The Council’s Working Party on biological and health data held its second fact-finding meeting on 12 September 2013. The meeting was focused on privacy and data control issues in research and clinical practice, and the Working Party heard from the following experts:
  • John Bowman, Head of EU and International Data Protection Policy, Ministry of Justice

  • Ian Brown, Senior Research Fellow, Oxford Internet Institute

  • Toto Anne Gronlund, Head of Patient and Public Partnerships, NHS Connecting for Health

  • Alastair Kent, Director, Genetics Alliance UK

  • John Loder, Programme Leader (Health Advisory Team), Young Foundation

  • Sam Smith, Technologist, Privacy International

  • David Townend, Associate Professor, Maastricht Unviersity

  • Effy Vayena, Senior Research Fellow, University of Zurich

  • Tim Williams, Co-founder and Director, myClinicalOutcomes

The purpose of the meeting was to hear about challenges and concerns associated with the collection, storage, and use of data relating to research participants and patients. Attendees also discussed possible solutions to such challenges, including legal, institutional and technological mechanisms developed to address privacy concerns. Over the next months, the Working Party will continue gathering evidence, focusing on cross-border governance issues, market economics, and screening and risk-profiling. A public consultation will be held soon.