UK Biobank Ethics and Governance Framework

Since the beginning of the project, the funders of the UK Biobank have been committed to an ethically sound approach to the collection, storage and use of samples, and to extensive public consultation to identify public concerns and priorities. They have also sought to involve other key stakeholder communities, such as public health professionals, which would be instrumental to the project's success.

These consultations and ethical enquiries are providing valuable information that is shaping the proposed policies and practice of the UK Biobank. In particular they have informed the development of an Ethics and Governance Framework for UK Biobank, the first public draft of which is now published for comment. The Framework, a background document and summaries of the various ethical and consultation activities related to the UK Biobank are available below.

UK Biobank Ethics and Governance Framework: Report of public comments [PDF 220KB]

This report of the comments on the first public draft of the Ethics and Governance Framework (EGF) has been finalised. Also download the response from the funders [Word 24KB].

Background document [Word 90KB]

Prepared by the Interim Advisory Group, this informal background document outlines the advisory process and discusses the rationale for principal aspects of the Framework.

UK Biobank ethical and consultation activities

Summaries on consultation workshops and studies conducted to shape the proposed policies and practice of the UK Biobank.