To ask the Secretary of State for Health, whether genetic centres are recording disease-specific data to ascertain whether a BRCA test has been referred from an ovarian or breast cancer diagnosis.
14 November 2016
In July 2015, NHS England published a clinical commissioning policy to guide and expand access to BRCA testing based on updated guidelines issued by the National Institute for Health and Care Excellence (NICE). The Clinical Commissioning Policy: Genetic Testing for BRCA 1 and BRCA 2 mutation, offers genetic testing to people with a 10% risk of carrying a BRCA mutation compared to the previously published 20% risk of carrying.
The recording of disease specific information is usually recorded in the patient notes and on the test request form, rather than in genetic centres, and in some cases may be recorded on the patient management database at an individual testing centre but is not aggregated up into disease specific data sets.
Data collection for BRCA 1 and 2 stopped in 2013 with the introduction of the Social Care Act and the restrictions on the collection and processing of personable identifiable data, however, NHS Digital (previously the Health and Social Care Information Centre) is now authorised to resume data collection on behalf of the UK Genetic Testing Network (UKGTN) for England. Data collection took place between June and July 2016 respectively for 2014/15 and 2015/16. The report is due to be available to UKGTN at the end of March 2017.
However, NHS England will explore data collection on testing for lynch syndrome with UKGTN as part of their work to look at options for implementation of Recommendation 36 of the independent Cancer Taskforce report.