DNA Testing Companies Criticized Over Privacy Concerns

From US-based companies like 23andMe and Ancestry, to home grown start-ups such as Living DNA, these companies take a little slice of your DNA, analyse it and serve up the results to you. However, these companies are regularly faced with controversy.

For instance, 23andMe faced criticisms from the US government’s Food and Drug Administration (FDA) over testing for genetically-linked diseases. In 2013, the FDA said potential customer misinterpretation of what could be inaccurate test results, amounted to a public health threat.

The latest issue facing genetic testing companies is to do with privacy. A recent piece by Gizmodo revealed that companies such as Ancestry retain ownership rights to your DNA if you use their services. Naturally, this is disconcerting.

We turned to the Somerset-based Living DNA to ask about how it approaches customer DNA.

“Our starting point is that the customer is in charge of their DNA, and that our role is to carry out their DNA testing, to provide them with their Living DNA ancestry test results, and to store the genetic information for them. If and when they want us to destroy their DNA sample and/or delete their genetic information, then we will carry this out.”

One of the criticisms about genetic testing companies is that their privacy policies are too complicated to understand. Living DNA has made an effort to ensure this is not the case, explaining that DNA samples are only kept for 10 years unless agreed otherwise, but the company has access to the results forever, unless you want them destroyed.

As well, it says nobody outside of the company can see a customer’s results, unless the customer has consented.

LivingDNA added, "We do not sell on customer results / raw information to third parties, nor will we give anyone access to view a customer’s results without the customer’s prior written consent. The only exception would be if we were under warrant by the authorities in a legal matter.”

Still intrigued by the idea of testing your DNA? You’re not alone; predictions say the consumer genetic testing market will be worth $340 million in the next four years.

But, it’s important to ensure that you check the privacy policy before agreeing to sign away sensitive genetic information about yourself.