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 to 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.