11 April 2017
PHG Foundation has joined with health and research organisations to respond to the Information Commissioner’s Office (ICO) consultation on their draft guidance to consent under the European Union’s General Data Protection Regulation (GDPR)
The UK government has confirmed that the GDPR will come into force in the UK, despite the UK’s forthcoming exit from the union. This draft guidance forms part of a suite of guidance that the ICO will produce to support the implementation on 25 May 2018 of the new regulation.
While welcoming the overall clarity of the guidance and the inclusion of scientific research, the response recommends further sector specific guidance for scientific research, including clarifying alternate legal bases for data processing, further processing and appropriate safeguards.
Read the full response here
During its legislative progress, previous drafts of the GDPR sparked considerable controversy over what was regarded as an unnecessarily restrictive approach to the availability of personal data for research. PHG Foundation has been part of a consortium, led by the Wellcome Trust, which has successfully advocated for a final regulation that is much more favourable for research, whilst keeping individual data safe.
PHG Foundation is continuing to work with government departments and signatories to this response to consider the impact of the GDPR on health and medical research more generally.