Genomic testing is the analysis of a person’s DNA to identify genetic differences that may contribute to a disease. Evidence shows that for sarcoma patients, genomic testing can be beneficial in confirming diagnosis, providing a more accurate diagnosis, and identifying personalised treatment options.
Since the launch of the NHS Genomic Medicine Service, genomic testing should now be offered as part of the normal diagnostic process to all patients who may have sarcoma. However, there is huge variability in access to genomic testing, with many patients having never heard of genomic testing, nor been offered it prior to or following a sarcoma diagnosis.
In this report, Sarcoma UK has gathered evidence from patients, Specialist Sarcoma Centres and Health Departments to provide a clear picture of current provision of genomic testing to sarcoma patients across the UK. The report lays out the current state of testing in the UK, followed by recommendations and the next steps needed to create full and equitable access to genomic testing for sarcoma patients across the UK.
Our report makes the following recommendations:
- Awareness should be raised about genomic testing and its benefits for sarcoma patients.
- Healthcare professionals should be better trained, to ensure the NHS workforce is fully equipped to deliver genomic testing to sarcoma patients.
- Each sarcoma specialist centre should have a dedicated genomics specialist or genetic counsellor.
- Standardisation and coordination should be implemented across the UK to address health inequalities and reduce variation in access.
- Funding for genomic testing should be increased to provide the necessary infrastructure.
- NHS England and Genomics England should update rules on data sharing.
