EU Data Protection law revisions may stifle medical research

30 January 2014

This week saw the launch of a Wellcome Trust-led coalition of medical organisations aiming to oppose recent amendments to the European General Data Protection Regulation.
The PHG Foundation is part of this coalition. We are concerned that the amendments suggested by the European Parliament’s Civil Liberties, Justice and Home Affairs (LIBE) Committee will have a chilling effect on research across Europe (see previous news).
The original version of the draft Regulation required specific and explicit consent for the use and storage of personal data, but included an exemption for research. The LIBE amendments reduced the scope and applicability of this exemption by making it difficult (maybe impossible in some circumstances) to use a person’s personal data in research without their specific consent.
The PHG Foundation supports strong safeguards for the privacy and confidentiality of patients and research participants – but such safeguards should be proportionate and take into account the benefits of research. That is why we support the joint statement of the coalition explaining how the amendments might damage research efforts across Europe and how the Regulation might be made more conducive to research. 

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