At this year’s Scottish Cancer Conference, TJBCM co-hosted a panel looking at the barriers Scottish patients face in accessing genomics.
Leading clinicians, patient representatives and national cancer charities came together at yesterday’s Scottish Cancer Conference (organised by Cancer Research UK) to call for urgent action on bringing genomic testing to every cancer patient in Scotland.
During the session — “Closing the Gap: Bringing Cancer Genomic Testing to Scottish Patients”, which took place on Monday 10th November in Glasgow’s University of Strathclyde, cancer experts, patients and policymakers highlighted that while advances in genomic testing are transforming cancer care, patients in Scotland are being left behind.
Organised by Tessa Jowell Brain Cancer Mission, with leadership from Brain Tumour Research, brainstrust, The Brain Tumour Charity, Bowel Cancer UK and Cancer Research UK, the panel brought together experts from across clinical practice and health policy — as well as the patient voice.
Scotland falling behind in the genomic era
Genomic testing in cancer helps identify at-risk patients, guide diagnosis and treatment, and open access to precision medicines and clinical trials. Yet, as set out in the Tessa Jowell Brain Cancer Mission’s report “Closing the Gap”, Scottish patients continue to lack access to genomics services available in other parts of the UK and Europe. This leaves patients waiting longer for care decisions, receiving less precise treatments and missing out on the hope provided by clinical trials.
Dr Sarah Kingdon, Tessa Jowell Neuro-Oncology Fellow in Edinburgh and Glasgow and Chair of the session, said:
“Genomics is integral to modern cancer care, and Scotland has the scientific expertise and infrastructure to be at the forefront of this. The challenge is ensuring that these strengths translate into real benefits for patients, through wider access to precision medicine and participation in genomic-driven clinical trials. This panel will explore how we can work together to ensure Scotland’s full potential is met.”
Nicky Huskens, CEO of the Tessa Jowell Brain Cancer Mission, said:
“Genomics is unlocking new opportunities for patients with cancer, but Scottish patients aren’t yet able to take full advantage. Yesterday’s panel reflected the opportunity for Scotland to not just catch up but lead Europe in providing precision medicine opportunities to patients.”
Clinical and patient voices calling for equity
Panellists included Dr Faye Robertson (Consultant Clinical Oncologist), Prof Willie Stewart (Consultant Neuropathologist), Dr Sally Clive (Consultant Medical Oncologist), Dr Lisa Wilde (Director of Research, Policy & Influencing, Bowel Cancer UK), and Finlay Carson MSP — alongside Mr Duncan Campbell, father of one of the first Scottish patients to receive whole genome sequencing for a brain tumour.
Mr Campbell said:
“You just can’t have a proper discussion with any expert unless you have genomics. It must become a standard of care for the NHS, like CT and MRI. Without genomics you have a picture of cells gone wrong rather than knowing what went wrong with the cells and so guide for options.”
Dr Faye Robertson, who is leading research on developing genetic therapies for patients with a brain tumour added:
“Whole genome sequencing is changing the outlook for treatment of many cancers, unlocking the promises of precision treatment — yet in Scotland, our patients are still waiting. We have the skills to deliver this, but we need investment and commitment from policy-makers.”
About the session
Closing the Gap: Bringing Cancer Genomic Testing to Scottish Patients
Monday 10th November | 1:40–2:40pm | Scottish Cancer Conference
Organised by the Tessa Jowell Brain Cancer Mission, Brain Tumour Research, brainstrust, and The Brain Tumour Charity, with support from Bowel Cancer UK and Cancer Research UK.
The discussion will explore how Scotland can build a flexible, sustainable and equitable genomics service — and the policy actions needed from the next Scottish Government to make that vision a reality.
About the Tessa Jowell Brain Cancer Mission
The Tessa Jowell Brain Cancer Mission (TJBCM) is a national convening body of 15 member organisations delivering transformative programmes to improve brain tumour research, treatment and care in the UK. Working through eight innovative programmes, the Mission focuses on accelerating research, advancing precision medicine, improving equity of care and connecting and training NHS staff. Its work is funded and supported by the government through the National Institute for Health and Care Research, as well as eleven charities. Hundreds of NHS doctors, nurses, allied health professionals and scientists from across the UK work daily with the Mission to design and deliver its programmes in partnership with these organisations.
The Tessa Jowell Brain Cancer Mission’s partners: ACT for Cancer; Brain Tumour Research; The Brain Tumour Charity; Brain Tumour Support; brainstrust; Brainwaves NI; Cancer Research UK (CRUK); Cancer Research Wales; Ymchwil Canser Cymru; Children with Cancer UK; Great Ormond Street Hospital Charity; Tessa Jowell Foundation; National Institute for Health and Care Research (NIHR).
What is whole genome sequencing (WGS)?
Whole genome sequencing (often shortened to WGS) is a type of genomic test that looks at the DNA in a brain tumour, using a sample taken during operation (if patients can have surgery). The tumour DNA is compared with DNA taken from a blood sample, to identify any changes (sometimes called mutations) in the tumour’s DNA sequence. WGS is the most comprehensive form of genomic testing that is currently available and looks at the entire genome. A genome is the complete set of DNA that makes up our bodies.
The results from WGS testing may be used for some or all the following:
- To further refine diagnosis (specific type of tumour) and prognosis (how the tumour might behave in the future).
- To provide additional information about which treatments may be the most effective for the patient and their tumour.
- To identify if patients might be eligible for certain clinical trials, for example ones that use drugs that target a particular tumour mutation.
- To provide information on any inherited risk related to the cancer, and whether family members may be at increased risk.
- To help researchers understand more about brain tumours, which could help patients in the future.
WGS testing gives a patient’s medical team more information about their tumour which could be (but not always) used to help them personalise care.
Further information on WGS can be found here.
