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Data for Health and Science Day of Action

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Information

On 16 June 2015, BBMRI-ERIC in collaboration with key research organisations, patient organisations, and academics will engage with EU policy-makers on the pending General Data Protection Regulation to explain how scientific research can be best supported by the proposed legislation to achieve innovation and discoveries and in the case of health, how research and healthcare can be enabled to ensure optimal treatments and medicines for patients.

The ‘Data for Health and Science’ Day of Action will consist of a series of meetings between the participating organisations and EU policy-makers as well as a seminar, where case studies will be presented to show how data is used in research today and why it is important to allow re-use for research purposes. In addition, speakers at the seminar will present proposed amendments which will aim to ensure personal data protection without inhibiting research and explain how this can be achieved.

The participating organisations will 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 Day of Action aims to sensitise EU policy-makers to the manner 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.

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 the European Parliament’s amendments. After the Council adopts its Common Position, the trialogue will begin. 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.

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

 

For additional information on the 'Data for Health and Science' seminar on 16 June and to register, please click on the following link:

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

www.iscintelligence.com

 

Declan Kirrane

Managing Director

ISC

Email: declan.kirrane@iscintelligence.com

Tel: + 32 (0)2 8888114

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 

www.bbmri-eric.eu

 

 

 

Agenda