Obtaining research data from human participants places ethical and legal obligations on researchers. The need to respect confidentiality and privacy can seem to conflict with funders' expectations that data will be shared wherever possible, but with careful planning, it is possible to share research data from human participants. A combination of gaining consent for sharing, de-identifying or anonymising personal data, and controlling access, can ensure long term access to sensitive data.
Relevant to these issues is the General Data Protection Regulation (GDPR), which came in to force across Europe on 25th May 2018. Replacing the UK Data Protection Act 1998, GDPR strengthens the rights of research participants with regard to their personal data.
Our guide listed below, GDPR – How does it affect Research Data Management and data sharing? highlights the key issues for researchers and draws together useful resources and contacts. See also the UK Data Service GDPR Research and Archiving FAQs listed below.