European Data Protection Regulation

Work to ensure that the European Data Protection Regulation does not prevent important health research

Status: Ongoing

In January 2012 the European Commission issued proposals for a European General Data Protection Regulation. The Regulation is the legal framework on the protection of personal data. It will replace the current EU Directive and covers the use of personal data in research.

In October 2013, the LIBE committee of the European Parliament agreed edits to the Commission's draft that could have had a seriously negative impact on research. The next step was for the Parliament to negotiate a final draft with the Commission and the Council of Ministers. In June 2015, the Council published its position, meaning that these 'trialogue' negotiations could begin.

Scientific research using personal data generates important benefits by improving our understanding of society, health and disease. Currently, researchers are given access to personal data only under strict confidentiality controls.

The Academy has been working to see a Regulation that strikes an appropriate balance between the safe and secure use of personal data in research and the rights and interests of individuals. This has included the development of joint briefings and statements with UK and European partners.

We are also supporting the European Data in Health Research Alliance, who are drawing attention to this issue through where there is a petition supporting the need for data in research to improve health.

In December 2015, the trilogue negotations concluded with a broadly positive outcome for research - see our news story for more detail.

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