Australia’s national privacy regulator has given the green light for clinicians to inform a patient’s relatives about potential inherited genetic risks, provided they have the patient’s consent.
This significant clarification, aimed at aiding preemptive healthcare measures, is expounded in a new paper by Dr Jane Tiller from Monash University, published in the Medical Journal of Australia (MJA).
This ruling allows medical professionals to communicate critical health information, which could potentially help in preventing diseases like certain cancers and heart diseases that have a genetic basis. Dr Tiller, who serves as the Public Health Genomics Ethical, Legal & Social Adviser at Monash, emphasised the benefit of such communication. She highlighted the dilemma clinicians face regarding privacy when considering directly contacting patients’ relatives, even with the necessary consent available to them under the Privacy Act 1988.
Dr Tiller sought input from the Office of the Australian Information Commissioner (OAIC) on how the Privacy Act pertains to the notification of at-risk family members, leading to updated guidelines issued by the OAIC in May 2025. These guidelines reiterate that clinicians can legally gather contact information from patients about their relatives and use it to reach out to those relatives provided there is consent from the patients.
These new provisions, now clearly outlined, give confidence to healthcare providers, affirming that they can legally communicate genetic risk information to relatives, thereby supporting preventive health actions. This move is part of a more extensive effort by Monash University’s Public Health Genomics team, which also facilitates initiatives like the DNA Screen program. This program offers free, secure DNA testing to Australians to identify risks of diseases such as cancer and heart conditions early.
The response to this development has been widely positive. The MJA has praised the timely nature of Dr Tiller’s paper. Dr Virginia Barbour, Editor-in-Chief of the MJA, acknowledged the necessity of this guidance for clinicians who need a clear framework to follow when communicating genetic risks to patients’ relatives.
Furthermore, Tiffany Boughtwood, the Australian Health Genomics Commissioner at Genomics Australia, has shown support for these guidelines, highlighting their role in enhancing genomics-informed healthcare quality. Julia Mansour, CEO of the Human Genetics Society of Australasia, also welcomed the directive, stressing how these guidelines bolster the clinicians’ ability to facilitate family discussions about genetic health risks.
The guideline’s impact is expected to extend beyond direct health communication; it also serves as a precursor to the harmonisation of state, territory, and national regulations concerning privacy in genetic information sharing, potentially influencing future legislative frameworks.
This advance is accompanied by an MJA podcast on the topic, further explaining the impacts and utilities of the new guidelines, and provides a richer context for understanding the implications of this regulatory clarification.
WHAT: Australia’s national privacy regulator has given the green light for clinicians to inform a patient’s relatives about potential inherited genetic risks
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