Amelia Jones | 28/07/2026
The key message: more genomic information does not always mean more certainty.
Charlotte Fleming, Market Access Consultant at HEOR, attended the Genomics England Research Summit 2026. This is the third blog in a three-part series exploring what the summit revealed about the future of genomics-enabled healthcare and what it means for evidence generation and market access.
While much of the summit focused on technological advances, two sessions highlighted the human side of genomic medicine.
Research into intermediate-allele carriers of polyglutamine repeat disorders demonstrated the challenges of communicating risk when the relationship between genetic findings and future disease remains uncertain. Meanwhile, findings from the GenROC study showed that patient and parent-reported experiences can reveal aspects of disease that are not always captured through clinical assessment alone.
Together, these sessions highlighted an often-overlooked reality: generating genomic data is only part of the challenge. Understanding what that information means for patients and families is equally important.
As genomic testing becomes more widespread, healthcare systems will increasingly need to support individuals who receive uncertain, unexpected or difficult-to-interpret results. This places growing importance on genetic counselling, patient communication and the design of clear follow-up pathways.
The discussions also emphasised the importance of trust. As genomic databases continue to grow, their long-term value will depend on maintaining public confidence in how data is stored, accessed and used.
For researchers and manufacturers alike, involving patients earlier in study design may help ensure that evidence generation reflects outcomes that matter most to patients, rather than solely those that are easiest to measure.
Bottom line: the future of genomic medicine will be shaped not just by the data we generate, but by how well we help patients understand and benefit from it.