Researchers are raising concerns over 'direct-to-consumer' genetic tests, saying they could impact on life insurance policies and even damage family relationships.
Monash University’s Professor Ken Harvey says these tests often promise more than they deliver, and are regularly analysed by people without proper training.
“In the age of individuality and consumer empowerment some people want to take things into their own hands, but that’s not without its risks,” he said.
According to an article written by Professor Harvey and Dr Basia Diug from Monash’s Medical Education Research and Quality unit, the tests “usually involve the collection of cellular material from cheek swabs or saliva which is sent to a laboratory that analyses the DNA."
These are different to clinical services that are ordered by a GP.
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President of Syndromes Without A Name (SWAN), Heather Renton, whose daughter was diagnosed with FOXP1 Syndrome after two misdiagnoses, says everyone has a few so-called “dodgy genes."
“You might have a gene susceptible to breast cancer the older you get, but as a 20-year-old you have no idea you’ve got that,” she said.
“Life’s a lottery game.”
After going through two misdiagnoses, she says she understands why some people would use these tests.
“People are sometimes so desperate for answers,” she said, but “who’s to know that it’s credible - you might think you’ve got this gene and it might turn out that you don’t.”
Local vs international
Regulators are starting to catch up to the technology.
A framework introduced in 2010 forced manufacturers to get a conformity assessment certificate from the Therapeutic Goods Administration.
As of July 1, local laboratories will have to develop standards for their tests to abide by, which will have to be accredited by independent authorities.
That same month also sees the introduction of a new Life Insurance Code of Conduct.
But Professor Harvey says overseas providers aren’t subject to the same conditions as local companies, and can get away with more.
“If you’re getting something over the internet it can be really difficult to assess whether that test has been accredited by a reputable independent authority,” he said.
The results then have to be interpreted by a medical official, most often a GP. Professor Harvey says this doesn’t always go down well.
“Though the results would go back to the GPs, many GPs really had no idea what to do with these results when they got them”, he said.
“I’ve had GPs tell me one of their patients comes in clutching a handful of printouts about their genetic tests and they say ‘what am I meant to do with this?’”
And the information revealed isn’t always welcome.
“If you get one of these batteries of genetic tests, the implication is these are genetic conditions that can be inherited; the results are not just important or significant to you, but to your family members, your children, etc,” Professor Harvey said.
“The implications go beyond a particular person – and not everyone wants to know.”
Ms Renton from SWAN urges caution.
“For some families it’s been life shattering to find out they’ve actually passed this condition on to their child, and they carry this guilt,” she said.
'Misleading claims'
Professor Harvey is particularly critical of 'myDNA', an Australian genetics company that says it: “Help(s) Australians make informed decisions about which medications are best for them, which foods they may not digest well, and the impact of lifestyle factors such as alcohol, coffee and exercise.”
On its website, it says individuals as young as 12 months old can use their products, and that 70 per cent of people who’ve taken a myDNA test “have a finding that could affect current or future medications.”
In September last year, pharmacy franchise Chemmart withdrew all advertising materials for the product, after the Australian Competition and Consumer Commission said its claims were too misleading.
To disclose or not to disclose
Many people may not realise that these tests can affect their life insurance.
According to the Financial Services Council’s standard on genetic testing, member organisations are forbidden from requesting a customer take a test as part of an application.
However, they can ask applicants “to provide existing genetic test results for the purposes of risk classification”.
myDNA asserts as it does not test for disease risk its results should not be applicable to life insurance policies.
Chair of the Australian Genetic Non-Discrimination Working Group, Professor Margaret Otlowski, says the confusion over the credibility of the direct-to-consumer tests should raise a red flag.
“You might question how valid or useful they are for something like life insurance which is meant to be based on very robust evidence,” she said.
Research released in May by the Institute of Actuaries of Australia suggests that even a slight increase in the level of genetic testing could see a jump in life insurance claims, and lead companies to raise their premiums.
They warn that these tests would be bad for the insurance industry, with some consumers who believe they have a “low genetic risk” likely to let insurance policies lapse.
A joint parliamentary committee is currently examining the life insurance industry, including the application of genetic tests within it. It’s expected to release a report later this year.
