Ethics and Governance Framework
1st April 2022
Improvements in early detection and prevention of disease will enable better provision of care, reduce costs and improve health outcomes. The Our Future Health (Our Future Health) programme aims to enrol up to five million people to a research cohort to help address this need. The success of Our Future Health depends on building and maintaining public trust and confidence. This will require the programme to demonstrate high ethical and governance standards across all its activities. Our Future Health established an Ethics and Feedback Advisory Group (EFAG) to develop an Ethics and Governance Framework to guide its operations.
Our Future Health can learn from best practice established by other large cohorts, for example UK Biobank. However, there are some novel aspects of Our Future Health which need particular thought, such as:
the size of Our Future Health and the practicalities of recruiting such a large and diverse cohort, including the need to communicate with participants largely through a digital platform, with very little opportunity for personal contact;
the intention to regularly use the cohort to recruit participants for further studies to test diagnostics, treatments or behavioural interventions;
the proposal to provide participants with individual health-related information, for example their disease risk categorisation.
We set out some key principles that should guide decision making and offer some high-level guidance on the major operational areas of the programme.