Clarity on privacy in genetic testing

Clinicians now have clear advice on whether they can notify a patient’s relatives of possible genetic risks, following an update from the national privacy regulator.
 
A new paper published on Monday in the Medical Journal of Australia details the newly clarified privacy implications from the Office of the Australian Information Commissioner (OAIC).
 
It comes after the paper’s lead author, Monash University Public Health Genomics ethical, legal and social adviser Dr Jane Tiller, last year sought clarity from the OAIC on how the Privacy Act applies to clinicians who need to let a patient’s family members know about possible inherited genetic risks.
 
She said even though under the Commonwealth Privacy Act 1988 doctors have the discretion of helping patients notify their relatives by contacting them directly, they are still concerned about privacy implications.
 
The OAIC subsequently updated its Guide to health privacy in May 2025, to confirm clinicians can contact patients’ relatives, with patient consent, without breaching privacy laws.
 
The update includes hypothetical scenarios, and a decision flow chart to aid GPs in their decision making – including when patient consent is not given, such as when, for example, there is estrangement within the family.
 
‘You can disclose a patient’s genetic information to genetic relatives with or without the patient’s consent if a permitted situation exists,’ OAIC’s guidance says.
 
Dr Tiller said the OAIC’s clarification gives clinicians ‘the confidence and clarity to use their discretion when helping patients communicate genetic risk information to their families’.
 
‘The next step is for the state and territory privacy regulators to follow the OAIC in confirming this interpretation, to give clinicians complete clarity and confidence,’ she said.
 
‘I am so grateful for the OAIC’s responsiveness to the need for clarification in this rapidly evolving area.’
 
Dr Michael Tam, a member of the RACGP Expert Committee – Quality Care, said the guideline is now more explicit in how it is written, ‘which is always welcome’.
 
‘When rules are made, or a particular approach on what is permissible is very clear, I think that’s always a good thing,’ he told newsGP.
 
‘In general practice we end up seeing a bit of everything, so where rules are clearer, I think that’s quite helpful.’  
 
Some cascade testing, or screening, to at-risk relatives of a patient, is available under the Medicare Benefits Schedule if certain criteria are met, giving family members knowledge of an inherited genetic risk – and the opportunity to potentially mitigate that risk.
 
Cascade genetic testing of at-risk relatives 'can save lives', Dr Tiller wrote in her paper.
 
‘For younger relatives who can access preventive measures, ensuring they know about the availability of testing is particularly important,’ she said.
 
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