In February 2016, the Human Brain Project hosted citizen meetings in Austria, Bulgaria, Poland, Portugal, the Netherlands and Sweden on privacy and data protection in research. The HBP citizen meetings were set up to provide the public with an opportunity to reflect on issues related to privacy and data protection in research projects like HBP, and to provide their ideas and opinions directly to the researchers and managers of the HBP. A report on all six meetings has been written with the citizen’s recommendations for how to develop a policy for privacy protection and data management.
HBP citizen meetings on privacy and data protection in research projects were held in Austria, Poland, Portugal, Bulgaria, the Netherlands and Sweden.
Outcomes of the citizen meetings:
The citizen meetings of he HBP is set up to provide an opportunity for citizens to reflect and express their opinions, and to directly feed these opinion into the policy process of research development. The results of the citizen meetings on data protection and privacy have been summarized in six national reports which has been circulated in the HBP and have influenced the data policy development in the HBP.
Across all meetings an average of 76 % of citizens indicated that they did not feel informed enough about who had access to their data, and what their data might be used for. The citizens therefore recommended research projects to be transparent about the use of personal data, and to explain to citizens how and why their data might be used for research.