Australasian Science Magazine

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.

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 containing the genetic profiles of more than 16 million people who have been arrested or convicted, or private databases containing the genetic data of tens of millions of patients, consumers and research participants.

“Requests for privately maintained data are likely to become much more frequent,” according to a Policy Forum published in Science (https://goo.gl/pznaWV) that raised the merits of a universal genetic forensic database in the US. For a start, “forensic databases that contain only genetic data of arrestees and those convicted of crimes have serious limitations, a fact demonstrated by law enforcement’s increasing reliance on publicly accessible and private databases, composed almost entirely of ‘innocent’ individuals”.

As a result, “a universal database would be less discriminatory” than criminal databases that are “skewed against the disadvantaged because they are the ones most likely to be the focus of such convictions and arrests”. In contrast, “public and DTC databases tend to contain the genetic data of predominately white individuals, generally from higher income brackets”.

Even then, “considerable inefficiency is likely if the effort to find a match requires consulting numerous companies, all of which may need to re-analyze their sample to generate the relevant profile”. Therefore, “a universal database would eliminate the temptation on the part of law enforcement to use public, DTC, or research databases for investigative purposes”.

While the paper contends that “the criminal stigma of being in a database is eliminated if everyone’s DNA is acquired,” the Australian experience with My Health Record data indicates that a universal genetic database would face vocal opposition, regardless of assurances about the security of such as system and the safeguards in place to prevent its abuse – by hackers and authorities alike. Australians place a high value on law and order, but police can already identify and track suspects and their associates via CCT footage and GPS, as well as access their phone calls, text messages, social media posts and browsing history. Is genetic surveillance necessary as well?

The legislation for My Health Record has already been amended to enable the Australian Digital Health Agency to disclose health information to authorities if it “reasonably believes” it is necessary for matters such as preventing or investigating crimes and protecting public revenue. With the slippery slope so easily greased, one can only anticipate further public mistrust of the integrity of a digital record that can cross-reference the medical history and future disease risk of not only individuals but also their relatives.