Consent for data sharing

The importance of informed consent

Informed consent is an ethical requirement for research conducted with people, and must be considered and implemented throughout the research lifecycle, from planning to publication to sharing.

Participants need to participate voluntarily in research, and understand what the research will involve, what data will be collected and how these data will be used, especially if they may reveal identities. Informed consent is an explicit requirement for any interventional procedures, such as medical research.

Failure to properly address issues of informed consent may restrict the opportunities for initial collection and subsequent use of data

Overview

It is important to distinguish consent for the processing of personal information from other consent processes or requirements. Consent can also be used as a legal basis for the processing of personal data.

One way to achieve this in practice is for researchers to indicate clearly in a consent form where the participant’s consent is being asked for processing their personal data and where consent is being asked for taking part in the research, for use of the collected information, etc. Be specific and granular so that you get separate consent for separate things.

Further information:

FAQs on the GDPR (PDF)

Participant information about archiving (PDF)

Model consent form (Word)

Special considerations when gaining consent (Word)

Example information sheet (PDF)

Survey consent statement (Word)

Example survey information letter (PDF)

ESRC Research Ethics Framework