Risk communication with patients undertaking testing for BRCA genes

Principal Investigator: Dr Alexandra Freeman, Winton Centre for Risk & Evidence Communication, DPMMS
Co- Investigator: Dr Gabriel Recchia, Winton Centre for Risk & Evidence Communication, DPMMS

Funded by: Cancer Research UK Cambridge Centre Early Detection Programme Pump Priming Awards 2019

One of the great problems of early cancer detection is how to detect (and hence treat) only the cancers that would go on to be symptomatic and not over-diagnose. Risk stratification - identifying people who have a higher than average risk of developing a symptomatic cancer – is at the moment the best way to minimise this and is currently (and increasingly) being done through genetic/genomic testing. It is vital that the results of genetic testing are acted on appropriately. Patients need to understand exactly what such test results do and do not mean, and what their options are in the face of them.

With increased testing for cancer-related gene variants such as BRCA as part of cancer risk stratification it is vital that the science of communicating the findings keeps pace with the science of identifying the findings. Without understanding their results, patients (and their clinicians) are unable to make informed healthcare choices. The aim of this project is to identify numbers, words and graphics that can be used to help patients understand their cancer risk and medical options on receiving a BRCA gene test result (either positive or negative). To do this, we will be building on our previous work to develop standardised genetic report forms to communicate carrier testing results, and using both qualitative and quantitative methods.