The collection, linking and use of data in biomedical research and health care: ethical issues


Published 03/02/2015

Front cover
Hands point to big screen with DNA sequence code

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.

Consultation responses


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