Finance Consumer My Health Record prompts concerns over storage of DNA data

My Health Record prompts concerns over storage of DNA data

You could inadvertently be handing over private details about your DNA. Photo: Getty
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Your risk of developing a certain type of cancer and susceptibility to particular mental health problems could be forever stored in the My Health Record online database.

This comes after a Fairfax report revealed that Australian genetic information company Genome.One is able to upload DNA data to My Health Record, which The New Daily later confirmed with federal Health Minister Greg Hunt’s office.

It has raised questions as to whether the thousands of Australian consumers who have purchased a home DNA kit could effectively upload their test results to My Health Record.

Biotechnology expert Dr Wendy Bonython told The New Daily it won’t be long before other companies also look at uploading data to My Health.

An example of health results presented to a 23andMe customer. Photo: Pinterest

Genetic privacy experts have warned that DNA data not only carries highly sensitive information about your genetic makeup, but also that of your close family members – even your unborn children.

While you may consent to the data being shared, family members may disagree.

For example, your home DNA test may reveal that you have a high risk of Huntington’s disease, which has no cure.

This result would also expose a close family member of a susceptibility towards having the disease.

“They may not want to know that. It could cause them to live under a death sentence or possibly lead to self-harm,” Dr Bonython said.

“You may be happy to share this information, but that’s not to say that your close family members would give consent.

“And while home DNA kits may be fun, there are still serious questions about the accuracy and validity of these tests.”

My Health Record privacy concerns

The equivalent of Australia’s My Health Record in Singapore – SingHealth – was targeted by hackers just last month.

It compromised the personal data of 1.5 million healthcare patients including Singapore Prime Minister Lee Hsien Loong.

More generally, hundreds of thousands of Australians have had their personal information compromised by more than 300 data breaches since February, according to the Office of the Australian Information Commissioner.

Why DNA data is particularly important

Home DNA companies include AncestryDNA, 23andMe, Family Tree, MyHeritage and Living DNA, which typically require a customer to send a sample of saliva to their lab for testing.

The consumer later receives details about their proportional heritage – for example, 25 per cent Italian – and is given the option to connect with genetic relatives.

It is unclear what other information these DNA tests may capture, but there are some clues.

Certain companies such as 23andMe also calculate a consumer’s risk of developing certain diseases.

The New Daily reported last year that home DNA data could expose you to discrimination by insurance companies or employers.

In what has been described as a landmark case, US-based home DNA company 23andMe sold its data to British pharmaceutical company GlaxoKlineSmith.

As one 23andMe board member hinted back in 2013 to US business magazine Fast Company: “The long game here is not to make money selling kits, although the kits are essential to get the base level data … Once you have the data, [the company] does actually become the Google of personalised health care”.

Australian Privacy Foundation chair Bruce Arnold said bulk DNA data is “incredibly valuable”.

“Companies will gift this data to commercial entities and they will cash in,” he said.

“Is the ultimate intention of My Health Record to sell off bulk genomic data to the highest bidder?

“Consumers should be cautious. Your DNA is indelible. It’s a blueprint of yourself. There is a great need for better regulation of consent and disclosure.”

A spokeswoman for Mr Hunt said the protection of patient information and privacy is “critical” and that there would be strong safeguards in place to protect health data.

“If anyone is found doing the wrong thing with patient information they will face severe penalties, including jail sentences,” she said.

“My Health Record has been operating for six years with almost six million Australians using the system with no security breach.”

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