I, Angelene Falk, Australian Information Commissioner, hereby approve pursuant to section 95AA of the Privacy Act 1988 (Cth) (Privacy Act) guidelines issued by the Chief Executive Officer of the National Health and Medical Research Council (NHMRC) that relate to the use and disclosure of genetic information of an individual to that individual’s genetic relatives, namely, 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 (updated 2024).
Under section 95AA, for the purposes of paragraph 16B(4)(c) of the Privacy Act, I may approve guidelines that relate to the use and disclosure of genetic information for the purposes of lessening or preventing a serious threat to the life, health or safety of an individual who is a genetic relative of the individual to whom the genetic information relates.
The guidelines issued by the NHMRC set out how health practitioners in the private sector may use and disclose genetic information about a patient to the patient’s genetic relatives, in circumstances where the patient has not consented to such use and disclosure. They also set out how health practitioners should first discuss with the patient the need for the use or disclosure and attempt to obtain the consent of the patient.
This approval has the effect of repealing the Approval by the Privacy Commissioner of guidelines issued under section 95AA of the Privacy Act 1988 (March 2014, FRLI F2014L00244).
This approval takes effect on 1 April 2024.
[signed]
Angelene Falk
Australian Information Commissioner
25 March 2024
Note: The name of this instrument was amended on registration as the instrument as lodged did not have a unique name (see subsection 10(2), Legislation Rule 2016).