Consumer genetic tests and loss of privacy: 'It’s often the price you pay'

| | June 14, 2018

For a few hundred dollars and a spit sample, you too could take a journey of genetic self-discovery. You may learn some things, but what are you giving away?

The direct-to-consumer market is “a bit of a wild ecosystem right now,” says Robert Green, a medical geneticist at Harvard Medical School who consults for the testing companies Helix and Veritas Genetics. The results can be enlightening, or at least entertaining. But consumer genetic testing also comes with inherent risks, privacy loss being one of them. “It’s often the price you pay,” Green says.

Many consumer genetic testing companies provide lengthy, yet vague, privacy statements written at a college reading level. That makes reading the fine print a slog and deters consumers from doing it. An analysis of the privacy policies of 30 consumer genetic testing companies found that most did not meet international transparency guidelines related to confidentiality, privacy and data use.

[T]he real privacy risk for most people lies in ancestry testing, [bioethicist Kayte] Spector-Bagdady says. Consumers often don’t realize that their genetic data could be combined with the personal information they share in surprising ways, unintentionally revealing more about themselves and unsuspecting family members.

Potential customers should “go in with eyes open,” Green says. That means shopping around, reading the fine print and being aware of how privacy risks may affect you, now and in the future.

Read full, original post: Privacy and consumer genetic testing don’t always mix

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