Last updated Jul 16, 2018
UK Biobank aims to build a major resource that can support a diverse range of research intended to improve the prevention, diagnosis, and treatment of illness and the promotion of health throughout society.
Lifestyle and environmental information, medical history, physical measurements, and biological samples are to be collected from about 500,000 people aged 40-69 at presentation and then, with consent, their health will be followed for many years through medical and other health related records. The biological samples will be stored so that they can be used for a wide range of biochemical and genetic analyses in the future.
Scientists have known for many years that our risks of developing different diseases are due to the complex combination of different factors: our lifestyle and environment; our personal susceptibility (genes); and the play of chance (luck). Because UK Biobank will involve thousands of people who develop any particular disease, it will be able to show more reliably than ever before why some people develop that disease while others do not. This should help to find new ways to prevent death and disability from many different conditions.
UK Biobank will seek active engagement with participants, research users and society in general throughout the lifetime of the resource. Data and samples will only be used for ethically and scientifically approved research consistent with the above purpose. Safeguards will be maintained to ensure the confidentiality of the participants’ data and samples.
The purpose and objectives of the UK Biobank resource remain as originally stated. The main difference is that the recruitment of 500,000 participants has now been completed. The resource has been strengthened in the ways indicated and has been open for research for the past 6 years.
Organisation and Funding
Financial support for the core UK Biobank resource is being provided to UK Biobank Limited, which is a charitable company limited by guarantee, by the Medical Research Council, Wellcome Trust, Department of Health, Scottish Government and North West Regional Development Agency (the Funders).
UK Biobank’s Board of Directors, which is accountable to the Members of the Company (Medical Research Council and Wellcome Trust), will act as charity trustees under UK charity law and company directors under UK company law, and exercise management oversight of UK Biobank.
UK Biobank will serve as the legal custodian of the data and samples, and will operate through a Coordinating Centre hosted by the University of Manchester. It will also allocate some funds through a collaborative agreement with six Regional Collaborating Centres representing more than 20 UK universities, which will be involved through a Steering Committee in the scientific design of the resource.
An independent Ethics and Governance Council will advise the Board and Funders, and publish public reports on the conformance of UK Biobank with this Ethics and Governance Framework and with the interests of participants and the public.
UK Biobank’s structure, as a charitable company limited by guarantee, remains the same.
UK Biobank’s Board members (who are charitable trustees) are the individuals responsible to the members of the company (our funders) and to the participants and the public. The Chairman of the Board, since 2012, is Professor Sir Mike Rawlins and the Chief Executive, since 2006, is Professor Sir Rory Collins. View details of theExecutive Management Team of UK Biobank.
In terms of ethical oversight, we have formal ethical clearance as a Research Tissue Bank from our Research Ethics Committee. This means that as long as a research application meets UK Biobank’s access criteria, then the researcher does not need to apply for separate ethical clearance. The independent UK Biobank Ethics and Governance Council has continued with its oversight role, to ensure that we conform with the Ethics & Governance Framework. Going forward, the role and remit of the Ethics and Governance Council will be undertaken by a sub-committee of the UK Biobank Board. The objective here is to integrate ethical input more closely within UK Biobank’s operational activities whilst preserving the quality of the ethical advice which is provided to UK Biobank. The terms of reference for this new Ethics Sub Committee are attached.
Because of its size, the UK Biobank Co-ordinating Centre (where the resource is managed and participant samples are stored) moved out of the University of Manchester in 2005 and to a separate and secure location on the outskirts of Stockport. Back-up samples are stored in the NIHR National Biosample Centre at Milton Keynes which is run by UK Biocentre Limited, UK Biobank’s trading subsidiary.
An ever increasing number of leading UK academic researchers are involved in UK Biobank through the Steering Committee and other advisory committees (such as the Imaging Working Group) and leading international academic researchers are members of the International Scientific Advisory Board.
We completed the initial recruitment of 500,000 participants on time and on budget. Since then, we have had substantial additional funding – both for our annual maintenance and for specific enhancements – from the Wellcome Trust, the Medical Research Council (MRC), the Department of Health, Cancer Research UK and the British Heart Foundation (BHF). UK Biobank has only been possible with the ongoing support of our funders and participants.