A new report by University of Bristol researchers shows that access to genomic testing for brain tumor patients is unfair, with fewer than 5% of eligible adults receiving specific tests.
Led by the Tessa Jowell Brain Cancer Mission, the report emphasizes the importance of genomic testing, which can find mutations and help patients join clinical trials. About 12,700 people in the UK are diagnosed with brain tumors each year.
A Tessa Jowell Brain Cancer Mission team studied the use of whole genome sequencing (WGS) for brain tumor patients across the UK and found that less than 5% of adults accessed WGS in 2023, with notable regional disparities. Challenges include long test times, paperwork, and difficulties in interpreting results.
The report notes that Scotland, Wales, and Northern Ireland are further behind than England, calling for action to improve access. Given the short survival time, patients are frustrated by the gap between availability and access.
The report highlights that some hospitals successfully deliver whole genome sequencing (WGS) for brain tumor patients. These successes are due to strong leadership and access to relevant clinical trials. Dr. Nicky Huskens from TJBCM notes that while initial results were disappointing, recent trends are positive.
The report recommends six actions to improve WGS access, including funding for coordinators, training, and creating a national board for precision medicine. These steps are expected to have low additional costs.
Professor Kathreena Kurian, the report’s lead author, is personally invested in increasing WGS access. Her husband, Gerard, received rapid WGS testing and joined a promising trial, which gave him an extra year of good quality life.
Kurian notes that while not all patients currently have fast access to WGS, the report provides clear recommendations for improvement, and she is hopeful that all UK brain tumor patients will eventually benefit.
The TJBCM is urging NHS leaders, professionals, Genomics England, and brain cancer charities to collaborate on the report’s recommendations, and they are ready to assist. Professor Richard Gilbertson said that the issues in the report also affect other cancers. They hope to help patients with different conditions by improving genomic testing for brain tumors.