Report and resource bank18th January 2024

Towards a gold standard of ethics across genomic healthcare and research: Where are we?

We bring together, for the first time, a comprehensive UK map of publicly available ethics resources aimed at supporting the discovery, development and application of genomic technologies.

GenomicsPersonalised healthcare

Project report (PDF)Resource bank (updated June 2024)

This work, funded and developed in partnership with the Office for Life Sciences, brings together resources covering a range of topics including:

• consent and confidentiality
• data use and governance
• prenatal genomic testing
• synthetic genomic data

This work builds upon previous work including the report ‘Ethics in genomics and research: Building connections and sharing best practice’ and a summary of case studies published in 2023. It has been informed by engagement with a range of stakeholders and desk-based research. We are grateful to everyone who has contributed to this work.

Resource bank

This report is accompanied by a ‘resource bank’ which lists all the resources mentioned throughout the report. The bank is amendable over time at the request of external stakeholders who may have identified or developed missing or future resources. Similarly, resources can be removed on request if they are no longer relevant or appropriate. Requests can be made by emailing us at: bioethics@nuffieldbioethics.org.