Protecting the privacy of research subjects is an essential part of a research process and data management. The European Union General Data Protection Regulation (GDPR), due to be enforced in May 2018, sets new requirements on how potential research participants should be informed, how consent should be obtained and what should be documented and reported regarding processing of personal data.
If you have questions related to data protection issues, FSD’s Data Management Guidelines are a good starting point.
The guidelines are available online and provide practical advice and instructions for every step of the data life cycle. The chapter on data management planning briefly covers data protection and data security, and there are separate chapters on information and consent as well as anonymisation and personal data.
The chapter on informing research participants and obtaining consent is currently being updated to include information on the effects of the GDPR. The updated chapter will be available by the end of October.
Any information relating to a natural person is personal data
Data protection issues should be considered whenever research involves studying natural persons, i.e. living human beings. The concept of personal data according to the Regulation is so broad that practically any information relating to a living human being is considered personal data. Particular attention should be paid to data protection issues when sensitive information, such as health data, is processed.
If data protection is properly taken into consideration from the beginning of the research, nearly any data set can be deposited at FSD for further use. Practically all data sets in FSD’s Aila Data Service are anonymised before dissemination. By anonymisation the risk of someone identifying an individual research participant is avoided.
FSD recommends that researchers anonymise data by themselves as far as possible. If you are considering depositing data with FSD, we suggest you allocate time and resources for anonymisation when planning your research.
FSD provides support for research data management
If you cannot find an answer to your question in the Data Management Guidelines, you can always contact FSD user services by email or phone. We will be happy to answer any questions, particularly if you plan to deposit your data with us.