Response to the Report on the Review of the Privacy Act

This paper sets out Research Australia’s response to the Attorney-General’s Department’s Privacy Act Review Report, published on 16 February 2023, covering the proposals that affect the use of personal information in research. It explains the current consent exceptions for medical research under sections 95 and 95A of the Privacy Act 1988 and the Review’s proposals for broad consent for research (Proposal 14.1) and further consultation on widening research without consent and creating a single exception and set of guidelines (Proposals 14.2 and 14.3). Research Australia supports broadening the scope of research permitted without consent, so that data on social determinants of health such as education, income and housing can be used, and a single exception covering both agencies and organisations. It supports broad consent, including for data collected for healthcare, data linkage and reuse, and agrees that withdrawing consent should be easy, but maintains that withdrawal should not apply after results are published or after a person’s death.