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5 Critical Questions About At-Home DNA Testing

August 14, 2018
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There is a wide range of companies that offer direct-to-consumer DNA testing. These services may help you trace your ancestry, locate long lost relatives, and find out if you are predisposed to certain health issues. While this information is fascinating and even potentially life-altering, it is important to carefully consider the legal, emotional, and security implications. Here are five critical questions to ask before you send your DNA off for testing.

  1. Who will have access to your genetic information? Many of us click through online user agreements without reading or fully understanding them. In the case of DNA testing, it is important to review the terms and conditions carefully. You should know who owns your DNA sample and results. You should also have a clear picture of who will have access to your sample and results. For example, some DNA testing companies partner with drug makers to gain access to valuable genetic information, which can be incredibly valuable for research. Some companies allow you to opt-out of sharing your data with third parties but it is important to review the terms carefully to understand your rights.
     
  2. Consider the unintended consequences of genetic testing? Recently, direct-to-consumer genetic testing has helped police solve several high profile cold case murders. While this is an extreme example, consider how finding a long lost relative could impact estate planning or create an unexpected claim on an inheritance. Also, keep in mind that these tests are not designed for medical use. A recent study indicated false positives may occur in as many as 40% of results. If your results indicate you may be predisposed to a particular health issue you will need to follow up with your physician, which may cost you time and money.
     
  3. Are the testing company’s claims backed by science? With a large number of companies competing for a piece of the genetic testing market, it is important to beware of dubious claims. While these tests can provide a great deal of interesting information, it is important to do your homework and recognize the limitations. The FTC offers an excellent primer on the direct-to-consumer genetic testing.
     
  4. What are the regulations governing genetic testing? In the U.S. the Genetic Information Nondiscrimination Act (GINA) of 2008 limits health insurers from discriminating based on genetic testing. GINA also, “prevents employers from using genetic information in employment decisions such as hiring, firing, promotions, pay, and job assignments.” Last year, Canada passed the Genetic Non-Discrimination Act, which grants individuals explicit control of their own personal information. Written consent must be provided by anyone willing to disclose their own genetic information. Given the recent popularity of direct-to-consumer genetic testing and the fact that new legal issues are just beginning to arise, these laws may change. If you have any questions, contact your LegalShield provider law firm. Your provider law firm information can be located on your LegalShield mobile app or through the “Ask Erin” feature on www.legalshield.com.
     
  5. Will your information be secure? Keep in mind that nothing stored online is completely secure. In addition to data theft, security experts have warned that hackers could potentially alter test results. Altered data could impact medical care and create potential legal complications. Carefully research security policies when selecting a testing company. What is their track record? Do they spell out their security policy?