Take Home DNA tests – Fun or Folly – Part 1
May 10, 2019

DNA Test Privacy RisksAt Home DNA tests (e.g. 23andMe and AncestryDNA) are all the rage.  DNA test kits were gift of choice in many families this past Christmas.  In fact, it is reported that 1,500,000 of the take home kits were sold on Black Friday weekend alone.  While the idea of learning your ancestral roots may be intriguing, utilizing a home test kit is not without risks.  The inherent risk is significant enough that the FTC issued a warning earlier this year cautioning consumers about the privacy (or lack of privacy) implications of test kit results.  The FTC cautions potential users to carefully investigate the privacy policies offered by the different company’s and advises buyers not to automatically accept the company’s security settings. And the risks involved with at home DNA testing results go beyond privacy issues so, before signing up, potential users need to be sure they are prepared for what the tests may reveal and the fall out of such revelations.

Before submitting your DNA to a company, as cautioned by the FTC, prospective users should consider the privacy risks.  What will happen to your test results?  Are the results forwarded only to you and then destroyed or are they shared with other organizations?  Most companies work diligently to protect your information but the companies are subject to hackers.   Additionally, companies can and actually do sell your information to third parties. Pharmaceutical Companies are reported buyers and one large pharmaceutical company has recently acquired a $30 million stake in one of the popular DNA test companies.

It is true that DNA companies cannot share your test results without your consent.  Interestingly, reports show that 80% of users actually consent to such sales. This high consent rate may be due to the complexity of the agreements signed by users.  Or, perhaps users simply do not realize what they are agreeing to or perhaps they truly do not care if their results are shared or sold to third parties.  Whatever the reason, users should understand the policy of the DNA company they choose so as not to be unpleasantly surprised when they learn results have been shared.

Understand too that even if you read the agreement carefully and make clear that you do not consent to the sale of or distribution of your test results to, there is still a possibility that law enforcement and the Federal government can pressure genetic testing companies into sharing your DNA results. Companies will defend customers and try to protect a user’s privacy but subpoena power is available to law enforcement and this is clearly an area of law that is still in the developing stages.

Keep in mind, too, that when you provide your genetic information to a DNA testing company, you are not only providing information about yourself but also about your relatives.  And when your relatives (even those very distantly related) provide information about themselves, they are providing information about you.

These privacy issues can be managed if the consumer is aware of the potential problems and enters into agreements knowingly.  However, privacy concerns are only one consideration.  These take home tests provide information to the user and the user’s family that can have far reaching implications and significant unexpected impacts.

Read more about the risks of DNA take home test kits and their risks →

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