Current projectWork programme

Genomics healthcare and research

Developing a UK model for applying ethical standards to genomics initiatives.

Background

Genomics in healthcare and research is a fast-moving area of science. The development of a UK best practice approach for ethics in genomics healthcare and research could help those working in the field to negotiate ethical issues, promote consistency of approach and, ultimately, create better, more equitable experiences for patients and research participants.

In its Genome UK strategy (2020), the Government committed to establishing a ‘gold standard UK model’ for how to apply strong and consistent ethical and regulatory standards in genomics research and healthcare.

In a 2022 UK-wide shared commitments plan for the implementation of Genome UK, the four countries of the UK recognised the need for more discussion on how to achieve this in a meaningful way.From March-December 2022, we helped to facilitate those discussions in partnership with the Office for Life Sciences (OLS) and we published our analysis and findings.

Current work

Having played a leading role in bringing together existing ethics guidance and resources and identifying gaps that need to be addressed, we are now leading a UK-wide genomics ethics network.

Participants in this network will play a central role in identifying where the need for support is greatest, developing resources, and ensuring they are shared effectively. We continue to work with policymakers and attend the National Genomics Board, promoting the collaborative approach needed to embed consistent and equitable approaches to genomic research and clinical practice that ultimately improve patient experiences.