Citizen Meetings in the Human Brain Project
The Human Brain Project citizen meetings on privacy and data protection in research
In the first two months of 2016, the Human Brain Project (HBP) engaged in a dialogue with European Citizens in six countries about privacy and data protection in research projects. The HBP Citizen Meetings on Data Protection and Privacy were organized by the Ethics and Society Subproject of the HBP in Austria, Bulgaria, Poland, Portugal, the Netherlands and Sweden. The organizers will publish a summary report in April of all six meetings that includes recommendations from the European citizens who participated regarding privacy protection and data management in the HBP. The HBP will use the results of the Citizen Meetings to develop its policy on data privacy and protection.
According to the Danish Board of Technology Foundation , an HBP Consortium member and the main organizer of the Citizen Meetings, "The regulation of science and technology and issues like data protection is increasingly coordinated through international negotiations, and while experts, industry and strong interest groups and NGOs have found ways to influence and interact with such negotiations, lay citizens have practically no role in these processes. The HBP Citizen Meetings provided an opportunity for citizens to reflect and express their opinions, and to directly feed these opinion into the policy process of research development. The citizen meetings of the HBP is a step in the development of responsible research and innovation practices (RRI) in the management of science and technology."
HBP citizen meetings on privacy and data protection in research projects – 2016
| Where || When || Local organiser |
| AUSTRIA || January 30, 2016 || Anja Gänsbauer & Ulrike Bechtold |
| POLAND || February 6, 2016 || Zuzanna Warso |
| PORTUGAL || February 6, 2016 || Silvia Di Marco & Mara Almeida |
| BULGARIA || February 13, 2016 || Zoya Damianova |
| THE NETHERLANDS || February 20, 2016 || Tjerk Timan |
| SWEDEN || February 27, 2016 || Edward Andersson |
Materials and program
All materials presented here have been translated into the national language of the different countries. They are provided here for general information.
The information leaflet was given to all participants:HBP_Cit_meetings_informationleaflet
The short program:Short_Program_HBP_citizenMeetings_
The generic template for facilitating the meetings: HBP_template_Intro_Generic
Immediate outcomes of the project were:
• Citizen meetings about privacy and data protection issues in relation to research in 6 EU countries
• A policy report about the results
• Presentation of the national results to HBP ethics manager, Ethical Advisory Board, Board of directors and relevant sub-projects
In the long term the outcome will be:
• Demonstrating and establishing public participation as a component of RRI and as a valuable contribution to the development of R&I in the HBP
• Engaged and empowered citizens in the public debate
• Capacity building – nationally as well as internationally for organizing public participation on complex policy issues
• Establishment of best practice for Citizen Participation in the HBP and RRI
• A solid baseline for future policy development in the HBP
Picture credit: Jørgen Madsen, Danish Board of Technology Foundation. Picture is from the Danish meeting of the WorldWideViews on climate and energy. During WorldWideViews, 99 meetings where simultaneously held across the world on June 6, 2015.
For more information on the meetings contact Lise Bitsch, Project Manager +45 31133203