News29th May 2025

Nuffield Council on Bioethics to lead UK-wide genomic ethics network

The Nuffield Council on Bioethics (NCOB) is set to establish a network to foster knowledge exchange and co-develop ethical resources and guidance for those working in genomics across the UK.

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Through working in partnership with Genomics England, Our Future Health, UK Biobank and the Wellcome Sanger Institute to set-up a UK-wide genomic ethics network, we will facilitate a collaborative approach to addressing the guidance gaps we identified in our 2024 report.

Participants in this network will play a central role in identifying where the need for support is greatest, helping to develop resources, and ensuring they are shared effectively. This will help to embed consistent and equitable approaches to genomic research and clinical practice that ultimately improve patient experiences.

We are proud to support this network’s establishment. Genomics has led to incredible advances in how we diagnose and treat rare conditions and cancers and holds considerable promise in transforming healthcare. However, that cannot be realised without the trust and support of patients, participants, and the wider public.

This network will bring knowledge, diverse expertise and resources together to ensure trustworthiness, transparency and the best ethical practices are right at the heart of the UK’s world-leading genomic research and healthcare system.” 

Dr Natalie Banner, Director of Ethics at Genomics England

We are delighted to be part of this network with other organisations who share our commitment to ethics in genomics research. We’re looking forward to working collaboratively to help the health research community navigate ethical issues, to create the best possible experiences for those taking part in research.”

Dr Raghib Ali, CEO and Chief Medical Officer at Our Future Health

We’re pleased to be participating in this important new network and engaging in the ethical dimensions of genomics research. We look forward to building on our long-standing relationships with the genomics research community to find collaborative and innovative solutions to the health challenges we face.”

Professor Naomi Allen, Chief Scientist at UK Biobank

This new network will enable the UK to apply the highest standards to genomic research and healthcare. We are thrilled to be working with Nuffield Council on Bioethics, UK Biobank, Genomics England and Our Future Health to deliver the recommendations from the 2020 Genome UK report.”

Dr Sarion Bowers, Head of Policy and Advocacy at the Wellcome Sanger Institute

The NCOB has long worked to offer constructive, independent ethical advice to decision-makers in the genomics sector, supporting the embedding of ethics into practice and research.

Since 2022, we have formally partnered with the Office for Life Sciences to take forward the 2020 Genome UK commitment to a ‘gold standard UK model’ for strong and consistent ethical and regulatory standards in genomic research and healthcare.

Through this work and further engagement with people involved in the genomics community, we identified a clear need for a co-ordinated approach to developing and disseminating ethical best practice in genomics.

We are now taking this learning into practice, building a network that will enable members to exchange knowledge on any ethical issues they experience and identify opportunities for network collaboration on shared issues. This will also support a horizon scan for emerging areas that may require ethical consideration in the future.  

We are delighted to be working with Genomics England, Our Future Health, UK Biobank and the Wellcome Sanger Institute to establish and coordinate a genomics ethics network, which will be shaped by the needs of the genomics community.

The network will support those working in genomics research and healthcare to negotiate ethical issues, promote consistent approaches, and ultimately, create better, more equitable experiences for patients and research participants. We look forward to getting the network up and running as soon as possible.”

Professor Sarah Cunningham-Burley, Chair of the Nuffield Council on Bioethics

We will be reaching out to stakeholders as we look to build the network over the coming months. If you would like to hear more or discuss the plans for the network in more detail, please email us on bioethics@nuffieldbioethics.org.

You can read our 2024 map of existing ethical guidance available to those working in UK-based genomic research and healthcare here.