Article,

My health data—your research: some preliminary thoughts on different values in the General Data Protection Regulation

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International Data Privacy Law, (November 2014)
DOI: 10.1093/idpl/ipu028

Abstract

Keypoints ICT is a key driver of medical research today. ICT-driven medical research often deals with better accessability and connectivity of existing (personal) medical data which brings data protection rules into play. It is of utmost importance to distinguish anonymous from personal data here. The upcoming reform of European Data Protection Law will have a significant impact on ICT-supported medical research. Key areas of interest are the distinction between personal and anonymous data and articles 81 and 83 of the Commission's proposal for a General Data Protection Regulation. The reform will need to find a precise answer to the question of under which circumstances informed consent is needed or not needed in cases in which existing personal data shall be used for ICT-supported clinical research. No clear answer on this is given yet so that further debate is needed. ICT is a key driver of medical research today.ICT-driven medical research often deals with better accessability and connectivity of existing (personal) medical data which brings data protection rules into play. It is of utmost importance to distinguish anonymous from personal data here.The upcoming reform of European Data Protection Law will have a significant impact on ICT-supported medical research. Key areas of interest are the distinction between personal and anonymous data and articles 81 and 83 of the Commission's proposal for a General Data Protection Regulation.The reform will need to find a precise answer to the question of under which circumstances informed consent is needed or not needed in cases in which existing personal data shall be used for ICT-supported clinical research. No clear answer on this is given yet so that further debate is needed.

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