Citizen Meetings in the Human Brain Project

FULL RESULTS BELOW

The Human Brain Project citizen meetings on privacy and data protection in research

In February 2016, the Human Brain Project (HBP), hosted citizen meetings in Austria, Bulgaria, Poland, Portugal, the Netherlands and Sweden. The HBP citizen meetings are set up to provide the public with an opportunity to reflect on issues related to privacy and data protection in research projects, and to provide their ideas and opinions directly to the researchers and managers of the HBP.  A report of all 6 meetings, was written up with the citizen’s recommendations for how to develop a policy for privacy protection and data management.The results of the citizen meetings will therefore be able to directly influence policy development in the HBP project.

HBP citizen meetings on privacy and data protection in research projects – 2016

Materials and program

All materials presented here will be translated into the national language of the different countries. They are provided here for general information.

The information leaflet 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

Outcomes of the citizen meetings:

• Citizen meetings about privacy and data protection issues in relation to research in 6 EU countries
• Country reports:
  • Austria
  • Bulgaria
  • The Netherlands
  • Poland
  • Portugal
  • Sweden
• Survey of attitudes across the 6 countries: Collected_results_Graphs_HBP_citizenmeetings
• Presentation of the national results to HBP ethics manager, Ethical Advisory Board, Board of directors and relevant sub-projects
• Poster presented at the HBP Summit 2016

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

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 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 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.