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Roundtable Data Protection for Health: Enabling Research for Health

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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 Commission proposal contains a number of provisions and exemptions which are important for enabling scientific research, including medical research, and though the European Parliament has maintained the main exemptions, concerns about the impact of several restrictive amendments on research has made a dialogue between policy-makers and researchers necessary. Furthermore, researchers have feared that amendments to Article 81 will hinder the progress of medical research.
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 aims to contribute to the debate on the Data Protection Regulation by hosting the roundtable ‘Data Protection for Health’, which will be held on 28 January 2015 and will address options to ensure that a balance is struck between the protection of personal data and facilitating scientific research which leads to advances and innovations in our data driven knowledge and economy. Patient organisations, biobanks, the health sector, and research organisations have argued that the Data Protection Regulation should allow research to continue its work for the benefit of our knowledge based society, while safeguarding citizens’ fundamental rights through strong ethical governance and technical measures to prevent unlawful identification of individuals. The roundtable will be an opportunity for stakeholders to discuss what the data protection reform will mean for research, including health research, and for researchers to explain the risks associated with greater restrictions to research.
The new data protection regulation offers many benefits, such as harmonisation of data protection policies and free flow of personal data in the EU, and the Commission believes that greater online confidence will boost the digital economy, but stakeholders should discuss the amendments to the regulation to ensure that scientific research, including research for health, is not hindered or endangered by restrictive requirements, when existing ethical safeguards effectively protect personal data.
The roundtable aims to present the views of medical researchers and patients on the impact of the data protection Regulation on scientific research which relies on personal data around the period when the Council and the European Parliament will begin negotiations on a compromise text after the Council adopts its common position.  The Council’s partial general approach has broadly maintained the Commission’s favourable approach to research, recognising the vital role of personal data in many areas of research, including health research, but the final outcome will be determined by the European Parliament and Council’s negotiations on the articles relevant to research and health, which is expected to take place in 2015.
Should you have any questions about your participation, please do not hesitate to contact Ms Leticia Bouges:




Topics & Speakers




Declan Kirrane (moderator)

Managing Director, ISC Intelligence in Science




Jan-Eric Litton (Chair)

Director General, BBMRI-ERIC




Presentations and Discussion



Michaela Mayrhofer

Senior Project Manager, BBMRI-ERIC


Brendan Barnes  

Director IP and Global Health, EFPIA

‘Is GDPR Fit for Purpose?’


Catherine Doldirina

Researcher, Joint Research Centre, European Commission

‘IPCheM- The Information Platform for chemical monitoring’


Erik Briers  

Board Member, Epposi

‘What is “data protection” worth for a patient?’


Catherine Castledine  

Public Affairs Manager, Cancer Research UK

‘Personal Data & Research: Consent in the EU DPR’



Partner, Altius

‘Is GDPR Really an Antidote for Scientific Research?’



Gauthier Chassang

Data Protection Expert, Inserm

‘Draft GDPR and health-related scientific research: Where do we stand with the EU Council?’


Paul Jackson

Managing Director, CESSDA

‘Research, History, Statistics - and Science.  Acceptable Exceptions?’


Corentin Chaboud

President, CLORA




Maria Monica Tarazona Rua

Policy Officer, Science policy, foresight & data, DG RTD, European Commission

Overview of the DPR

Discussion and Q&A




Final Remarks

Jan-Eric Litton (Chair)

Director General, BBMRI-ERIC



End of Roundtable