Alerting genetic relatives to a risk of serious inherited disease without a patient’s consent

Graeme K Suthers, Elizabeth A McCusker and Samantha A Wake
Med J Aust 2011; 194 (8): . || doi: 10.5694/j.1326-5377.2011.tb03026.x
Published online: 18 April 2011

Guidelines for private sector practitioners implementing the new provisions in the Privacy Act

Every health care practitioner must respect confidentiality. Patients reasonably expect that private information offered or identified during an episode of care will not be divulged without their consent. The fundamental importance of confidentiality finds formal expression in the National Privacy Principles. Practitioners in the private sector must comply with the National Privacy Principles, which are embodied in the Privacy Act 1988 (Cwlth).1 Public sector employees are obliged to comply with the relevant legislation in each jurisdiction.

  • 1 SA Clinical Genetics Service, SA Pathology, Women’s & Children’s Hospital, Adelaide, SA.
  • 2 Department of Paediatrics, University of Adelaide, Adelaide, SA.
  • 3 Huntington Disease Service, Department of Neurology, Westmead Hospital, Sydney, NSW.
  • 4 Genetic Health Services Victoria, Murdoch Childrens Research Institute, Melbourne, VIC.
  • 5 Department of Paediatrics, University of Melbourne, Melbourne, VIC.

Competing interests:

We were on the NHMRC committee that drafted the guidelines for practitioners about using the provisions of the Privacy Act 1988 (Cwlth) to disclose genetic information without consent, and received travel support from the NHMRC to attend committee meetings; Samantha Wake also received a sitting fee.

  • 1. National Health and Medical Research Council. Use and disclosure of genetic information to a patient’s genetic relatives under section 95AA of the Privacy Act 1988 (Cth). Guidelines for health practitioners in the private sector. Canberra: NHMRC, 2009. (accessed Nov 2010).
  • 2. Allen CJ, Ferson MJ. Notification of infectious diseases by general practitioners: a quantitative and qualitative study. Med J Aust 2000; 172: 325-328.
  • 3. BT v Oei [1999] NSWSC 1082 at 95.
  • 4. Forrest K, Simpson SA, Wilson BJ, et al. To tell or not to tell: barriers and facilitators in family communication about genetic risk. Clin Genet 2003; 64: 317-326.
  • 5. Falk MJ, Dugan RB, O’Riordan MA, et al. Medical geneticists’ duty to warn at-risk relatives for genetic disease. Am J Med Genet A 2003; 120A: 374-380.
  • 6. Australian Law Reform Commission. Essentially yours: the protection of human genetic information in Australia. ALRC Report 96. Sydney: ALRC, 2003. (accessed Nov 2010).
  • 7. Otlowski MFA. Disclosure of genetic information to at-risk relatives: recent amendments to the Privacy Act 1988 (Cwlth). Med J Aust 2007; 187: 398-399. <MJA full text>
  • 8. Suthers GK, Armstrong J, McCormack J, Trott D. Letting the family know: balancing ethics and effectiveness when notifying relatives about genetic testing for a familial disorder. J Med Genet 2006; 43: 665-670.
  • 9. National Health and Medical Research Council. Medical genetic testing: information for health professionals. Canberra: NHMRC, 2010. (accessed Nov 2010).
  • 10. Australian Government Office of the Privacy Commissioner. Private sector information sheet 29 — Use or disclosure of genetic information in the private health sector. Canberra: OPC, 2009. (accessed Nov 2010).


remove_circle_outline Delete Author
add_circle_outline Add Author

Do you have any competing interests to declare? *

I/we agree to assign copyright to the Medical Journal of Australia and agree to the Conditions of publication *
I/we agree to the Terms of use of the Medical Journal of Australia *
Email me when people comment on this article

Online responses are no longer available. Please refer to our instructions for authors page for more information.