We would like to assure participants NIHR BioResource and UK Biobank are separate entities and NIHR BioResource samples and data are not part of the recent incident reported in the news.
NIHR BioResource does not share participant data with researchers unless there is existing explicit permission from participants to do so.
All applications approved by the BioResource undergo a rigorous review process including considerations of appropriate method of data access, the acceptability of the amount of data being requested and risk of identification/re-identification through the data requested. You can find our application form here to view the questions we ask researchers.
Applications to the BioResource are also reviewed by our National Participant Advisory Group, which serves as our participants’ representatives; their review is very important in reaching a final decision regarding approval of applications.
In considering which researchers can access BioResource data and/or biological samples, we also refer to the Government’s guidance regarding restrictions and sanctions , and will only accept applications from countries not listed as being under sanction. When we make data available to researchers, we only provide the minimum data needed to do their research. By default, BioResource shares data in our secure environments, where strict controls are in place before approving the release of data.
We follow best practice for the sharing of data and will always seek to improve processes in line with current standards. We take our responsibility for protecting your data very seriously.
Summary information for all research projects that the BioResource approves and supports can be found on our website. If you have any questions or concerns about how the BioResource handles your data, you can find more information here. Please feel free to also contact us at nbr@bioresource.nihr.ac.uk.