Topic
Genomics
Explore our work in genetics and genomics.
Genomics healthcare and research
Report
Current project
A project aimed at developing a UK model for applying ethical standards to genomics initiatives.
Genomics healthcare and research
Clinicians, researchers, patients, and policy makers are encountering a variety of ethical issues in genomics healthcare and research.
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.
The development of a UK best practice approach – or 'gold standard model' – 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.
January 2024: Mapping existing ethics resources and guidance in genomics healthcare and research
Following our report ‘Ethics in genomics and research: building connections and sharing best practice’ in 2023, we have continued our partnership with the Office for Life Sciences (OLS) to map existing ethics resources across the genomic healthcare and research sector.
After hearing from people across the genomic healthcare and research field, we have compiled and published a comprehensive resource bank and we have published a new report which shares these and identifies gaps where further resources are needed.
- Download the report: 'Towards a gold standard of ethics across genomic healthcare and research: Where are we?'
- Download the resource bank.
This work was funded by the Office for Life Sciences.
July 2023: Building connections and sharing best practice
In 2022/2023 we led discussions on establishing a UK best practice approach for applying strong and consistent ethical standards in genomics research. This work was carried out in partnership with the Office for Life Sciences (OLS) and genomics healthcare leads in Scotland, Wales, and Northern Ireland.
We published findings from this project in July 2023, including a summary report from our workshops and case studies. Following on from this work, we then undertook a mapping of existing ethics resources in order to understand what is already available and identify areas where further work is needed.
This work was funded and led by the Nuffield Council on Bioethics.
Project lead
Maili Raven-Adams
Researcher, Bioethics and Policy
Since joining us in May 2023, Maili has led our Environment and Health priority area and Genomics-related work. She also previously supported our independent review on disagreements in the care of critically ill children.
Before joining the team, Maili worked as Policy Analyst at the Global Alliance for Genomics and Health, based within the policy team at the Wellcome Sanger Institute. Here, she developed ethical and regulatory policies to support genomics and international data sharing.
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