We follow best ethical and legal practice to ensure that all information collected about volunteers is handled in confidence. We utilise a process called ‘pseudo-anonymisation’, which ensures that it is not possible for members of research staff to access both your personal details and experimental results about you.
The diagram below explains what happens to your data and how we secure access to personal information and any lifestyle or medical information that we hold.
- Volunteer personal details are recorded in a database, where you live, your name and contact details, age and some basic lifestyle questions.
- Your sample of blood or saliva is prepared and barcoded, ready to be processed for selection following a research request.
- Both pieces of information are held in different databases accessed by different teams. They are linked via the barcode.
- Researchers will request groups of volunteers who hold the particular gene they are interested in studying.
- People that match that request are then contacted and asked if they would like to participate in that study.