With the contribution of the participants, UK Biobank has built a Resource for the scientific community to conduct health-related research that is in the public interest. When it is reviewing applications, UK Biobank may ask for further information from applicants about the aims of their proposed research or for guidance from relevant experts (e.g. scientific, legal, ethics). UK Biobank will need to be satisfied that the research is consistent with its Ethics & Governance Framework and the participant consent and is in the public interest. In addition, it will require scientific justification for all studies that would require re-contact with participants (since this places extra demands on participants) or access to samples of blood, urine and/or saliva (since these are depletable and so may run out). UK Biobank does not otherwise intend to judge the scientific value of research that is done using the Resource and will not take responsibility for reports on research that uses it.

The UK Biobank Resource has been established for health-related research that is in the public interest. Any attempts to use it for other purposes will be resisted. So, for example, insurance companies and employers will not be allowed to access the Resource to look at information, samples or test results for any identifiable participants. Nor will UK Biobank allow access by the police, security services or other law enforcement agencies, unless it is forced to do so by the courts. UK Biobank is prepared to take all necessary actions, including (where appropriate) recourse to legal proceedings, in order to prevent such attempted access.

Previous research into the effects of smoking saves many millions of lives around the world every year. The UK Biobank Resource is well placed to provide more health information to tackle smoking-related diseases. Researchers using the Resource will have to show that they are bona fide health research scientists and that their work is for the public good. It is virtually impossible to see that an application by the tobacco industry to use the Resource would fulfil these requirements and be approved. Likewise applications by researchers funded by the tobacco industry (directly or indirectly) would be similarly unlikely to be approved. (In addition to the tobacco industry, there may be other sources of research applications not considered acceptable because their activities are not in the public interest.)

Certain types of research applications to UK Biobank may raise potential concerns. All applications to use the Resource will be the subject of careful review by the UK Biobank Coordinating Centre under the direction of the Principal Investigator. Advice may be sought on any proposal from various experts (including scientists, ethicists, lawyers) and from UK Biobank’s Steering Committee. In particular, any application that is considered potentially contentious will be the subject of close scrutiny and drawn to the attention of the Access Sub-Committee of UK Biobank’s Board and the independent Ethics & Governance Council. UK Biobank may also seek the views of participants and the public on particular issues by putting information on its website or by promoting discussion within the media. Summaries of all approved projects will be published on the UK Biobank website so that participants and the public can see the uses to which the Resource is being put.

UK Biobank does not intend to seek a share of income generated from research that involves use of the Resource (although this policy will be kept under review to ensure that large profits are not being generated without an appropriate benefit for UK Biobank). Research using the Resource is not expected to lead directly to patentable inventions that will generate significant income. Indeed, patentable inventions would typically be the result of research that derived from a variety of sources (rather than from use of the UK Biobank Resource alone), so obtaining a share of income would be difficult and costly to enforce. It is also considered likely that seeking to share in income from inventions based on research using the Resource would prevent it from being used as widely as possible to help improve public health (including by commercial organisations). UK Biobank will, however, reserve the right to take action when patents are generated as a result of using the Resource that hold up other research or are unreasonably restrictive in other ways.

UK Biobank has carefully considered a variety of charging models and decided to adopt an approach which covers its costs for administering access (but not the cost of setting up the Resource). There will be two components to the charge that is made to researchers: a fixed component of £250 towards the cost of managing the application review, and a variable component which will depend on how many samples, tests and/or data fields are required for the research project. This straightforward charging mechanism should be fast, fair and transparent. UK Biobank does not intend to differentiate between academic and commercial applications in its charges to use the Resource (although this policy will be kept under review).

UK Biobank aims to encourage the widest possible use of the Resource to help develop improvements in the treatment and prevention of many different diseases. For this reason, information provided to participants before they consented to take part explained that bona fide researchers in the pharmaceutical industry and other commercial organisations would be able to use the Resource for health-related research that is in the public interest. All researchers will be contractually obliged to put their data and findings back into the Resource so that other scientists can use them. For example, a pharmaceutical company may be prepared to fund expensive analyses of the biological samples in the Resource in order to help it with the development of new treatments. If it does, then the data that these analyses generate will become available in the Resource for other scientists to use for their own health-related research.

As indicated during the consent process, bona fide researchers working in countries around the world will be able to apply to use the Resource for all types of health-related research that is in the public interest. UK Biobank aims to encourage the widest possible use of the Resource to help develop improvements in the treatment and prevention of many different diseases. Restricting its use to UK researchers would prevent many other good scientists from using the data and samples to improve public health. Scientists from overseas may also “add value” to the Resource by funding analyses of the biological samples which will then be available for UK scientists to use for their own health-related research in the public interest.

UK Biobank will allow researchers only a limited amount of time to analyse their findings based on the Resource (e.g. after they receive results from measurements made in biological samples) and to report them publicly before making the data available for other scientists to use. It will encourage scientists to work together, particularly with regard to research that requires the use of samples, and may initiate contact between scientists working on similar research projects. Competition between scientists can, however, speed up the research process and make findings available publicly more quickly. So, in some circumstances, UK Biobank may provide the same data to a number of scientists at about the same time, with a view to those researchers competing against (as well as collaborating with) each other.

The blood, urine and saliva samples available from each participant are limited, and could run out. Consequently, UK Biobank will carefully review requests to use any samples, with advice from relevant and impartial experts (e.g. scientific, legal, ethics) as required. It will encourage collaboration between research groups in order to increase the efficient use of the samples and, where appropriate, may initiate contact between scientists working on similar research projects. The quantity of any samples that are required for a particular research project will be judged against its potential benefits. When possible, UK Biobank will undertake (or arrange for) the analysis of samples itself, and provide the results (rather than samples) to the researchers. After the research project has been completed, other scientists will be able to benefit from access to the data that have been generated by these assays.

