Field 03 of 05 · Privacy
OAIC and healthdirect · checked 8 October 2026
Your genetic data and privacy
In the OAIC’s guidelines on the Australian Privacy Principles, genetic information that is not health information is “sensitive information”, and sensitive information generally gets a higher level of privacy protection than other personal information. healthdirect adds a practical risk: some companies selling tests online are based overseas, may be less careful about privacy than Australian ones, and ordering from them risks your private information reaching others.
General information, not medical advice. Call Triple Zero (000) in an emergency, or go to the emergency department of your nearest hospital. The official places to check are the OAIC’s guidelines and healthdirect’s page on genetic testing.
Definitions
Genetic information in the OAIC’s guidance
The Office of the Australian Information Commissioner (OAIC) publishes guidelines on the Australian Privacy Principles, the APPs. Chapter B explains key concepts, and this guide quotes it as the OAIC’s guidance.
In its part on health information, the chapter says:
“(Other types of genetic information that are not health information fall within the definition of ‘sensitive information’, discussed at paragraphs B.138–B.141).”
Paragraph B.141 then gives the definition of sensitive information. It begins “‘Sensitive information’ is a subset of personal information and is defined as:” and one of the kinds it lists is “genetic information (that is not otherwise health information)”. That is one item of a longer list; the OAIC’s Chapter B sets out the rest.
So in the OAIC’s guidance, genetic information “in a form that is, or could be, predictive of the health of the individual or a genetic relative of the individual” is health information, and genetic information that is not health information is sensitive information. The same definition of sensitive information also lists “health information about an individual”.
Protection
Extra protection for sensitive information
The OAIC explains why that category matters:
“Sensitive information is generally afforded a higher level of privacy protection under the APPs than other personal information (for example, see APPs 3, 6 and 7). This recognises that inappropriate handling of sensitive information can have adverse consequences for an individual or those associated with the individual.”
Its example: “discrimination or mistreatment is sometimes based on a person’s race or ethnic origin or union membership.” It adds that mishandling sensitive information may also cause humiliation or embarrassment, or undermine a person’s dignity.
The life insurance Act shows how far genetic information can reach: its definition of protected genetic information includes information about the testing of “a genetic relative of the individual”.
Overseas companies
Companies based overseas
healthdirect lists concerns about privacy and data storage among the risks of genetic testing, and notes that some companies you can order tests from online are based overseas. It says these companies might be less careful about privacy than Australian ones, so ordering from them carries a risk that your private information could become available to others.
That is healthdirect’s point about companies based overseas, given as healthdirect makes it. It names no company, and neither does this guide.
Insurers
Insurers and your genetic results
Insurers are one group the rules speak to directly. Since 8 October 2026, NSW Health’s Centre for Genetics Education says, life insurers can no longer ask you for protected genetic information, or use it to count against you in their risk assessment. If you change or increase your cover, CGE says you may have to answer new questions and tell the insurer about changes to your health, but you will not have to disclose genetic results.
CGE also says health insurers cannot use your genetic results, or a family history of a genetic condition, to refuse you cover or raise your premium, though with a diagnosed genetic condition, or signs or symptoms, you may be unable to claim for related treatment for up to 12 months after taking out cover.
General insurance is different: the Act does not apply to risk-rated general insurance policies, and some travel insurers ask whether genetic testing has been done. Genetic tests and life insurance has the detail.
Comparison
Comparison with other people’s results
Some results are made by comparison. For autosomal DNA testing, which looks at large numbers of variations across a person’s whole genome, the Centre for Genetics Education, on a page last updated in March 2021, says ancestry results are compared with those of other people who have taken the tests, to estimate a person’s ethnic background, and that different companies compare results with different databases. Ancestry and paternity tests explains what that means for a result.