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Disclosing genetic information to at-risk relatives: new Australian privacy principles, but uniformity still elusive

Recent reforms to the Privacy Act 1988 (Cwlth)1 have led to a single set of Australian Privacy Principles (APPs), replacing the former National Privacy Principles (NPPs) and Information Privacy Principles (IPPs). Although a key objective of the reforms was to ensure greater consistency on privacy regulation in Australia,2 the law surrounding disclosure of genetic information to at-risk genetic relatives varies across Australia.

Brief legislative history

While patient autonomy features strongly in health law, a legislative exception to a patient’s right to privacy was introduced in 2006 as an amendment to the Privacy Act.24

Former NPP 2.1(ea) authorised the disclosure by health practitioners of genetic information to a genetic relative without the patient’s consent if the health practitioner reasonably believed that disclosure was necessary to lessen or prevent a serious threat to the life, health or safety of an individual who is a genetic relative. The amended Privacy Act enabled the National Health and Medical Research Council to publish guidelines (approved by the Privacy Commissioner) on the use and disclosure of genetic information to a patient’s genetic relatives under s 95AA of the Privacy Act in 2009.5 The substance of…