As indicated during the consent process, UK Biobank may contact participants again to seek new information or to ask whether health researchers can contact them to discuss possible involvement in a study that requires new information. Consent will also be sought for any new uses of the Resource that do not fall within the existing consent. UK Biobank intends to restrict the level of re-contact with participants (so that they are not approached too often), and will make contacts on behalf of any researchers (so that the identity of participants is protected). Separate ethics approval will be required for such re-contact and the advice of the Ethics & Governance Council will also be sought. Participants are under no obligation to provide further information and, if they prefer, can request no further contact with UK Biobank.

UK Biobank’s Data Showcase will be available online shortly. It will allow scientists and members of the public to view the valuable information that has been collected to help improve the health of future generations. All the information will be anonymised. This means that it will not be possible to identify participants from the data provided.

The Data Showcase will provide summary information only. This is information about what items of data are available and on their average values or distributions among all the participants. It will not include sufficiently detailed data to allow scientists to do research without registering first, and going through the proper review process and having their application approved. Furthermore, UK Biobank may decide not to show summary information on the website for some types of sensitive data (e.g. on numbers of sexual partners), but may instead only provide this information to approved researchers when it is needed.

Each person who consented to join UK Biobank received a clear assurance that all of their personal information would be held in strict confidence. UK Biobank will use a wide variety of measures to ensure the security of data in the Resource. Information provided by UK Biobank to any researcher will not identify any particular participant, and additional steps will be taken to protect the identity of individuals with rare illnesses. UK Biobank believes the risks of inadvertent identification of participants by Resource users are extremely small. Before researchers are provided with data and samples, they will also have to enter a legal agreement not to make any attempt to identify participants.

Between 2006 and 2010, UK Biobank recruited more than 500,000 people aged 40-69 years. It ran in total 22 assessment centres in Scotland, Wales and England: Edinburgh, Glasgow, Newcastle-upon-Tyne, Middlesbrough, Leeds, Bury, Manchester, Altrincham, Liverpool, Sheffield, Nottingham, Stoke-on-Trent, Birmingham, Oxford, Bristol, Reading, central London, Hounslow, Croydon, Cardiff, Swansea and Wrexham. A pilot study was undertaken in Altrincham in 2006.

UK Biobank’s Principal Investigator (PI) is Rory Collins, BHF Professor of Medicine at Oxford University. Professor Collins is UK Biobank’s Chief Executive Officer. He is also the co-director of Oxford University’s Clinical Trial Service Unit (CTSU), which is a world leader in running large studies to identify the causes and to improve the prevention and treatments of cancer and heart disease.  Rory was knighted in the 2011 New Year’s Honours for Services to Science. For further details of UK Biobank’s Executive Team, please click here.

UK Biobank will help scientists better understand a wide range of chronic, painful and life-threatening diseases that typically strike from middle age. This includes illnesses like cancer, heart disease, stroke, diabetes, arthritis, osteoporosis, Alzheimer’s disease and other forms of dementia, oral and intestinal illnesses, eye disorders and depression. UK Biobank is the most detailed large-scale study of its kind that has ever been undertaken.

UK Biobank has been primarily funded by the Wellcome Trust, the Medical Research Council and the Department of Health, with additional funding from the Scottish Government, Welsh Government, Northwest Regional Development Agency and the British Heart Foundation. It is supported by the NHS, a wide range of health-related charities and organisations such as the Royal College of General Practitioners.

You are free to withdraw at any time from the study without giving us a reason. You are welcome to discuss concerns with us at any time, and the various options you have for withdrawal (which are included in the Participant Information Leaflet).

You can obtain a withdrawal form by contacting the UK Biobank Participant Resource Centre on 0800 0 276 276 (8am-7pm Monday-Saturday) or by writing to: UK Biobank, 1-2 Spectrum Way, Adswood, Stockport, SK3 0SA, or by contacting UK Biobank via its website feedback form.

UK Biobank will be most valuable if few people withdraw from it. Participants can withdraw at one of three levels:

No further contact

This means that UK Biobank would no longer contact the participant directly but would have permission to retain and use information and samples provided previously and to obtain and use further information from health records. This level of withdrawal helps scientists most because it leaves in tact the resources that will allow them to study disease with the goal of improving the health of future generations.

No further access

This means that UK Biobank would no longer contact the participant or obtain further information from health records in the future, but still has permission to use the information and samples provided previously.

No further use

In addition to no longer contacting the participant or obtaining further information, any information and samples collected previously would no longer be available to researchers. UK Biobank would destroy samples (although it may not be possible to trace all distributed sample remnants) and would only hold information for archival audit purposes. Such a withdrawal would prevent information about the participant from contributing to further research, but it would not be possible to remove data from research that had already taken place.

You can contact UK Biobank in a number of ways:

• The UK Biobank free phone Participant Resource Centre is open Monday-Saturday, 8am-7pm on 0800 0 276 276. Calls from mobile phones or from overseas may be charged.
• You can write to UK Biobank at:
  1-2 Spectrum Way
  Adswood
  Stockport
  SK3 0SA
• You can contact UK Biobank by its website feedback form.

We are sorry that you cannot find the answer to your question. Please feel free to contact UK Biobank via the website feedback form or call our Participant Resource Centre on 0800 0 276 276 (8am-7pm Monday – Saturday). You can write to us at:
UK Biobank
1-2 Spectrum Way
Adswood
Stockport
SK3 0SA