How to give your consent

How to give your consent

Roxy Brunton-Sim is the Research Consent lead for the Norwich Biorepository. She oversees the process of obtaining informed, ethical consent from people to donate samples and data that can be used, anonymously, in ethically-approved research studies.

“Informed ethical consent is fundamental for any study using human tissue to help improve and develop patient care.”

Roxy and her colleagues in the consenting team are governed by the NHS and are independent of the research trials. They work closely with clinicians in the NNUH to provide information about research studies to patients.

This may be in the form of information posters or leaflets placed in clinics, or in appointment letters sent out to patients.

After reading this information, if you interested  donating tissue to help research, Roxy or her colleagues will meet with you during your visit to the clinic to talk about your donation, and to answer any questions you might have.

If after this you consent to having your sample taken, you simply complete the consent form. A copy of this form is stored in your patient records, and another is stored securely in the Biorepository’s database. You can also have a copy of your consent form if you wish.

You will also be given a copy of the Participant Information Sheet, with contact details of the Biorepository should you have any questions or wish to withdraw your consent. You can withdraw consent at any time. You don’t need to give a reason and this will not affect your clinical treatment.

If you do consent, your samples and data are stored securely in the Biorepository using a unique identifier. This means that the researcher will receive tissue and data that’s anonymous, and they cannot identify you from it. However, if they find something during the research that would be relevant to your health or treatment, they can alert the Biorepository team. The Biorepository team can then consult the secure database and inform your clinician. This system is known as linked anonymisation (or pseudo anonymisation) and ensures your identity is protected, but still allows the best possible patient care.