Collecting, using and sharing data in research with people requires taking into consideration the legal landscape and expected ethical standards for research.
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 1998 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:
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.