The Council’s Working Party on biological and health data held its fourth fact-finding meeting on 8 January 2014. The meeting focused on issues relating to international data sharing, and the Working Party heard from the following experts:
  • Katherine Littler, Policy Advisor, Wellcome Trust

  • Jonathan Sellors, Legal Counsel, UK Biobank

  • Dennis Kehoe, CEO, AIMES Grid Services

  • Marc Dautlich, Head of Information Law, Pinsent Masons

  • Jane Reichel, Lecturer, Uppsala University

  • Ruth Boardman, Partner, Bird and Bird

  • Becky Purvis, Head of Policy, Association of Medical Research Charities (AMRC)

  • Paul Flicek, Senior Scientist, EMBL-EBI

  • Ioannis Pandis, Researcher, Imperial College London

The purpose of the meeting was to discuss what the legal and ethical implications of cross-border sharing or linking of biological and health data could be, and how recent developments in cloud computing may be influencing international data sharing.

Points raised in the discussion included:
  • Broadly speaking, whereas data sharing is more straightforward when it is between countries with similar regulatory measures and infrastructure, there can be significant differences in how privacy protections are interpreted and enforced.

  • Data controllers/users therefore tend to find it more practical to use ad hoc private agreements to manage specific instances of data sharing

  • Cloud storage and computing has resulted in huge increases in data handling capacity and scalability, but the use of cloud systems can present security problems, particularly for data in transit

This is the last of a series of fact-finding meetings organised to inform the deliberations of the Working Party. The Working Party’s report, containing recommendations for policy and practice, will be published in winter 2014.

Find out more about the Council's work on biological and health data.