The National Health and Medical Research Council (NHMRC) is urging Australians to exercise more caution when ordering direct-to-consumer genetic testing kits such as 23andMe, Navigenics and Family Tree DNA. Many of these companies are based overseas and may not meet Australian standards for quality and reliability for medical laboratory testing.
The new position statement comes in conjunction with an information resource on the NHMRC website that explains why consumers need to be careful when undergoing DTC genetic testing. The geographical location of the company needs to be considered as well as potential implications for obtaining risk-rated life insurance.
The NHMRC also warns that your genetic results could be sold on to pharmaceutical and other companies. While consumer privacy laws apply to DNA laboratories in Australia, these protections do not apply in other countries. It's therefore difficult to determine whether your privacy is being appropriately safeguarded by these overseas companies.
Most importantly, your genes alone do not determine future health and need to be considered in the context of your lifestyle, environment and age. These factors are unlikely to have been assessed in an overseas genetic test and therefore should not be used as the sole basis for clinical decision making and health care.
Finally, there's an outside chance that you may learn something unexpected or unwanted about you or your blood relatives. Some doors are better off left unopened.
“Direct-to-consumer genetic tests are being taken up by an increasing number of people who are curious about their ancestry or interested in learning about their predisposition to certain health conditions,” NHMRC CEO Professor Warwick Anderson said in a statement.
"However, consumers should be aware of the implications of using genetic tests which may preclude the advice or involvement of their doctor. Consumers should be cautious about the accuracy of some of these tests and be mindful that while genetic testing may offer an indication of predisposition to a particular health condition, results should not be treated as a definitive diagnosis."
Lifehacker can personally attest to the inaccuracy of DTC genetic testing. Our night editor Elly Hart signed up with 23andMe a few years ago. She was less than impressed with the results.
"It’s not until after you pay the money, send off your sample and get the results back that you realise that most of the data is irrelevant to you," Elly explained at the time.
"[My] data was based on the assumption that I am of European ancestry, and between the ages of 40 and 79. There was no option for other ethnicities, because there are “comparatively few studies looking for genetic associations in populations that form a minority in the countries where much of the latest research takes place".
"My suggestion is that unless you have a specific reason behind your motivation, don’t bother with genetic testing services, especially if you’re not of European ancestry and you’re under the age of 30."