BBMRI-ERIC publishes recommendations on the General Data Protection Regulation
BBMRI-ERIC has published a position paper, proposing recommendations on the General Data Protection Regulation in relation to data use in research and particularly health research. The General Data Protection Regulation, proposed by the European Commission in 2012, has been closely followed by research-based and related organisations which have been concerned about the possible impact of the Regulation on data use in scientific research, including health research.
In an effort to raise awareness on those concerns, Biobanking and BioMolecular resources Research Infrastructure – European Research Infrastructure Consortium (BBMRI-ERIC) led a Day of Action on 16 June 2015 in Brussels on the implications of the Data Protection Regulation for science and health research, inviting EU policy-makers to consider the views of a number of organisations involved in research. The Day of Action was organised in collaboration with key research organisations, patient organisations, and academics and consisted of a seminar entitled ‘Data for Health and Science’ and meetings with Members of the European Parliament.
As part of the Day of Action campaign, participating organisations worked together on a position paper, proposing recommendations on the Regulation in relation to data use in research and particularly health research. The recommendations are mainly addressed to EU policy-makers currently discussing the Regulation in trialogue. It is expected that the trialogue negotiations on Chapter IX, which deals with the articles relevant to health data and research, will take place in November 2015.
BBMRI-ERIC aims to continue to raise awareness on the implications of the Regulation for biobanks and health research leading up to the trialogue in November and beyond.
The Day of Action recommendations are available at: http://bbmri.se/en/About-us/News-archive/Position-Paper-Day-of-Action-Data-for-Health-and-Science/
The seminar report and PowerPoint presentations are available at: http://www.iscintelligence.com/event.php?id=262
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