On the occasion of the Day of Action on Data for Health and Science on 16 June 2015 in Brussels, led by BBMRI-ERIC (Biobanks and Biomolecular Resources Research Infrastructure), BBMRI-ERIC will also host a seminar entitled ‘Data for Health and Science’ at the EU Stockholm Region Office in Brussels 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.
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 at first reading in plenary on 12 March 2014 by 621 votes to 10 with 22 abstentions. The Council aims to reach a common position at the next Justice and Home Affairs meeting on 15-16 June 2015. So far, the Council's partial general approaches have been more favourable to research than the European Parliament's text.
BBMRI-ERIC, which is one of the largest health research infrastructures in Europe today, primarily aims at establishing, operating, and developing a pan-European distributed research infrastructure of biobanks and biomolecular resources, supporting high-quality biomolecular and medical research. BBMRI-ERIC has been pushing for a balance between the protection of personal data and facilitating scientific research to enable innovation in our data driven knowledge and economy.
On 28 January 2015, BBMRI-ERIC held a roundtable where representatives of patient advocacy groups, biobanks, research infrastructures, the European Commission, the Joint Research Centre, and other stakeholders discussed concerns about several developments in relation to the proposed General Data Protection Regulation. In relation to health research, the stakeholders present acknowledged the value and importance of enabling fair access to personal data in creating knowledge and breakthroughs benefiting patients, citizens, and society at large. Among the main concerns raised was the potential harm to patients in the event of unwarranted restrictions to health research. There is a risk that the European Union will lose its competitiveness in research and innovation. It was also thought that the important existing role of ethics committees and technical safeguards in protecting personal data has not been sufficiently taken into account or understood.
The roundtable participants agreed about the need to show that the current proposed versions of the General Data Protection Regulation would discourage research in the European Union and hamper Horizon 2020’s aims of securing Europe's global competitiveness, producing world-class science, and removing barriers to innovation.
The ‘Data for Health and Science’ seminar will pick up from the roundtable, and speakers will explain 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 will focus on the role of data analytics. The second segment will present the views of a variety of stakeholders, including patient organisations, research organisations, research infrastructures, and academia.
Location: EU Stockholm Region Office, Avenue Marnix 28, Brussels
For further information, please contact:
Tel: +32 02 8888108