Summary
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.
Key findings
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. 1. 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. 2. 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. 3. 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. 4. 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. 5. 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.