Internet gene testing just 'health horoscopes'

Opportunist internet companies are exploiting "the worried well" by marketing online genetic testing for everything from cancer to schizophrenia, says an Auckland University genetics expert.

Associate Professor Andrew Shelling, head of the Medical Genetics Research Group, said such Internet sites - he had counted 27 - were essentially "health horoscopes" and were unlikely to provide meaningful data.

They were even potentially risky because they could give people needless anxiety or false reassurances.

"My concern is medical professionals are not involved in this process at all ... and that leaves people vulnerable to advertising for unproven, unsafe and over-price products," he told delegates at the National Screening Symposium in Wellington last week.

Tests have long been available for rare mutations for diseases such as Huntington's and cystic fibrosis. Recent discoveries through the Human Genome Project have identified about 3000 genetic variants linked to a raised risk of common diseases, including cancer, heart disease and diabetes, enabling rapid diagnoses and development of some specific treatments, such as herceptin for HER2-type breast cancer.

Professor Shelling said private companies had been quick to spot a market niche. "Never have we seen a move from basic science to a commercial application so rapidly."

Most companies charge about $1500 for a genotyping kit containing cheek swabs, which clients send back in a prepaid envelope. Within six weeks they can log on to read their personal risk profile for 20 diseases.

One such service, Google's 23andMe, also allows clients to trace their ancestry and discover whether their hatred of broccoli is inherited.

Online testing was relatively cheap, accessible and apparently confidential, as the results did not appear on one's medical records, Professor Shelling said. "But would you really trust Google with your personal medical information?"

Complex results needed context and interpretation, he said. For instance, the company DeCODEme claimed to test for risk of developing bipolar disorder - but tested for only one genetic mutation when a range of genes were implicated in the condition.

Because they are registered overseas, companies are beyond the reach of New Zealand authorities to regulate. The United States Food and Drug Administration has signalled it will not act unless something untoward happens.

Professor Shelling said there was huge public demand for information about, and management of, genetic risk - but access to genetic testing in New Zealand was very limited.

"New Zealand is doing an appalling job of providing adequate genetic testing. We're well behind Australia and the rest of the world.

"But this [online testing] is an untested commercial application of what is still a very immature science."

- © Fairfax NZ News