My Health Record can store genomic information but critics say it's not ready
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My Health Record can store genomic information but critics say it's not ready

The federal government's My Health Record system is capable of storing genomic information, such as a person's genetic risk of developing cancer, which could turbocharge medical research but has intensified privacy and security fears.

Fairfax Media can reveal Sydney-based whole genome sequencing company Genome.One developed “necessary infrastructure” in order to upload highly sensitive genomic information onto My Health Records.

Your genome is the complete set of genetic instructions encoded in the two metres of DNA in most of your cells.

Your genome is the complete set of genetic instructions encoded in the two metres of DNA in most of your cells.

Photo: Alamy

The Australian Digital Health Agency (ADHA), which for weeks has been deflecting privacy and data security concerns, handed the for-profit company $40,000 in September last year to support the development of the software.

Genome.One, a wholly-owned subsidiary of The Garvan Institute of Medical Research, can sequence an individual's entire genetic information and identify genetic variations which may increase the chances of developing a particular disease.

This sort of service has potential to triple diagnosis rates among people with rare unknown genetic diseases and allows the customisation of treatments.

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But Bruce Arnold, a privacy expert at University of Canberra, raised concerns about the uploading of genomic data onto My Health Records, saying: “It’s outrageous. Why didn’t we know about this? The lack of information only fosters fear and distrust."

The federal government has been criticised for shifting My Health Record to an opt-out system.

The federal government has been criticised for shifting My Health Record to an opt-out system.

Photo: Alamy

“You can change your name, your gender or your credit card number, but you can’t change your DNA. It’s indelible. We need to be extremely careful about consent and what is collected and how it's used.”

Federal Health Minister Greg Hunt moved to allay concerns last week by announcing he would redraft legislation to restrict police access and allow the permanent deletion of records, but the revelations are expected to stoke a fresh debate about the opt-out system.

While Genome.One said it would only upload genomic pathology reports, not genomic DNA sequencing data, the fact these reports reveal a person’s risk of getting 31 cancers, 13 heart conditions and eight inherited conditions across 230 genes raises new privacy and security questions.

Paul Lacaze, head of Public Health Genomics at Monash University, said a national electronic system was “essential” if Australia wanted to achieve its full potential in precision medicine, but it needed to be implemented “properly” from the start.

“An invasion of your genetic information privacy is more personal and potentially more offensive than other types of data,” he said.

He said genetic results should be stored in a separate system and there should be an additional layer of consent.

“The first reason is familial – your genetic results can imply something in a family member, that they may have also inherited that same genetic variation that they may or may not want to know about,” he said.

“Secondly, Australia still permits the use of genetic test results in life insurance underwriting, a practice long ago banned by most other comparable countries.”

Federal Health Minister Greg Hunt is trying to allay concerns around My Health Record.

Federal Health Minister Greg Hunt is trying to allay concerns around My Health Record.

Photo: AAP

Dr Lacaze said stronger bioethics legislation and consumer safeguards were needed before pathology providers begin uploading genomic information to My Health Record.

“In my opinion, it’s too early to include it … it should happen after privacy and insurance legislations have been reviewed and after the core health record system has been in existence for longer.”

Your genome is the complete set of genetic instructions encoded in the two metres of DNA in most of your cells.

Genomics – healthcare that’s tailored to a person’s unique genetic makeup – promises to improve the prevention, diagnosis and treatment of disease.

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Minister Hunt, who has committed $500 million for the Genomics Health Futures Mission, said My Health Record had the full support of Australia’s genomic leaders.

“The protection of patient information and privacy is critical and we have strong safeguards in place to protect health data,” his spokesman said.

The ADHA said patients could choose whether they wanted genomic pathology results added to their My Health Record, like other health information, and always view a full history of access.

Dr Elizabeth Sigston, a leading head and neck surgeon, said the commercial genetic testing industry was pushing for genetic information to be integrated into record systems around the world and Australia shouldn't acquiesce.

While only genomic pathology reports can be uploaded to My Health Records, Dr Sigston raised concerns about the potential release of de-identified health information for research purposes and the difficulty of anonymising genomic data.

She also said despite receiving billions of investment dollars, the genomics field hadn’t made substantial progress and only a small group of patients would benefit from genomic profiling.

“[Adding genomic information to records] isn’t necessary and most people wouldn’t know how to interpret it,” she said.

The ADHA did not answer whether genomic information was useful for most doctors, could be truly de-identified or required extra safeguards.

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Its website makes no explicit mention that “genomic” or “genetic” information can be included in records.

The Garvan Institute said My Health Record would improve patient care and medical research.

“In terms of how it might be used by clinicians, a genomic pathology report is no different to any other pathology report ... it will be of value to those who are equipped to use it,” a spokeswoman said.

Peak body Australian Genomics said: “We are undertaking extensive studies of the ethical, legal and policy issues associated with genomic data protection.”

Esther Han is a health reporter at The Sydney Morning Herald. She has previously been consumer affairs editor and also covered food and wine.