Genomics, Healthcare and You

Exploring views on the future role of genomics in healthcare

Genomics, Healthcare and You

Genomics has the potential to play an increasingly important role in healthcare. It could help people receive medicines that work best for them, identify opportunities to prevent or detect ill health earlier, and support more personalised care.

As interest in these possibilities grows, it is important to understand what matters most to the people who could benefit.

This will be particularly crucial for the design and delivery of a new research study into pre-emptive genomic testing for adults, which Genomics England has committed to leading as part of the 10 Year Health Plan for England and UK Life Sciences Sector Plan.

Genomics, Healthcare and You is a national engagement programme commissioned by Genomics England to explore public and healthcare professional views on how genomic information could be used as part of routine healthcare in the future. The programme was designed to ensure that people’s perspectives, expectations, hopes and concerns help shape future decisions from the very beginning.

About the programme

Since launching Genomics, Healthcare and You in 2025, Genomics England has worked with expert engagement organisations and community partners to hear from people across England.

The programme brought together insights from three strands of engagement:

· A public dialogue involving a representative sample of members of the public from across England

· Engagement with communities that are often underrepresented in genomics research

· Workshops and survey with healthcare professionals who don’t typically use genomics in their day-to-day practice

The findings from this engagement will help inform the design of a new genomics research study in the adult population and contribute to wider discussions about the future of genomics in healthcare.

What we heard

People were positive about the potential of genomics in healthcare – but their support came with clear expectations around trust, fairness and transparency. The design and delivery of the research study will need to reflect these findings and ensure the right foundations are put in place to meet these expectations.

Focus on using genomics to support health-related decisions

Using genomic results to help improve how medicines are used, also known as pharmacogenomics, was identified as a key area of focus. People were also willing to receive risk information, as long as it could be acted upon.

Genomics doesn't exist in a vacuum

People viewed genomics through the lens of their experiences of the NHS and wider society. Clear communication, equitable access to information and support and NHS readiness were seen as essential.

Human support matters for risk-related results

Participants consistently said that genomic information should be accompanied by access to professionals who have the expertise to explain findings, answer questions and provide support when needed.

Trust must be earned

Trust was a recurring theme throughout the programme. Participants wanted transparency, meaningful engagement and reassurance that genomic information would be used, stored and safeguarded responsibly and for health-related purposes.

Consent is a conversation

People did not see consent as a one-off decision. They wanted ongoing communication and opportunities to stay informed about how their information is being used over time.

Representation matters

Participants wanted genomic research to reflect the diversity of the population and deliver benefits for all communities, not just those already well served by healthcare systems.

What happens next?

The findings from Genomics, Healthcare and You will be used alongside scientific, clinical and operational evidence alongside further stakeholder views to inform the design of Genomics England’s future adult population genomics research study, as outlined in the 10 Year Health Plan for England and the Life Sciences Sector Plan. These plans have committed to Genomics England delivering a research study, that will sequence the genomes of 150,000 adults to assess how genomics can be used in the NHS to support proactive, preventative healthcare.

The insights from the engagement programme will also influence our long-term approach to being a trustworthy steward of genomic data.

We are committed to sharing what we learned, explaining how insights are influencing our work, and continuing to engage with patients, communities, healthcare professionals and partner organisations as we develop the study.

Reports and resources

Literature review

Before the engagement programme began, Genomics England commissioned a literature review of the existing evidence on public and healthcare professional perspectives on population-level genomic testing. This review helped identify where evidence already existed, where important gaps in understanding remained, and informed the design of the engagement programme. A summary report is also available to download.

Overarching report

This report brings together findings from all three engagement strands and the sense-making workshop, highlighting the key themes, areas of consensus and implications for the future study and wider use of genomics in healthcare. A summary report is also available to download.

Public dialogue report

This report presents findings from a public dialogue involving people broadly reflective of England’s population, exploring views on personalised medicines, health risk information, genomic data use and participation in genomic research.

Inclusive community engagement report

This report shares perspectives from ethnically diverse and underrepresented communities in Bradford, Birmingham and East London, exploring trust, inclusion, data use, consent and access to genomics in healthcare.

Healthcare professional engagement report

This report presents views from healthcare professionals on the opportunities and challenges of using genomics in routine care, including workforce readiness, training, equity and implementation.

A technical appendix of reports is available on request. Please contact [email protected] for more information.

Acknowledgements

We would like to thank everyone who contributed their time, experience and expertise to this programme, including members of the public, community organisations, healthcare professionals, the Participant Panel at Genomics England, the Oversight Group and our delivery partners, Hopkins Van Mil, RAND Europe, The Social Agency, People Street, The Leap and Fava Health.