On the occasion of the Day of Action on Data for Health and Science on 16 June 2015 in Brussels, BBMRI-ERIC -Biobanks and Biomolecular Resources Research Infrastructure- hosted a seminar entitled ‘Data for Health and Science’ to explain the reasons why personal data is necessary to scientific research, including medical research, and how the EU General Data Protection could ensure access to data in scientific research whilst protecting the privacy and rights of data subjects through ethical, legal, and technical measures. The event was attended by EFA EU Policy and Membership Officer Jelena Malinina.
In 2012, the European Commission proposed a reform of the EU’s 1995 data protection rules in view of strengthening individual rights to their personal data in light of the increasing availability of personal data in the digital economy. The European Parliament adopted its amended draft on March. The negotiations are ongoing and so far, the Council's partial general approaches have been more favourable to research than the European Parliament's text.
The ‘Data for Health and Science’ seminar explained the EU data protection reform and its implications for research, present relevant case studies, and put forward recommendations to a wider audience, including research organisations, patients, policy-makers, and EU citizens. In the first segment of the seminar, speakers from the Insight Centre for Data Analytics focused on the role of data analytics. The second segment presented the views of a variety of stakeholders, including patient organisations, research organisations, research infrastructures, and academia.
To know more about our vision on ICT for chronic diseases, please visit our e-health for chronic diseases section.
To have more information about the seminar, please visit BBMRI-ERIC website.