Genomics healthcare and research

Report

Published 18/01/2024

Genomic project report front cover JPG

A project aimed at developing a UK model for applying ethical standards to genomics initiatives.

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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.

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

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Maili Raven-Adams

Researcher, Bioethics and Policy

Maili supports our work over a number of our priority areas.

Prior to joining the Nuffield Council on Bioethics, Maili worked as a policy analyst looking at regulatory and ethical issues in genomics. She has completed a master's in Medical Law and Ethics and an undergraduate degree in Law.

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