Expert pours cold water on My Health Record genomics fears

Doug Hendrie

6/08/2018 3:28:14 PM

An RACGP e-health expert has poured cold water on fears that genomic data will not be safe if uploaded to My Health Record.

Genomic medicine is in the news.
Genomic medicine is in the news.

Chair of the RACGP Expert Committee – eHealth and Practice Services (REC–eHPS) Dr Nathan Pinskier believes recent reports that genomic data would be uploaded to the government’s health data repository should not trigger concerns.
‘[Genomic data] is the same as other pathology tests. It goes to My Health Record based on consent. They’re not uploading the DNA, but just a summary of findings,’ Dr Pinskier said.
‘Consumers have control. They can upload or not upload – it’s up to them. If they want to remove the data afterwards, they can.
‘I’d argue a consumer would like a place to keep this information, rather than having to go back to the laboratory all the time.’
Dr Pinskier said that My Health Record contained a copy of information already held on existing systems, such as a GP clinic’s software.
He said that concerns around implications for genetic data and insurance policies were irrelevant, as any relevant genetic testing had to be disclosed to an insurer regardless of whether the data had been stored on My Health Record or not.
‘If you have a [relevant] medical history, you have to disclose it to your insurance company – otherwise they may deny your claim subsequently. If you’re worried about this, don’t get a genetic test done in the first place,’ he said.
Dr Pinskier said that My Health Record would produce significant upstream benefit in the medium term, as long as the program reached a critical mass of participants.
‘I’m optimistic it will make a difference. But it’s like reducing smoking – it takes years before you see the benefit. This is like a big preventive health program – reducing medical error and improving delivery to improve outcomes,’ he said.
‘If there are enough people in the system, we’ll start to realise the benefits over time. If not, doctors may just go back to ringing someone up, relying on memory [of previous consultations], or making assumptions, which is not the best way to run a healthcare system in the 21st century.’
However, GP and University of Melbourne Associate Professor Grant Blashki told newsGP he still had concerns around use of genomic data.
‘Whilst I can see the wonderful potential for research, preventive care and improved health outcomes, I have to say it makes me nervous that peoples’ genomics data, even in a limited form, could be uploaded to My Health Record,’ he said.
‘I would feel much more confident if we could get the My Health Record working well at least for a few years, with all the governance, privacy, ethical and consent issues ironed out, before launching into uploading the highly sensitive and powerful data that genetic information represents.’

Roughly one in four Australians has a My Health Record, with the remainder of the population having to choose whether or not to have a record automatically created for them by mid-October this year.
Privacy and security experts have raised concerns around the system’s security and resilience in recent weeks, while many doctors have made the case for opting in.
The RACGP’s Genomics in general practice guide states that ownership and privacy of data from personal genetic testing is a complex issue.

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