Volunteer confidentiality and anonymity - Additional Information

The Cambridge BioResource has been approved by Cambridgeshire 2 Local Research Ethics Committee. Research Ethics Committees are independent committees convened by the Strategic Health Authority to provide independent advice on the extent to which proposals comply with recognised ethical standards. They offer advice to NHS bodies on research which involve human subjects and their purpose is to protect the dignity, rights, safety and wellbeing of research participants. The Cambridge BioResource is operating according to a research protocol and following procedures for storage and use of volunteers’ information that have all been ethically approved.

When you join the BioResource we ask for some basic personal details such as date of birth, gender, and ethnicity and also for contact details so that we can write to you and invite you to research studies. At the time of joining we also ask volunteers to complete a short lifestyle and health questionnaire. This short questionnaire asks for more detailed information about you, including information such as height, weight, current medications and some questions regarding your family’s medical history. We ask these questions so that we are better able to determine volunteers’ suitability for studies. The completion of this questionnaire is voluntary and volunteers can choose not to answer any questions they are not comfortable with.

In order to protect the identity of our volunteers we use a process known as ‘psuedo-anonymisation’. Pseudo-anonymisation is a process whereby donated samples or data originating from the samples or subject is given a unique identifier or code in order to break the link to the subject. The pseudo-anonymised data is stored separately to the identifiable data.

When a volunteer joins the BioResource they are assigned a unique Study ID which is used to both identify any blood or saliva samples they donate, and to identify their personal records held in the volunteer database. The two sets of data are stored separately on two different secure databases and access to these data sets is strictly restricted to the appropriate team of staff. The Research team, comprised of researchers and senior laboratory staff, only have access to the laboratory data (which includes the genetic data) and the Clinical team, comprised of the study coordinator, research nurses and administrators, only have access to the personal data (which includes contact details). No staff member has access to both sets of information. In this way, researchers using the samples and collecting genetic data do not know who the samples belong to and the volunteer facing staff who have access to personal details do not have access to any genetic information about the samples, but the link is retained so that specific volunteers can be recalled and invited to donate further samples for research and participate in future research studies as necessary.

The servers on which the databases are stored are maintained by the University of Cambridge.

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