A workshop event, organised by the CRUK Cambridge Centre Paediatric Cancer Programme, University of Cambridge Department of Paediatrics, NHS East Genomics, Wellcome Sanger Institute and Wellcome Connecting Science has led to an important series of recommendations for improving equity of access to whole genome sequencing (WGS) for children with cancer across the UK.
Whole genome sequencing (WGS) was commissioned by NHS England in England in 2021, but by 2022 the paediatric oncology community recognised that some geographical locations appeared able to access WGS testing more readily than others.
In order to establish some of the reasons behind this, a workshop event led by the CRUK Cambridge Centre Paediatric Cancer Programme, the University of Cambridge Dept of Paediatrics, NHS East Genomics, Wellcome Sanger Institute and Wellcome Connecting Science was organised in Oct 2022 to bring together clinicians and scientists from across the UK.
The results of the workshop, published in BMC Medical Education, highlight some key education and training targets to support uptake and successful implementation of WGS across the UK.
These include training for healthcare professionals in better understanding the process of requesting WGS in different NHS Trusts, as well as raising awareness that this tool is valuable for clinical management and treatment approaches as well as for research. There is also a need for training around the consent information needed, the subsequent potential to identify inherited variants and the best ways to communicate results to children and families.
Key training opportunities identified for clinical scientists included better understanding of how to identify potential opportunities for clinical trials, as well as better understanding of WGS for all healthcare professionals involved in Genomic Tumour Advisory Boards (GTABs).
Since the workshop, the Cancer Genomic Improvement Programme (CGIP) has been established, and funded by the NHS England Cancer Programme in 24-25, to tackle the end-to-end turnaround times approved for a series of solid tumours and haemato-oncology during 2023. Cancer Research UK also recently launched it’s new genomics policy position statement.
Dr Michelle Bishop, Associate Director for Learning and Training at Wellcome Connecting Science, who led the workshop and is first author on the paper said:
"We designed the workshop to uncover a broad spectrum of implementation barriers, using the COM-B model to pinpoint the key factors essential for driving effective behaviour change—in this case, the adoption of whole genome sequencing (WGS). By framing the interactive sessions around targeted questions from the COM-B framework, we identified where education and training could deliver the greatest impact".
Prof Matthew Murray, University Professor and Honorary Consultant Paediatric Oncologist at Cambridge University Hospitals Trust, who co-devised the workshop said:
“The workshop provided a key opportunity to bring together health professionals and scientists, and to better understand the barriers to WGS uptake".
WGS is a vital tool that can be used to better manage children with cancer. We hope the recommendations outlined in this paper can be taken forward to allow better access for all children across the UK”.
Prof Matthew Murray
Dr Sarah Bowdin, Medical Director at the East Genomic Laboratory Hub said,
“The East Genomic Laboratory Hub, commissioned to provide WGS testing by NHSE according to the National Genomic Test Directory, recognise the huge importance of working with our colleagues in paediatric oncology and haemato-oncology to establish clinically useful pathways. The East GLH team of Clinical Scientists have gained extensive experience of analysing and reporting paediatric cancer whole genomes, and are always keen to support the diffusion of knowledge across the national Genomic Medicine Service.
This workshop provided an excellent opportunity for knowledge transfer and establishing new training opportunities, ultimately with the aim of supporting equitable access to WGS for all children diagnosed with cancer in the English NHS.
- Reference: Bishop, M., Vedi, A., Bowdin, S. et al. Identifying barriers and opportunities to facilitate the uptake of whole genome sequencing in paediatric haematology and oncology practice. BMC Med Educ 24, 1273 (2024). https://doi.org/10.1186/s12909-024-06219-y (opens in a new tab)
- NHSE Cancer Genomics Improvement Programme (CGIP)
- CRUK genomics policy position statement (opens in a new tab)