Ethics

An Ethical Governance Framework has been drafted by the Ethical Advisory Group of the UK10K project. This document sets out policies and guidelines for the UK10K project that specifically relate to the ethical and regulatory issues with regard to participant involvement.

People in a crowd

Wellcome Library, London

The purpose of this document is to provide an ethical framework for UK10K and to focus on specific issues that are key to the development and operation of UK10K. To achieve this we have drawn upon the ethical policy documents established by other large-scale genetic consortium projects, including the UK Biobank and the organizing schema of the International Cancer Genome Consortium, as well as upon the precedents established in current research practice.

Ethical Governance Framework

Lab technicians

Wellcome Library, London

The aim of the Ethical Governance Framework is to enable the UK10K project to operate as a federated system. This means that projects can work together under a common ethical framework, which can acknowledge the nuances of particular studies, while still allowing them to be part of a common endeavour. At the same time, we must make sure that there is sufficient harmonisation so that these very different studies can participate in an ethically-coherent project that maximizes the research benefit, while acknowledging the responsibilities and obligations that are owed to research participants. This document states the policies and guidelines for UK10K in the following areas:

Policies are the principles that all project members agree to abide by during the course of the project. Guidelines are recommendations that are believed to represent 'best practice' at the time of writing. We regard this as 'living' document and anticipate that there will be new examples of what is considered 'best practice' as these types of studies increase and practice develops.

Download the Ethical Governance Framework (PDF).

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