The Privacy Act permits the handling of health information for health and medical research purposes in certain circumstances, where researchers are unable to seek individuals' consent.  This recognises:

• the need to protect health information from unexpected uses beyond individual healthcare
• the important role of health and medical research in advancing public health.

To promote these ends, the Privacy Commissioner has approved two sets of legally binding guidelines, issued by the National Health and Medical Research Council (NHMRC). Researchers need to follow these guidelines when handling health information for research purposes without individuals' consent.  The guidelines also assist Human Research Ethics Committees (HRECs) in deciding whether to approve research applications. The guidelines are produced under sections 95 and 95A of the Privacy Act. 

The first set, Guidelines under Section 95 of the Privacy Act 1988: privacy and medical research (March 2000), set out procedures that HRECs and researchers must follow when personal information is disclosed from a Commonwealth agency for medical research purposes.

The second set, Guidelines under Section 95A of the Privacy Act 1988 (December 2001), provide a framework for HRECs to assess proposals to handle health information for health and medical research (without individuals' consent).  They ensure that the public interest in the research activities substantially outweighs the public interest in the protection of privacy.

Other places to go...

• Public Interest Determinations: Procedures
• Review of the guidelines under section 95 of the Privacy Act 1988: Joint summary