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Sensitive and confidential data

When research data are obtained from people as participants, certain data may be sensitive or confidential. Data confidentiality does not prevent the archiving and sharing of data. Obtaining informed consent for data sharing, anonymising data and controlling access to archived data are effective ways to enable the archiving and ethical sharing of confidential research data. This requires careful planning early in the research.

Researchers may be bound by a duty of confidentiality towards participants. They also need to take the safeguarding of personal data into consideration. It is important to discuss data archiving openly with participants.

Confidential data can be shared ethically if researchers:

• obtain informed consent for data sharing, besides obtaining consent for participation and for use of data in publications
• protect people's identities when necessary, by anonymising data
• decide whether controlling access to all or part of the data may be required

It is important to consider those three measures jointly. A researcher's plans to anonymise data, to remove personal identifiers or to impose access controls to data, through which data confidentiality can be maintained, may be important information for participants to consent to data archiving.

Future use of research data by other researchers by sharing and archiving is a form of data use that needs to be considered in all consent and confidentiality agreements. Researchers should avoid offering to keep confidential what is discussed between the researcher and the participant. Instead, data archiving should be openly discussed with participants, giving them the choice to consent or dissent to data archiving. The UK Data Archive, where Relu research data will be archived, has various ways to control access to confidential or sensitive data, where this is needed.

View detailed guidelines on consent and ethics in data sharing on the Archive web site. If researchers are unsure how best to approach this issue in their research, they can contact Relu-DSS for advice.