Stakeholder Dialoues in the Human Brain Project

HBP stakeholder engagement activities aim to provide opportunities for researchers and stakeholders to engage in critical dialogue and to explore the broader social, political, ethical and legal implications of HBP research. By inviting non-HBP experts and stakeholders, controversies may be anticipated and a better dialogue can be created. See selected themes for the stakeholder dialogue meetings below.

 

FUTURE COMPUTING & DUAL USE

DataprotectionIn a series of meetings between experts, stakeholders and HBP researchers we have explored the potential risk of HPB research being applied for political, security, intelligence or military purposes (dual use). The meetings form the first part of a continued to reflect on dual use issues, and how a research project like HBP can work to avoid dual use.

The experts stressed among other things the need of fostering a culture of awareness and responsibility within the scientific community and continue its system of ‘checks and balances’ for access to its ICT platforms. In order to engage the civil society in the debate, we are currently conducting online and face-to-face public engagement activities on the topic of dual use of HBP research results.

Dual use2

LIVING UP TO PRIVACY & DATAPROTECTION

We have organized a number of citizens meetings along with dialogue meetings between HBP researchers and external experts and stakeholders to ensure that HBP lives up to the legal and moral requirements of privacy and data protection.76 % of the consulted citizens indicated that they did not feel sufficiently informed about who had access to their data, and what it might be used for. The external experts, among other recommendations, urged for a Privacy Impact Assessment (PIA). Data management and privacy concerns continue to be a hot topic within HBP.

 

EMPOWERMENT OF DATA SUBJECTS
Informed consentIn 2017 we are continuing our work on building an ethical framework for data governance in HBP. We are exploring ways to not only protect data subjects, but also ways to empower data subjects participating in HBP research. In a number meetings we are inviting experts and stakeholders to discuss how to balance data protection against other personal rights such as the right to be informed about the use of personal data, the right to contribute to research, the right to get access to data and the right to withdraw from research.

 

NEWSLETTERS

Newsletter: Living up to privacy and informed consent in the Human Brain Project (December 2014)

Newsletter:  Opening up the Human Brain Project (HBP) to the neuroscience community (Oktober 2015)

Newsletter: Opening up the discussion on dual use in the Human Brain Project (HBP) (Oktober 2016)

 

OTHER ARTICLES

Informed consent as a mean to protect and empower people

We ask citizens about the risk of dual use of HBP research

 

 

MORE INFO

Read more about our events

Read more about citizen engagement