DALLAS-- Home DNA testing kits are popular holiday gift ideas and have helped people discover more about their ancestry and connect with others possibly linked by the same family tree. But like a credit card number or other important numbers and codes, one should have a good understanding about where and how their DNA profile will be used.
Many of the at-home DNA kit companies offer fine print terms and agreements about what happens to your swab or saliva sample once it is submitted.
“When your DNA is out there, you do not know where it can end up,” said Andy Sorensen with Advanced Genomic Solutions.
While at-home kits are aimed primarily at discovering ancestry, AGS specializes in determining what are the best diets, workouts, and fitness practices based on an individual’s genetic makeup. Sorensen said there is also a difference in how privacy and protection are handled when it comes to samples.
"We destroy that sample before it leaves the lab,” he said. “For us, your genetic information is just as important as your social security number or driver’s license number."
But other companies offer language on their privacy page about what information could potentially be shared with third parties. While typically they assure no personal information will be shared, Sorensen said there is a distinction between personal information and genetic information. The samples and DNA profiles could be valuable in medical studies and to pharmaceutical companies.
Yet as we have seen with Facebook and credit card information at several big box stores, seemingly protected information can be subject to vicious hacks.
“Most of the time, (profiles) go to research but you do not want the worry of it ending up in the hands of the wrong people or insurance companies.”
Last year, Senator Chuck Schumer raised concerns and asked for increased scrutiny on the business practices of at-home DNA kit companies.
In addition to destroying swab samples, AGS said they also send all test results to customers in an encrypted email to avoid hacks.