News27th July 2023

Towards a best practice UK model for ethical standards in genomics healthcare and research

The Nuffield Council on Bioethics publishes findings on how to develop a UK best practice approach for ethics in genomics healthcare and research.

GenomicsPersonalised healthcareBiotechnology

We are delighted to share the findings of our work with the Office for Life Sciences (OLS) and genomics healthcare leads in Scotland, Wales and Northern Ireland to take forward the UK Government’s commitment to establishing a ‘gold standard UK model’ for ethical standards in genomics research and healthcare in the UK.

We are pleased to publish:

• A summary report which brings together key themes from the workshops which brought together people with experience in clinical genetics, public health, ethics, public engagement, research, policy and regulation, and those with personal experience of genetic conditions.
• A summary of 30 submissions we received to our call for case studies held in summer 2022, illustrating how people in the UK are considering the ethical issues raised by genomics healthcare and research.

It is clear that clinicians, researchers, patients and policy makers are encountering a variety of ethical issues in genomics healthcare and research, and that ethical advice and guidance is spread out over many different institutions and locations which can make it hard to navigate.

Our work suggests that a best practice model could help those working in the field of genomics to negotiate these issues more effectively and help to promote a more consistent approach to considering ethical issues. The ultimate aim would be to improve, and make more equitable, the experiences of patients and research participants in studies that use genomic data.

Following today’s publications, we are now planning a next phase of work looking to map out existing resources and guidance on ethical considerations in the use of genomics in healthcare and research. We want to understand what is already available and identify areas where further guidance is needed. If you are someone who has experience in the field of genomics healthcare/research and ethics and would like to suggest resources to include in this developing piece of work, please do get in touch with us on bioethics@nuffieldbioethics.org.