Patient Privacy is Paramount

27 November, 2023

 I thank Dr Freelander for bringing this motion before the parliament and the Australian people. It's good to hear the expertise of the member for Higgins in the speech she just delivered to the House. The government must act to protect patient confidentiality and prevent genetic discrimination. Australia has a distinguished history of innovation in medicine—for example, the electronic pacemaker in 1926, ultrasound in 1961 and the multichannel cochlear implant in the 1970s, which my father's hearing benefited from. This innovative spirit is backed by our nation's global reputation for producing groundbreaking research. This reputation has been hard won over long decades through dedicated scientific inquiry, rigorous research and, above all, adherence to ethical principles.

In recent years we've seen increasing research in and accessibility to testing in the field of genetics. This field has the potential to help us take significant steps towards understanding the nature of genetically linked diseases—diseases like cancer, heart disease and Alzheimer's. In addition, this field has the potential to help us develop personalised prevention and treatment strategies, which would be a game changer for thousands of people across the world. Imagine for a moment, though, a patient who has had genetic testing done, whether it be for research or for personal preventative health measures, then being penalised by insurers for taking this step, through high premiums, lower insurance levels or not being able to access insurance at all. That becomes a deterrent to being tested.

Progress in the field of genetic medicine should not come at the cost of breaching the fundamental principles of privacy and confidentiality for individual patients. We must ask ourselves: are we truly committed to improving the health of this nation? If so, are we truly committed to protecting the rights of our citizens to privacy, confidentiality and the protection of their medical information? These are fundamental human rights. Australia's international human rights obligations demand that we do not discriminate on the basis of genetics. Article 6 of the UN's Universal Declaration on the Human Genome and Human Rights requires a prohibition on discrimination based on genetic characteristics. Article 25 of the UN Convention on the Rights of Persons with Disabilities specifically refers to discrimination in the offer of life insurance. Meanwhile, Australia's Disability Discrimination Act 1992 prohibits discrimination based on genetic status. However, there is an exemption for insurers if an underwriting decision is based on reasonable data. How is that fair? How does that protect the confidentiality and freedom from discrimination of everyday Australians?

Australia is lagging behind our Commonwealth partners in numerous countries around the globe. Both Canada and the UK protect the genetic information of individuals more than we do and have taken significant steps to prohibit the use of genetic test results in life, income-protection, and critical-illness insurance. A review by the Geneva Association showed that 13 of the 20 listed countries protected the disclosure of genetic results to insurers in any circumstance. Australia is not part of that group. Who would have thought, in 2023, that Australia would lag behind the world on the protection of confidential patient information and the prevention of genetic discrimination? This nation needs to, first and foremost, protect the privacy of Australians, eliminate genetic discrimination and give people confidence to be tested so that they can participate in research and remove the barrier to Australia providing targeted health measures in future planning. The first action must be to remove the exemption of insurers in the Disability Discrimination Act 1992. Regardless, our Commonwealth, state and territory governments must work towards protecting the confidential genetic information and prohibiting genetic discrimination of the Australian people. I cannot make the case more clearly than I have today on behalf of the people of Australia. Big business may not like this, but I am still here about this nation's people.

Stay In Touch

Please contact my office with any issue or concerns you have. I am here to listen and represent you.
Contact Us
Russell Broadbent MP
Sign up here to receive the latest news from my inbox.