for other researchers to use for health-related research that is in the public interest.