Doctors cleared to notify on genetic risk, yet insurance discrimination ban lags

Australia’s national privacy regulator has formally clarified that clinicians can contact a patient’s relatives about potential inherited genetic risks, with the patient’s consent and without breaching privacy laws.

The confirmation, issued by the Office of the Australian Information Commissioner (OAIC), offers long-awaited reassurance for clinicians navigating the ethical and legal grey zones of genomics-informed care.

Dr Jane Tiller, Monash University Public Health Genomics Ethical, Legal & Social Adviser, was behind the new guidance from the OAIC. A longstanding advocate for banning genetic discrimination in life insurance, Dr Tiller welcomed the move, though there is unfinished business that needs urgent attention.

While the Labor government promised to legislate against genetic discrimination last year, the reform dropped off the agenda amid pre-election campaigning. With former minister Stephen Jones having since retired, responsibility now lies with newly appointed Assistant Treasurer, Dr Daniel Mulino.

Dr Tiller highlighted the importance of notifying relatives at risk of genetic conditions, such as some cancers or heart disease.

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

“But doctors worry about the privacy implications of helping patients notify their relatives by contacting them directly. Even though this discretion has been available to them for many years under the Privacy Act 1988 (Cth), many clinicians remain unclear about when and how they can act – even when patients consent and provide their relatives’ contact details.”

Dr Tiller formally approached the OAIC last year seeking clarification on the Privacy Act. In response, the OAIC updated its Guide to health privacy in May 2025, confirming that clinicians may collect family contact details from a consenting patient and use them to inform at-risk relatives.

“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.

The clarification applies to clinicians governed by the Commonwealth Privacy Act, primarily those in private practice. For those working in public hospitals and other state-funded services, additional layers of State and Territory legislation also come into play.

“I have previously published an analysis of all the State and Territory privacy regulations, and in my view all of them contain provisions that work the same way as the Commonwealth law,” explained Dr Tiller. “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.”

Tiffany Boughtwood, recently appointed as Australia’s first Health Genomics Commissioner with Genomics Australia, praised the guidance for strengthening frontline care.

“Providing clarity about contacting at-risk relatives will support the health workforce to deliver high-quality, appropriate genomics-informed health care. I look forward to working with my state and territory counterparts on better integrating genomics in the health system, including any opportunities to build on this guidance in public health settings.”

Human Genetics Society of Australasia (HGSA) CEO, Julia Mansour, also welcomed the OAIC’s direction.

“It’s great to have this guidance from the OAIC. It will strengthen the role of clinicians in supporting family communication about genetic risk and ultimately improve access to preventive care for at-risk individuals.”

This update is part of a broader national push to close gaps in access to potentially life-saving genetic information. Monash University’s Public Health Genomics team, led in part by Dr Tiller, is behind the DNA Screen program – a public health pilot offering free, secure DNA testing to Australians to detect inherited risks for conditions such as cancer and heart disease that can be treated or prevented.

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