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16 December 2013

Public warned of risks of online genetic testing

Western Australians are being urged to think twice before going online to order tests that can reveal their risk of developing certain genetic conditions and diseases.

The warning from WA Health comes amid growing public interest in genetic testing and increasing marketing of genetic testing provided directly to the public, often with dubious results and no medical oversight.

"Going online, rather than to your doctor, to determine your risk of developing various genetic conditions is fraught with risk," Director of Office of Population Health Genomics Professor Hugh Dawkins said.

"It is important that individuals understand the full implications of what they are doing when they bypass the conventional medical route in seeking such information."

"The results of genetic testing can have an enormous emotional impact on individuals and their families as well as significant implications for life insurance, employment, lifestyle and reproductive choices."

Apart from revealing predisposition towards particular conditions or diseases, genetic testing can also provide an individual with information about their "carrier status".

This means that a test might identify genetic variants that do not have an adverse effect for a person (carrier) but can be relevant for the risk of a condition in his/her children.

Genetic tests usually require a blood sample but direct-to-consumer tests are performed using samples of saliva or cheek cells.

Professor Dawkins said that with ‘direct-to-the-consumer’ testing based in the United States and analyses performed in laboratories outside of Australia there was no way of assessing the quality of the testing or the legitimacy of its results.

"If the tests are based on limited research, the results will be unreliable," he said.

Professor Dawkins said that in Australia, most genetic testing was offered in the healthcare setting, where the patient was assured counselling, clinical supervision, and where necessary appropriate follow-up.

He said other concerns regarding the use of online tests included that:

  • consumers might be unaware that companies offering these tests could store their samples and use them at a later date for further research
  • the sheer number of conditions for which a test may check (in some cases more than 250) was not conducive to the consumer providing informed consent
  • many were based on limited research and so may not provide meaningful results
  • without proper counselling, individuals could feel falsely reassured about their future and neglect important health checks or discontinue important medications
  • they failed to provide ongoing support and follow up
  • they could be provided to non-consenting individuals such as minors.

Media contact: (08) 9222 4333

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