Clinicians can notify relatives of genetic risk with patient consent, confirms privacy regulator

Privacy regulator confirms clinicians may contact relatives about genetic risk with Patient Consent

Australia’s national privacy regulator has clarified that clinicians may legally contact a patient’s relatives about inherited genetic risk — with patient consent — without breaching privacy laws.
This updated guidance from the Office of the Australian Information Commissioner (OAIC) marks a pivotal step toward improving preventive genetic healthcare and providing legal clarity to clinicians.

The confirmation follows the publication of a new paper by Dr Jane Tiller, public health genomics expert and legal adviser at Monash University, in the Medical Journal of Australia (MJA). Dr Tiller emphasizes that notifying at-risk relatives is critical for preventing serious conditions like hereditary cancers and heart disease.

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“Individuals cannot make informed decisions about whether to have genetic testing if they are not aware of their possible risk,” said Dr Tiller.

Legal clarity for clinicians

While the Privacy Act 1988 (Cth) has long allowed clinicians to share health information with family members with consent, many health professionals have hesitated due to privacy concerns. The OAIC’s May 2025 update to its Guide to Health Privacy now confirms that:

• Clinicians may collect a relative’s contact details from a consenting patient
• They can contact those relatives directly to inform them of potential genetic risks

This discretion primarily applies to clinicians under Commonwealth law, including those in private practice. However, Dr Tiller notes that her analysis of State and Territory privacy laws shows similar provisions exist, and she encourages regional regulators to follow the OAIC’s lead for full national alignment.

“This confirmation is incredibly useful for clinicians, who will now have the confidence and clarity to use their discretion when helping patients communicate genetic risk information to their families,” Dr Tiller said.

Backing from the genetics and health community

The new guidance has been widely welcomed across Australia’s health genomics landscape:

• Professor Virginia Barbour, Editor-in-Chief of the MJA, said the journal is proud to publish this timely paper that addresses long-standing confusion in the medical field.
• Tiffany Boughtwood, Australia’s newly appointed Health Genomics Commissioner, endorsed the guidance as vital to advancing genomics-informed healthcare.
• Julia Mansour, CEO of the Human Genetics Society of Australasia (HGSA), called the OAIC clarification a significant step toward improved preventive care for families.

This legal update aligns with broader initiatives like the DNA Screen program led by Dr Tiller’s team, which offers secure, free genetic testing to the Australian population to detect risk factors for preventable genetic diseases.

The way forward

With national confirmation in place, experts now call on State and Territory privacy regulators to provide matching guidance. This will give all clinicians — whether in public or private settings — complete clarity and legal confidence to notify families at risk.

“This is not just about compliance — it’s about saving lives,” said Dr Tiller, who brings a unique perspective as both a lawyer and a genetic counsellor.

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