Scottish cancer patients being 'left behind' over genomic testing gap
Policymakers urged to deliver‘investment’ and ‘commitment’
Clinicians and charities have warned that cancer patients in Scotland are being “left behind” due to a lack of cutting edge genomic testing.
The group of experts told the Scottish Cancer Conference that patients are being forced to wait longer for care decisions and are receiving less precise treatment options as a result of the shortfall in genomics services available in other countries.
One leading cancer specialist said that while Scotland had the skills to deliver the sequencing work to help patients, there was a need for “investment” and “commitment” from policymakers to make such a step possible.
Genomic testing can pinpoint which treatments are most likely to work for each patient and open doors to precision medicine and cutting-edge research, particularly in the field of brain tumours.
The process, known as whole genomic sequencing, compares the DNA in a brain tumour sample with the DNA in a blood sample to identify any mutations. The results can not only help provide information about which treatments may be the most effective, but can let members of a patient’s family know of any inherited risk related to the cancer.
The Tessa Jowell Brain Cancer Mission, which organised the conference session, published a report last year which pointed out that, unlike England, there are no commissioned whole genome sequencing services in Scotland, Wales, or Northern Ireland.
It urged policymakers to establish funded pathways to ensure patients in those nations are given access to the same genomic tests that are available south of the border, with whole genomic sequencing seen as especially important. It is the most comprehensive form of genomic testing that is currently available and looks at the entire genome - the complete set of DNA that makes up our bodies.
Dr Sarah Kingdon, the Tessa Jowell neuro-oncology clinical fellow at the Beatson cancer centre in Glasgow and the Edinburgh Cancer Centre, where she specialises in neuro-oncology, said there was no reason why Scotland could not play a leading part in the use of genomic testing in cancer.
She 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.”
Dr Faye Robertson, a consultant clinical oncologist and honorary clinical senior lecturer at the University of Edinburgh, said: “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 policymakers.”
Nicky Huskens, CEO of the Tessa Jowell Brain Cancer Mission, a national convening body of 15 member organisations delivering transformative programmes to improve brain tumour research, said the session during Monday’s conference underlined the need for Scotland to improve its offering.
“Genomics is unlocking new opportunities for patients with cancer, but Scottish patients aren’t yet able to take full advantage,” she explained. “Yesterday’s panel reflected the opportunity for Scotland to not just catch up but lead Europe in providing precision medicine opportunities to patients.”
Others taking part in the event included patient representatives with lived experience of genomic testing. They included Duncan Campbell, whose son was diagnosed with a brain tumour in 2021.
He worked with clinicians across Scotland and internationally to get access to whole genome sequencing for his son, with the family paying privately to have the service carried out at a hospital in San Francisco to get his genome sequenced.
Mr Campbell, a maxillofacial consultant, described genomics as “essential” if patients and their relatives wish to explore options with experts, and said he hoped others would be able to have the choice of having genomic testing carried out going forward.
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He 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.”
Cancer charities also in attendance at the session, entitled ‘Closing the Gap: Bringing Cancer Genomic Testing to Scottish Patients’, said it was crucial that the genomic testing services were made available in Scotland, pointing out that there are no technological barriers to doing so.
Dan Knowles, chief executive at Brain Tumour Research, said: “Brain tumour patients in Scotland are potentially being denied access to clinical trials due to a lack of routine testing.
“We are calling on the Scottish Government to ensure that 100 per cent of brain tumour patients in Scotland are offered genome sequencing. The technology is there - let’s use it to make a difference. Together we can find a cure.”
The Scottish Government’s current genomic medicine strategy, which runs until 2029, promises to deliver a “broader range” of testing technologies across cancer and rare inherited conditions, and determine the “most cost effective way of doing so.”
It states that this will include the analysis of circulating tumour DNA and large panel next generation sequencing for cancer and whole genome sequencing where these technologies will “deliver clinical benefit.”
The strategy adds: “Key to the delivery of these technologies will be collaborative working with clinical teams, service users and academic, industry and third sector partnerships.”
A Scottish Government spokesperson said: “We are improving the diagnosis and targeted treatment of disease through continued investment in genomics and recognise the importance of this testing for every patient with cancer.
“We have funded an enhanced genomic testing care pathway for brain and central nervous system cancers and are supporting, in collaboration with the NHS and Oxford Nanopore Technologies, a long-read whole genome sequencing test to improve outcomes within the short turnarounds required by clinical teams.
“We are working closely with National Services Scotland to consider how we can best implement the full range of genomic testing needed.”
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