Patients missing out on world leading UK genomic capabilities

The UK is a world leader in genomics, but this position could soon be undermined if UK patients cannot benefit from the nation’s genomics expertise, according to a report published today by the Association of the British Pharmaceutical Industry (ABPI).

The report, ‘Harnessing the UK’s genomics expertise to improve patient outcomes,’ outlines how the NHS and Pharmaceutical sector can work together to bring patients the latest genomic treatments and provide the best care possible.

Genomics is the study of genomes - the complete set of genetic information contained within each individual and the way it influences how the body works. This is a crucial part of understanding how disease develops, and how to treat it.

The UK is home to over 140 genomics companies which generate £2.4bn for the UK economy. This strong expertise in genomic research has been built up in recent years, supported by initiatives like the 100,000 Genomes Project, the UK Biobank, and the COVID-19 Genomics UK Consortium which formed the vast diagnostic network for COVID-19 Polymerase Chain Reaction (PCR) testing.

However, the UK is failing to capitalise on these strengths to realise the economic and health potential of a thriving genomics ecosystem, trailing behind other European countries in deploying its hard-won expertise to benefit patients. For example;

• babies are only tested for nine conditions in the UK, compared to European counterparts such as Italy, Iceland, and Poland, which screen for up to four times as many conditions [1]
• the UK is slower than the EU average for turnaround times in commonly used biomarker tests for non-small cell lung cancer and colorectal cancer [2]
• UK access to single biomarker tests is lower than in Sweden, Finland, France, Germany and Austria [2]

The UK Government and NHS England’s genomics strategies are important steps towards improving the use of genomic medicine to deliver real improvements in patient care. But for these to be successful, we need to see progress in tackling persistent problems such as poor geographic consistency in patient access to genomic testing, outdated administration of testing and reporting results, availability of tests outside of specialist centres, and a shortage of trained staff.

To address these issues, the ABPI’s report identifies how the sector needs to strengthen partnerships between Government, industry and the NHS to unlock the potential of genomics for research and make sure patients get access to genomic testing.

ABPI Chief Executive, Richard Torbett said:

“The UK has consistently demonstrated its proficiency in genomics and has solidified its position as a leader in the field for many years.

“Though industry is already working with the NHS to increase access to genomic medicine, more needs to be done to ensure the very best patient outcomes.

“Our recommendations are intended to help the Government, the NHS and the science community work more effectively to help patients feel the benefits of the UK’s world-leading genomics capability.”

To go further and faster in accelerating the benefits from genomics, the report makes the following recommendations on improving and expanding the genomic medicine services across the four UK nations to deliver the best patient care and ensure that genomic data can be used to better understand disease, guide treatment and research the next generation of medicines:

Recommendations

Genomic testing

To deliver better patient care, genomic medicine services across the four UK nations should standardise processes, referral pathways and timelines for genomic testing, ensuring testing is delivered in clinically relevant timelines. Progress should be tracked via the publication of annual reports on performance metrics and user feedback from healthcare professionals, industry, patients and their families.

Workforce

To build genomic medicine services that can maximise patient access, it is vital that the health systems in all four UK nations incorporate the needs of the genomic workforce into their long-term strategic workforce planning, ensuring there is a recruitment, retention and development strategy to grow the genomic medicine service workforce. In support, UKRI should work with industry partners across research councils to establish an education and training programme for PhD students and post-doctorates which supports upskilling in translational genomic research approaches.

Data

Ensuring interoperability and connectivity between flagship research programmes and across genomic and health data assets is key to enabling genomics research. The UK government and the NHS should drive this by fully delivering the Data Saves Lives strategy and the Accelerating Genomic Medicine in the NHS strategy, to ensure that datasets can be used to discover new medicines and develop them in clinical trials.

Partnerships

MRC-UKRI should partner with industry, academia and charities to scope and deliver the UK Functional Genomics initiative, ensuring that public funding is used to create a globally competitive offer that leverages further industry investment and partnership for researching ground-breaking new approaches to improve our understanding of how genetic changes cause disease.

The healthcare systems in all four UK nations should work with industry and regulators to enhance the current horizon scanning function for genomic advances and technologies, to ensure the genomics medicine services adopt new innovations, in line with global trends.

Read the full report.