Evidence gathering

Public consultation

The consultation on ethical issues raised by the linking and use of biological and health data ran between 17 October 2013 and 10 January 2014. The Council would like to thank everyone who contributed their views.

Fact finding meetings

The Working Party held a series of ‘fact-finding’ meetings as part of its work. A wide range of people were invited to give presentations and discuss their views and experiences, including on:

Evidence reviews

To inform its deliberations, the Working Party commissioned two reports from external academics:

Review 1: Actual harms resulting from security breaches or infringements of privacy involving sensitive personal biomedical and health data
By Professor Graeme Laurie, University of Edinburgh, Ms Leslie Stevens, University of Edinburgh, Dr Kerina H.Jones, Swansea University, and Dr Christine Dobbs, Swansea University

Review 2: Evidence relating to the history of the relationship between the private and public sector in the field of human genomics
By Professor Paul Martin, University of Sheffield and Dr Greg Holin, University of Nottingham

Previous work

Contact us

Nuffield Council on Bioethics
28 Bedford Square
London
WC1B 3JS

bioethics@nuffieldbioethics.org

+44 (0)20 7681 9619

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