Privacy regulator confirms clinicians can notify patients’ relatives of genetic risk, with patient consent

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Key points 

  • Clinicians can contact patients’ relatives about possible inherited genetic risks
  • Public health legal adviser Dr Jane Tiller argues this is critical for prevention of disease caused by genetic factors
  • Dr Tiller’s new MJA paper clarifies the privacy situation

Australia’s national privacy regulator recently confirmed that clinicians may contact a patient’s relatives about possible inherited genetic risks - with the patient’s consent - without breaching privacy laws.

A new paper by Monash University Public Health Genomics Ethical, Legal & Social Adviser Dr Jane Tiller, published today in the Medical Journal of Australia (MJA), details the discretion available to clinicians.

Dr Tiller said letting family members know about their genetic risks was critical, especially for conditions where actions could be taken to prevent disease, 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.”

In 2024, following years of research and public discourse, Dr Tiller sought advice from the Office of the Australian Information Commissioner (OAIC)—Australia’s national privacy regulator—about how the Privacy Act applied to the notification of at-risk relatives with patient consent.

Recognising the importance of genetic risk communication for disease prevention, the OAIC updated its online Guide to health privacy in May 2025 to clarify that clinicians may legally collect relatives’ contact details from patients and use those to contact at-risk relatives with patient consent.

“I am so grateful for the OAIC’s responsiveness to the need for clarification in this rapidly evolving area,” Dr Tiller said. “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.”

This guidance clarifies the discretion available to clinicians who are subject to the Commonwealth Privacy Act – primarily those who work in private practice. State and Territory privacy regulations also apply to clinicians working in public hospitals and institutions.

“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,” said Dr Tiller, who is a lawyer as well as a genetic counsellor and public health researcher.

“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.”

This work is part of a broader public health initiative led by Monash University’s Public Health Genomics team, to improve access to life-saving genetic information for families. The DNA Screen program, co-led by Dr Tiller, piloted the offer of secure, free DNA testing to the Australian population to identify risk of cancer and heart disease that can be prevented or treated early.

The Medical Journal of Australia Editor-in-Chief, Virginia Barbour, said, “The MJA is pleased to publish this timely paper. This guidance will help clinicians navigate how at-risk relatives can be adequately informed of serious genetic risk and is much needed, given current misunderstanding surrounding this practice in Australia.”

Tiffany Boughtwood, the new Australian Health Genomics Commissioner with Genomics Australia (an entity within the Commonwealth Department of Health, Disability and Ageing), also welcomed the outcome.

“I welcome the updated guidance from the OAIC,” she said. “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”.

The Human Genetics Society of Australasia (HGSA) CEO Julia Mansour said: “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.”

The paper is accompanied by an MJA podcast, which can be accessed here.