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Legal Requirements for Participant Information
In scientific research, participants often play an important role. Experiments are conducted, questionnaires are completed, or observations are made, for example. To inform participants about the research, detailed information letters are often used. These letters explain the purpose of the study, what is expected of them in terms of time commitment, potentially sensitive questions, any risks involved, and what will happen with their data.
Since 2018, the GDPR (General Data Protection Regulation) has been in effect, introducing new rules regarding the use of personal data. Personal data refers to information that can be traced back to a specific individual.
If personally identifiable data is processed in your research, the following information must always be provided to participants:
- Which personal data is being processed
- What legal basis there is (for example, ‘public interest’ or ‘consent’)
- The purpose for processing the personal data (e.g., for research)
- Whether the personal data will be shared with other organizations
- How long the personal data will be retained
- How participants can contact the researchers or the university
Since it can sometimes be difficult to incorporate all the required points into the information letter, we have created sample letters that can be downloaded from our website. Different templates are available, depending on whether or not personal data is being processed and the chosen legal basis.
The risk is that these letters may become lengthy and difficult to read due to all the required information. Therefore, information letters for research involving personal data also include a ‘privacy summary’ (also available separately). This allows the mandatory information to be communicated to participants in a simple manner, while they can still access more detailed information if they wish. This page can be customized with details about your own research, using clear and simple language. You can also make use of the tools available on the FERB website.