Confidentiality

You can download a copy of the NIHR BioResource Privacy Notice. This explains what we do with the information we hold about you, how you can request access to this personal data, and other data rights.

More briefly:

We follow best ethical and legal practice to ensure that all information collected about volunteers is handled in confidence.

When I join how will you keep my data secure?

  •  Your personal data is kept separate from data relating to your sample.
  • The two sets of data are stored on two different secure databases and access to these data sets is strictly restricted to the appropriate staff.
  • This process is called ‘De-identify’, to ensure you remain anonymous to researchers.

Who has access to my data?

Your personal data: This includes your name and contact details in order for us to contact you about participating in further studies. This information can only be accessed by:

  • NIHR BioResource administrators and coordinators, who are responsible for sending newsletters, study invites etc
  • NIHR BioResource clinical staff, if arranging a study

 Your genetic data: this is information from your samples you have donated.  This can only be accessed by:

  • Members of laboratory staff
  • Researchers and staff from the study team
  • Researchers external to the NIHR BioResource if they have an approved request to access genetic information

This system ensures that no member of staff has access to both your personal data and any genetic data. The NIHR BioResource does not sell your data to third parties.

What happens to my data when I’m invited to a study?

If we require further samples or information for a study, we will send you an invitation to see if you’d like to participate. We will always ask for your consent, each time you take part in a recall study.

Laboratory data is not used or made available for any purpose other than for research, and you will never be identified in any report or publication.

If you have any further questions regarding the important issues of confidentiality and anonymity, please contact us.

Find out more

If you would like to find out further information about the NIHR BioResource, please click the link below, to find the person to direct your enquiries to.