Genomics, Healthcare and You engagement programme launched to shape future adult genomics study

Genomics England has launched a nationwide engagement programme to inform the design of a new research study that will explore how genomics could be used in routine, preventative healthcare for adults.  

Named “Genomics, Healthcare and You,” this engagement programme will mark the first step towards a national research study.  As announced in the 10 Year Health Plan for England and Life Sciences Sector Plan earlier this year, the study will sequence the genomes of 150,000 adults to harness the potential of genomics in preventative care.  

The study will aim to build evidence and digital infrastructure to position the UK as the leader in genomics-enabled prevention and diagnostics.  

Genomics, Healthcare and You, running through 2025/26, will gather insights from people within society, underrepresented communities and healthcare professionals, to ensure the future study is shaped by diverse perspectives and public expectations.  

By engaging with these communities and professionals, Genomics England aims to ensure the study is robust, inclusive, and responsive to the needs of everyone involved, while reflecting Genomics England’s commitment to equity and engagement. 

The work is being delivered in partnership with Hopkins Van Mil, RAND Europe, The Social Agency, People Street, and The Leap - organisations selected through a competitive tendering process for their expertise in inclusive engagement. 

What the engagement programme will explore 

This engagement programme will explore people’s attitudes towards offering genomic testing to adults without a known, genetically caused or influenced condition.  

It will use a range of scenarios to test people’s perspectives on receiving the results of any genomic testing. These include understanding how a person might respond to medicines (pharmacogenomics) and results related to a person’s risks of common conditions.  

The programme will also explore attitudes towards reuse of genomic information for health purposes over time, and communicating emerging findings from research.  

The engagement has started with a short survey to get initial insights from a range of healthcare professionals, which will help shape the design of engagement workshops with the community. Further deliberative workshops with a representative sample of the public in two locations in England will also be arranged, as well as immersive activities and workshops to engage under-represented communities.  

Findings from the engagement will be published on the Genomics England website and will inform the design and delivery of the future research study. Genomics England will continue to lead wider ongoing engagement throughout the development of the study as it progresses.