Will my details be kept confidential?
Yes, absolutely. This is very important to us. Best ethical and legal practice will be followed to ensure that all information collected about you will be handled in confidence.
Samples
Your samples will be labelled with a unique study number (not your name) before being stored. Researchers using your sample will not know your name.
Health data
To find your health data in the NHS system, we will send some of your basic details (like your NHS number) to NHS Digital, which is part of the NHS. They will only use these details to find your health data, and then they will send the data to us. When we get your health data from NHS Digital or your local hospital or GP, we will store it securely. Information from your health records will be linked to your unique study number, and stored in a separate place to your identifiable details (like your name, NHS number, and contact details). Researchers will be able to see your health data and link it to your genetic data, but they won't know your name.
Genetic data
Genetic information (e.g. from your saliva sample) will be linked to your unique study number and some researchers will be able to see it alongside your health data, but they won't know your name or other identifiable details.
Only the Chief Investigator of the study would be able to link information about your genetics and health with your name.
Please also see FAQs
