Data for Health and Science#

June 16, 2015#

ISC and BBMRI-ERIC (Biobanking and BioMolecular Resources Research Infrastructure) are planning a ‘Data for Health and Science’ day of action for 16 June 2015, intended to bring together stakeholders concerned with the use of data for science and health in the context of the pending EU General Data Protection Regulation. The format of the Day of Action will be designed to coordinate activities amongst interest groups under the leadership of BBMRI-ERIC to raise awareness with policy-makers and engage with them more actively in advance of the planned trialogue, which will take place after the Council adopts its position on the General Data Protection Regulation.

Brussels, 21 April 2015#

The EU is currently preparing a regulation on personal data protection to replace the European 1995 ‘Directive on the protection of individuals with regard to the processing of personal data and on the free movement of such data’ and adapt the rules to the new challenges brought by globalisation and new technologies. The Commission’s proposed ‘Regulation on the protection of individuals with regard to the processing of personal data and on the free movement of such data’ (General Data Protection Regulation), published on 25 January 2012, aims to enhance the rights of data subjects through greater control of their data, more transparency, and greater enforcement of European data protection rules. The European Parliament subsequently adopted its amendments on 12 March 2014, and the Council’s Common Position is pending.

In the view of a number of key organisations, such as BBMRI-ERIC, Wellcome Trust, Cancer Research UK, EPPOSI, CESSDA, EFPIA, and Eurocan Platform amongst others, the legislation will have important implications for the use of data in health and scientific research.

Consequently, a day of action entitled ‘Data for Health and Science’ is being organised and will take place in Brussels on 16 June 2015. The Day of Action aims to sensitise EU policy-makers to the manner in which scientific research is currently conducted and to invite them to consider the possible unintended impacts of the General Data Protection Regulation on the research and innovation landscape in the European Union and the potential impacts on European research infrastructures as well as transnational research collaborations.

The Day of Action will consist of a series of meetings between the participating organisations and EU policy-makers and will include a seminar at the Stockholm Region EU Office, where case studies will be presented to show how data is used in research today and why it is important to allow re-use of data for research purposes. In addition, speakers will suggest solutions, on behalf of their organisations, which aim to ensure personal data protection without inhibiting research and explain how this can be achieved. The participating organisations will use the seminar to explain the forms of consent used in research as well as the ethical and technical measures which already exist to protect the privacy of data subjects and prevent unlawful re-identification. The seminar will include the following speakers:

• Chair: Jan-Eric Litton, Director General, BBMRI-ERIC
• Erik Briers, Board Member, EPPOSI /Chair, BBMRI-ERIC stakeholder forum
• Catherine Castledine, Public Affairs Manager, Cancer Research UK
• Brendan Barnes, Director IP and Global Health, EFPIA
• Beth Thompson, Policy Adviser, Wellcome Trust
• Jasper Bovenberg, Lawyer, BBMRI-ERIC Dutch Node
• Jane Reichel, Member, Centre for Research Ethics & Bioethics, Uppsala University
• Paulo Silva, Legal Officer, DG JUSTICE, European Commission
• Paul Jackson, Director, CESSDA

On 12-13 March 2015, Justice Ministers in the Council meeting reached a partial general approach on chapter II of the General Data Protection Regulation, which is more favourable to research than some of the European Parliament’s amendments. After the Council adopts its Common Position, the trialogue will likely begin in the summer of 2015. Trialogues are meetings attended by representatives of the European Parliament, the Council and the Commission with the purpose of reaching an agreement on a package of amendments. The Council aims to adopt its overall position at the next Justice and Home Affairs Council meeting on 15-16 June.

Additional information on the seminar is available on this page: http://www.iscintelligence.com/event.php?id=262

If you or your organisation would like to participate on 16 June, or would like to contribute suggestions or otherwise take part, please contact:

Leticia Bouges
Policy Analyst
ISC
Email: leticia.bouges@iscintelligence.com
Tel: +32 (0)2 8888108
http://www.iscintelligence.com

If you require any further information about BBMRI-ERIC, please contact:

Michaela Th. Mayrhofer PhD
Senior Project Manager
BBMRI-ERIC
Email: michaela.th.mayrhofer@bbmri-eric.eu Tel: + 43 316 34 99 17-13
http://www.bbmri-eric.eu

Editor’s Note:

Further information on the 12-13 March 2015 JAI Council agenda is available at:
http://www.consilium.europa.eu/en/meetings/jha/2015/03/12-13 Provisional agenda for the 15-16 June 2015 JAI Council meeting (p. 35):
https://www.consilium.europa.eu/uedocs/cms_data/docs/pressdata/en/fc/140297.pdf Commission Proposal for a General Data Protection Regulation:
http://eur-lex.europa.eu/legal-content/en/TXT/?uri=CELEX:52012PC0011 European Parliament amended text:
http://www.europarl.europa.eu/meetdocs/2009_2014/documents/libe/pr/922/922387/922387en.pdf