Australasian Science: Australia's authority on science since 1938

Cold Case for a National Genetic Database

By Guy Nolch

If we won’t share our medical history across the health system, it’s hard to see Australians handing over their genetic profile.

The full text of this article can be purchased from Informit.

In November, the federal government extended the opt-out deadline for My Health Record following a public backlash against the system, which enables digital health records to be accessed across the healthcare network. Throughout our lives we change GPs and have medical crises far from home, so it’s easy to see the logic in giving doctors access to our entire medical history, no matter where or when we need it.

However, concerns about data breaches, authorised access by government agencies such as the Australian Taxation Office and police, and even the secondary use of de-identified data by researchers have dogged public acceptance of the system. These apprehensions arose despite the ubiquity of social media, in which our images, experiences and interests are shared with friends and, ultimately, advertisers that can target our “likes” – including our health-related internet browsing history.

As this unfolds we’re also seeing a growing interest in our genetic information, with direct-to-consumer (DTC) genetic tests gaining in popularity (despite their contentious ability to predict our predisposition to disease), while genetic samples are also wilfully given up to genealogy companies that use it to divine our ancestry.

Police are also accessing genetic data to solve crimes. In the USA, for instance, police can search state and federal databases...

The full text of this article can be purchased from Informit.