When you became a participant many years ago, you generously agreed to:
- allow your health to be followed for many years through routine medical and other health-related records
- have your samples and health-related information stored by UK Biobank and used in an anonymised form by researchers for many years
- be re-contacted (to answer some more questions and/or to attend another assessment visit, for example, though this is optional)
In return, we agreed to protect your confidentiality and make your data available for ground-breaking health research for the benefit of future generations.
You can find much more detail about the agreement in the original consent form and participant information leaflet.
Participant privacy notice
Find out more about how we collect, share and use the personal information about you which forms the UK Biobank resource.
Who can access your data?
Your data is shared only with approved researchers for health-related research in the public interest. The researchers can be from academic, charity, government or commercial organisations.
Protecting your confidentiality
We know that information about your health and lifestyle is personal and private to you. We made a commitment when you joined the study to protect your confidentiality.
‘No feedback’ approach
You joined UK Biobank with the understanding that it is not intended to change directly what happens to the people who take part. In particular, the initial assessment or imaging visit is not a ‘health check’.
Apart from providing you with the results of some standard measurements made during a visit, none of your results are given to you or your doctors (even if the results do not seem to be normal).
This is because such feedback outside of the normal clinical setting is of questionable value, and might even be harmful (for example, causing undue alarm and having potentially adverse effects on insurance status), especially when given without prior counselling or support.
We collect your data for research. The data is not assessed by a doctor, and UK Biobank staff are not able to interpret what the data means for your health.
Feedback and the imaging project
If you’re having scans as part of the imaging study, and the radiographer does happen to notice a potentially serious abnormality, they will refer the scans after your visit to a specialist doctor (radiologist) for review.
If the radiologist agrees that the abnormality is potentially serious (regardless of whether or not it might be treatable), we will write to you and your GP, usually within a few weeks of your visit.
Withdrawal
As explained when you joined UK Biobank, and in our privacy notice, you are free to withdraw at any time from the study without giving us a reason. If you are thinking about withdrawing, we would welcome the opportunity to discuss your concerns before you make a decision – find out how to contact us.
If you have decided you would like to withdraw from UK Biobank, there are three possible routes:
- No further contact – UK Biobank would no longer contact you directly but will retain and use information and samples provided previously, and obtain and use further information from health records.
- No further access – UK Biobank will not contact you again or obtain any further information about you, but researchers can still use the information and samples you provided previously.
- No further use – UK Biobank will not contact you again and will destroy all information and samples you provided previously so these will no longer be available to researchers.
The number of participants who have withdrawn is very small. We hope that you will continue to participate in UK Biobank for many years to come.
More information
This privacy notice explains to our participants how we collect, share and use the personal information which forms the UK Biobank resource.
Read the UK Biobank privacy policy for personal information anyone has shared with UK Biobank for purposes such as registering for an event, giving us feedback, or sending us a message through social media.
Being able to follow your health over many years is critical to the value of UK Biobank. It is one of the aspects which set our data apart from many other studies.
