NIHR BioResource would like to assure our volunteer participants that personal (e.g. name, date of birth), clinical (e.g. medication, medical information) and genetic data (e.g. part or all genetic make-up) on its participants has not been, and will not be, shared with insurance companies, in line with the UK government’s ‘Code on genetic testing and insurance’. The Code commits insurance companies to not ask for, or consider, the result of any predictive tests obtained through scientific research.
Where we receive applications for access to de-identified data, a rigorous review process is undertaken. Applicants must demonstrate scientific justification for their proposal and outline clear consideration of the likely benefit to patients and inclusion of public and patient representatives in the study design. Applications to the BioResource are also reviewed by our National Participant Advisory Group; their review is very important in reaching a final decision regarding the approval of applications.
We operate on a cost recovery basis when working with industry and do not sell data to make a profit.
Summary information for all projects that the BioResource approves and supports can be found on our website. We are also rolling-out a Participant Portal where individual participants can see how their samples and data have been used in health research.
If you have any questions or concerns about how the BioResource handles your data, you can find more information on our Governance and Ethics webpage. You can also contact us at firstname.lastname@example.org.
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