There is currently no established role for genetic testing for most head and neck cancers.

Nasopharyngeal carcinoma has a higher incidence in people of Chinese or Southern European background, but there is no genetic test to identify specific individuals at risk.

More than a third (35–40 per cent) of paragangliomas (PG) occur due to an underlying hereditary PG or phaeochromocytoma syndrome. When tissue is available for a pathological examination, PG patients should be screened for an underlying SDH mutation (Hampel et al. 2015), performed by pathology or requested by a familial cancer centre. Genetic testing at a familial cancer centre is also indicated of people with a family history of PG/phaeochromocytoma, young-age onset, multiple PG or rare associated features.

Medicare funds some genetic tests via a Medicare Benefits Schedule (MBS) item number but most are not. Depending on the personal and family history, the relevant state health system may fund public sector genetic testing.

Pre-test counselling and informed consent is required before any genetic testing. In some states the treating team can offer ‘mainstream’ diagnostic genetic testing, after which referral is made to a familial cancer service if a pathogenic gene variant is identified. The familial cancer service can provide risk management advice, facilitate family risk notification and arrange predictive genetic testing for the family.

Visit the Centre for Genetics Education website for basic information about cancer in a family.