Obligations when sharing data

Research ethics review

In research with people there may be a perceived tension between data sharing and data protection. Research Ethics Committees (RECs) can play a role in advising researchers how their data can be shared and made available for reuse while upholding data protection and research ethics principles.

The role of RECs is to protect the safety, rights and well-being of research participants and to promote ethically sound research. Among other duties, this involves ensuring that research complies with the Data Protection Act 2018 regarding the use of personal information collected in research.

RECs can play a mediating role in reconciling data sharing and data protection, so make sure that your institution's ethical review procedures take data sharing and data publishing into consideration:

• Many research funders and journals expect or require data sharing (data to be made available in an archive or repository)
• Ethical review forms should ask whether there are plans for future data sharing
• Ethical review board should consult the data management plan
• Consent forms used should allow for data sharing, whilst also protecting the confidentiality of participants; even sensitive data can be shared if suitable procedures and precautions are taken, as is done at major data centres
• Most research data obtained from participants can be successfully shared without breaching confidentiality
• It is important to distinguish between personal data and research data in general
• Data protection laws only apply to personal data, but they do not apply to anonymised data
• Identifiable information may be excluded from data sharing
• A combination of gaining consent for data sharing, anonymising data and controlling access to data can enable the ethical and legal sharing of data

RECs play a critical role by providing information to researchers at the consent and planning stages on how to share data ethically.

Getting advice from the UK Data Service

Contact us for advice when unsure how to address the sharing of research data as part of an ethical review process, or if a conflict exists between the need to archive data and an REC's recommendations on data management.