Opening up the discussion on data governance and consent
EITN event held 11-12 December 2017
Data on patients and research participants, stored in hospitals around the world, provide a valuable resource for research. The Human Brain Project (HBP) hopes to use these valuable health databases for its research on providing more accurate diagnoses and personalized medicine for brain diseases. With the incoming General Data Protection Regulation (GDPR), such research raises questions on appropriate data governance and informed consent, but also about trust and societal values.
During a two-day seminar at EITN, HBP researchers joined with leading neurologists, personal data managers, bioethicists, legal advisers and patient representatives to discuss the ethical and legal challenges setting up and participating in data driven research.
Prof. Jo Samanta, keynote speaker at the seminar, emphasised that there is a growing tension between privacy rights and the benefits to society. How HBP should address this tension through the GDPR regulations and ethical data stewardship was discussed throughout the seminar. The main conclusion from the seminar is that HBP should go beyond the legal requirements for personal data governance and base its data governance on several personal and societal values that include data privacy but also include data control, reciprocity, reliability, engagement, societal utility and trust.
• The HBP must ensure that research activities comply with the GDPR in order to balance the competing interests of privacy and innovation;
• The tension between privacy and societal interests require that data utility and social utility are carefully considered case by case;
• All data should be treated as personal with sufficient anonymization as a back-up;
• An ethical framework in data sharing platforms should be based on a web of trust and be developed by engaging with key data stakeholders;
• Research participants should as far as possible have something in return: if not results, then a vision;
• The HBP should uphold its credibility by ensuring that people are informed about the risks and benefits of participating in HBP research.
More information about the seminar can be found at www.hbp.tekno.dk