New study warns about unequal access to molecular and genetic testing and the impact on treatment for patients

14 November 2025 | Campaigning and research, News, Support, Treatments

Bristol-based neuropathologist Professor Kathreena Kurian, who lost her husband Gerard to a brain tumour, is leading a national campaign to end postcode inequalities in brain tumour care with a newly released study into molecular and genetic testing of brain tumour patients.

Professor Kurian from the University of Bristol and North Bristol NHS Trust conducted the study in collaboration with the Tessa Jowell Brain Cancer Mission, a national convening body of cancer charities, the Department of Health and Social Care and 47 NHS hospitals, committed to promoting equitable access to brain tumour care.

Molecular and genetic testing has become a game-changer in brain tumour care — shaping diagnosis, guiding treatments and opening doors to new therapies. The study’s findings, published in Neuro-Oncology Practice on 13 November 2025, show these tests are now rapidly being adopted across the NHS and mark long-awaited progress in a field that has seen few new treatments in over two decades.

However, the study also exposes deep regional inequalities, with some hospitals hampered by transport and processing delays, and others lacking the means to freeze tumour samples after surgery — a basic requirement for advanced testing.

Talking also from her deeply personal experience, Professor Kurian explained,

“My husband, Gerard, was able to access cutting-edge treatment through a trial at the Royal Marsden. This was only possible because his tumour was frozen and underwent whole genome sequencing. The genetic data revealed a match with a new trial, and Gerard was able to have precious extra time with us as a result.

“Unfortunately, not all patients are given that same opportunity – often unaware that something as simple as how tissue is stored can determine what treatments or trials they might later access. It is my mission to change this.”

Using data collected as part of the Tessa Jowell Centre of Excellence from NHS centres covering 84% of the UK population, the research team found that although genomic testing has expanded rapidly – with a 291% increase in whole genome sequencing (WGS) since 2021 – many services are struggling to keep pace.

Two key findings include:

• Tissue is not being frozen for many patients, blocking access to sequencing and clinical trials.
• By 2024, only 71% of centres offered WGS, with particularly limited access in Scotland and Wales. In some cases, patients wait up to 150 days for results.

As well as the need for equitable investment and adoption of innovations highlighted by the study, Professor Kurian sets out three practical steps that can be taken to achieve equity of access:

• Talk About It: Greater awareness that patients can decide whether their tumour tissue is used for advanced diagnosis, future treatments and research — one conversation could help save lives.
• Protect What Matters: A simple Patient Tissue Charter that clearly articulates patients’ rights, ensuring that every tumour sample in the UK is properly preserved and used to help both current and future patients.
• Make It Easy: Consent should be simple — one tap on the NHS App to give permission and power to patients.

Acknowledging the important insights of the study, Brain Tumour Support’s Head of Support Services, Lucy Wilkinson, expressed how making progress in this area is so crucial for patients:

“We are deeply concerned about the continuing inequality of access to tumour freezing and genetic testing for people with brain tumours. These vital procedures can provide patients and their families with crucial information about treatment options, prognosis, and future care. Yet, we continue to see postcode-based disparities, where access depends more on where someone lives than on clinical need. This inequity not only affects medical outcomes but also places additional emotional and financial strain on patients and families already coping with a devastating diagnosis.

“We urgently need a consistent, national approach to ensure that every patient, regardless of their postcode, has equal access to the same standard of diagnostic and treatment opportunities.”

The study was possible thanks to the dedicated efforts of the 21 NHS teams who provided data, the Centre of Excellence committee and through the funding and support of the Tessa Jowell Brain Cancer Mission’s partners.

Kathreena Kurian, Professor of Neuropathology and Head of the Brain Tumour Research Centre at the University of Bristol and Consultant Neuropathologist at North Bristol NHS Trust, is funded by CRUK, Innovate UK, University of Bristol Alumni and Friends, and Southmead Hospital Charity.

The full paper can be read here.