Confidentiality and Privacy

Patients and doctors are understandably concerned about the confidential nature of some genetic test results. As with any medical information, we take the issue of confidentiality of genetic tests very seriously.

  • Test reports are only provided to the clinician requesting the test and to other clinicians or healthcare services caring for the patient.
  • Verbal reports will only be provided to clinicians known to the laboratory and only for urgent tests; such reports will always be followed by confirmation by fax, email, or post.
  • Test reports will not be provided to other people, including relatives, unless written approval to release the report is provided by the person tested (or the appropriate delegate). Such approval must be viewed by the laboratory.

A patient’s sample and genetic test report may be used within the laboratory to assist in test development or for quality assurance purposes. This is routine laboratory practice.

There are situations in which the laboratory may be required to release a test result to a third party without the consent of the patient. These situations include a legitimate subpoena to submit information to a court, or a requirement under Government Public Health regulations.

There is also provision for a doctor to release medically significant information about a familial disorder to close relatives without the consent of the patient. This provision reflects changes to the Federal Privacy Act (2006) which allow a doctor to release such information under strictly defined conditions. The purpose of this provision is to reduce the potential harm that could arise from relatives being unaware of their risk of developing a heritable preventable disorder. Please note that it is the patient’s doctor, not the laboratory, who potentially has the authority to release information for this purpose. Sonic Genetics will not release medical information to relatives without written consent from the patient tested.

Further resources

  • The Office of the Australian Information Commissioner provides an overview of issues relating to privacy, genetic information, and healthcare.
  • The NHMRC discussion document on medical genetic testing  includes a discussion of ethical issues.
  • For clinicians with access to the MJA, there is a brief overview of the purpose and requirements of the amended privacy legislation.
  • The NHMRC has developed detailed guidelines regarding the release of genetic information without consent. It is important to note that these guidelines are specified within the amended Privacy legislation, and compliance is mandatory if a clinician is to act within the provisions of that legislation.