Genomics healthcare and research

Project Background

In its Genome UK strategy, the Government committed to establishing a gold standard UK model for how to apply strong and consistent ethical and regulatory standards, while recognising the need for more discussion on how to achieve this in a meaningful way.

We are helping to facilitate those discussions. Last summer, we issued a call for case studies of existing and past work from the UK’s rich ecosystem of world-leading expertise on the ethical issues raised by genomics. Throughout December 2022 we held a series of workshops with clinicians, researchers, patients and ethicists to:

• Gather and share best practice
• Build connections between people and organisations in the UK with an interest in the ethical issues raised by genomic healthcare and research
• Identify the potential features or steps of a ‘gold standard UK model’ for ethics in genomics, as well as the challenges and barriers to applying such a model.

Our analysis and findings will help the Government develop a UK model for how to apply ethical standards to genomics initiatives.

We will be publishing the findings from this project in Spring 2023. If you would like to receive this please email us on bioethics@nuffieldbioethics.org.

This work is funded and led by the Nuffield Council on Bioethics.

Project lead