Buyer beware: What you need to know before purchasing a direct-to-consumer genetic test

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It was once the domain of doctors with bona fide concerns about their patients’ genetic predisposition for illness. Today, advances in technology have brought genetic testing to the fingertips of anybody with a few hundred dollars to spare.

The draw is understandable. Genetic testing can help people identify, prepare for and maybe even prevent future health problems. Knowing what genes may be passed down to offspring could influence family planning. Genetic testing can even reveal sensitivities to certain foods or the mysteries of one’s parentage.

Before diving into the ever-growing direct-to-consumer genetic testing market, however, it’s important to recognize that there are inherent risks to unlocking the secrets that lie deep within your DNA.

According to a recent poll by the Office of the Privacy Commissioner of Canada (OPC), three-quarters of Canadians are indeed concerned about the notion of providing a saliva sample for the purposes of determining ancestry or one’s predisposition for disease.

A healthy dose of skepticism is good. Direct-to-consumer genetic testing involves trusting some of your most sensitive personal information – your DNA – to a company you may know nothing about. There’s no guarantee the results are accurate.

When shopping for a genetic test, consumers need to do their homework and ask questions. A new fact sheet on direct-to-consumer genetic testing published jointly by the federal Privacy Commissioner and provincial counterparts in Quebec, Alberta and British Columbia can help.

Here are a few of the key things to check:

  • Find out exactly what personal information, including biological samples, must be provided and how the company will process and protect your data;
  • Ensure the lab performing the test is certified by an accredited body;
  • Ask if your data will be shared with third parties, for what purposes and if you can opt out;
  • If your data will be used for research, ask to what end and who is behind the research;
  • Find out how long your personal data and biological samples will be retained, why and if it can be immediately destroyed once the test is complete, and;
  • Think about talking to your doctor and family members about the risks before jumping in.

Also keep in mind that your insurance company may ask you, in certain circumstances, to disclose the results of your test and that this may have consequences for your insurance coverage.

It’s a matter currently before Parliament. If passed, Bill S-201, the Genetic Non-Discrimination Act, would prohibit organizations, such as insurance companies or employers, from collecting genetic test results as a requirement for providing goods or services or entering into a contract.

If you have a privacy concern or complaint about a genetic testing company that you could not resolve directly with the organization, contact our office or that of our provincial counterparts in Quebec, Alberta and British Columbia, which have similar private sector privacy laws.

The more information you have, the better able you will be to make an informed decision as to whether direct-to-consumer genetic testing is right for you!

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