CONSENT, CONFIDENTIALITY AND ETHICS IN DATA SHARING

Research with people as participants usually requires obtaining their informed consent to participate and for use of the information collected about them by the primary researcher. Consent must also take into account any future possible uses of data, including the sharing and archiving of research data. Without this latter consent, opportunities for sharing research data with other researchers will be jeopardised.

Good research practice and sharing and storage of data are essentially informed by:

• a researcher's ethical obligations
• relevant legislation

Are my data confidential?

Research with people may or may not include confidential or sensitive information. Not all material collected is confidential, even less is personal or sensitive, see defining confidential, sensitive and personal data. Sharing or archiving research data need not compromise assurances of confidentiality.

Before embarking on data collection, as a standard part of ethical review by a Research Ethics Committee (REC), and in order to enable the ethical sharing of confidential data, researchers should consider:

• how to gain informed consent for data sharing and future storage
• how, where necessary, they will protect identities through anonymising research data, aggregation and other tools
• whether access restrictions to all or part of data are necessary
• how personal or sensitive data should be securely stored

For advice on how to address the sharing and archiving of research data as part of the ethical review, or if conflicts exist between the need to archive data and the REC's guidelines on data management, researchers should consult the information on REC and data sharing and contact acquisitions@esds.ac.uk.