Your data

Confidentiality

Personal Details

Best ethical and legal practice will be followed to ensure that all information collected about you is handled safely. Your information will be kept confidential, and your samples and data will be labelled with a unique study code, not your name, to protect your identity.

Researchers using your information from your spit sample or health information will never know your name or personal details that could be used to identify you.

Health Information

To access your health information in the NHS system, we will share your basic details (such as your NHS number) with the NHS securely. The NHS will use these details to locate your health information and send it back to us. Once we receive your health information, we will store it securely.

Your health information will be linked to your unique study code and is kept separate from your identifiable information (such as your name and date of birth).

Genetic Data

We use the spit sample you give us to get your genetic information. This including a process called DNA sequencing.

Genetic information from your spit sample will be linked to your unique study code and some researchers will be able to see it alongside your health information, 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. This is so that if a participant wishes to withdraw or exit the study, their information can be identified and removed.

Data Security

Your data is stored in a ‘Trusted Research Environment’, which is a highly secure, ISO27001 certified platform that researchers can use to look at information from Genes & Health volunteers. Researchers can only work inside this environment, so that we do not need to send them any health and genetic data. Researchers can download a summary of their results but not information from individual volunteers.