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Data for Health and Science Seminar

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Information

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. 

Practical Information:

Time: 11:00-14:00

Location: EU Stockholm Region Office, Avenue Marnix 28, Brussels 

 

For further information, please contact:

 

Leticia Bouges

Policy Analyst

ISC

Email: leticia.bouges@iscintelligence.com

Tel: +32 02 8888108

 

Declan Kirrane

Managing Director

ISC

Email: declan.kirrane@iscintelligence.com

Agenda

 

Time

Topics & Speakers

11:00

Professor Jan-Eric Litton (Chair)

Director General, BBMRI-ERIC

 

11:10

 

Declan Kirrane (Moderator)

Managing Director, ISC

 

11:15

 

Presentations

 

Professor Barry O'Sullivan

Director, Insight Centre for Data Analytics, UCC

‘Insight and the Magna Carta for Data’

 

Professor Mark Keane

Funded Investigator, Insight Centre for Data Analytics, UCD

‘At the Heart of Big Data’

 

Frédéric Destrebecq

Executive Director, European Brain Council

 

Dr. Simon Foley

Funded Investigator, Insight Centre for Data Analytics, UCC

‘Socio-Technical Challenges in Security for Personal Data’

 

12:00

Coffee & sandwiches Break

12:30

 

 

Professor Jan-Eric Litton (Chair)

Director General, BBMRI-ERIC

 

12:35

 

Presentations 

 

 

Dr Erik Briers

Board Member, EPPOSI /Chair, BBMRI-ERIC stakeholder forum

 

Jasper Bovenberg

Lawyer, BBMRI-ERIC Dutch Node

 

Paulo Silva

Legal Officer, DG Justice, European Commission

 

Professor Jane Reichel

Member, Centre for Research Ethics & Bioethics, Uppsala University

 

Jacques Demotes-Mainard

Director General, European Clinical Research Infrastructure Network (ECRIN)

 

Paul Jackson

Managing Director, CESSDA

 

Robert Frost

Policy Director, Medical Policy, Office of the Chief Medical

Officer, GlaxoSmithKline, UK

 

Catherine Castledine 

Public Affairs Manager, Cancer Research UK

 

Dr Beth Thompson

Policy Adviser, Wellcome Trust

 

 

13:47

 

Professor Kurt Zatloukal

Chair, Institute of Pathology, Medical University of Graz &

Professor Jane Reichel (Co-Rapporteurs)

 

13:50

 

Discussion and Q&A

 

13:58

 

Professor Jan-Eric Litton (Chair)

Director General, BBMRI-ERIC

 

14:00

Conclusion