Australian Adaptation of Resources to Communicate Hereditary Cancer Risk With Family Members

Communicating genetic test results within families can facilitate cascade testing that informs cancer prevention and surveillance. Researchers at the University of Washington, USA, developed a public website called ConnectMyVariant to support family communication of genetic test results. Australian families share similar challenges communicating genetic information.

To explore the acceptability of ConnectMyVariant resources, identify content requiring adaptation, and need for further resources.

Semi-structured interviews were conducted across three stages to review the ConnectMyVariant resources, assess relevance and acceptability for Australians, and identify need for adaptation. Stages 1 and 2 involved individuals with an identified hereditary cancer variant and their relatives. Stage 3 involved genetic counsellors. Resource content was revised between stages based on interview findings. Content analysis was used to analyse the interviews.

Stage 1 interviews (n = 31) highlighted the value of the resources but identified changes needed to make them suitable for an Australian context. Adaptations included adding ethics and consent around risk communication, reducing communicator burden, simplifying and softening language, incorporating local support services and genetic testing processes, including implications on life insurance. Stage 2 interviews (n = 6) confirmed the adaptations were acceptable. In stage 3 interviews (n = 7), genetic counsellors recognised the need for a communication resource and recommended minor changes to reflect local genetic testing processes, clinical language, and service preferences.

This study demonstrates there is value in a communication resource for Australian families, and highlights the importance of undertaking cultural adaptation of resources. The authors are actively disseminating resources across community and clinical settings.