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

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.

• Download the consultation summary
  
• Download the consultation paper

Consultation responses

Anonymous

• Anonymous 1
• Anonymous 2
• Anonymous 3

Organisations

• Association of Medical Research Charities (AMRC)
• British Dental Association
• British Medical Association
• Cancer Research UK
• Centre for Longitudinal Studies, University of London
• Christian Medical Fellowship
• Clinical Trial Service Unit (CTSU), Nuffield Department of Population Health, University of Oxford
• eHealth Research Group, Leeds Institute of Health Sciences, University of Leeds
• Exeter Centre for the Study of Life Sciences
• Farr Institute at CIPHER, with input from the Innovative Governance Group of the Farr Institute for Health Informatics Research
• GeneWatch UK
• Human Fertilisation and Embryology Authority (HFEA)
• Information Commissioner's Office
• Mason Institute for Medicine, Life Sciences and the Law, University of Edinburgh
• Medical Research Council (MRC)
• National Bioethics Commission of Mexico
• Northern Ireland Privacy Advisory Committee
• Nowgen
• PHG Foundation
• Physiological Society
• Progress Educational Trust
• Royal Academy of Engineering
• UCL Centre for Health Informatics and Multiprofessional Education
• US Presidential Commission for the Study of Bioethical Issues
• Wellcome Trust
• Wellcome Trust Sanger Institute
• World Medical Association

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:

• Big data
• Patient/participant choices and privacy solutions
• Biomedical data in research and clinical practice across jurisdictional boundaries

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