The truth about DNA test companies and your privacy
You’ve probably heard about the recent DNA test company craze. More and more people are submitting DNA samples to learn about their ancestry, genetic make-up, potential health problems and more. Although we don’t think about ordering kits from these companies and handing over our genetic make-up the same way as we would giving a copy of our social security card to a stranger, you might as well. There is a lot about this market we don’t know including what the results can be used for, what is private and what we’re opening ourselves up to.
What is a DNA test company
DNA testing can be a very useful tool for many reasons. The results can tell you estimates about your ethnicity, tell you about your ancestors’ places of origin, or reveal genetic information about your health. Some of the most popular DNA testing companies are Family Tree DNA, 23andMe, MyHeritage DNA, Ancestry DNA, and Living DNA. There are currently over 50 companies providing these services on the market today.
Most of these tests work in the same way. You start by answering a few questions about yourself, order the kit online and proceed from there. Once you receive your kit, you follow the instructions on how to collect your sample. Samples are typically collected by swabbing your cheeks or spitting into a tube. After you register your kit, you typically send back your sample and wait for the results. Due to FDA regulations, some of the kits don’t always provide medical information regarding health issues and markers for disease.
How private are your results
Although these test kits may have started out almost as entertainment to find out more information about our family trees, your data may be used for other purposes. According to the MIT Technology Review, over 100 million people will be included in the genetic commercial database over the next two years. This means that potentially millions of people are willingly giving their genetic information over to an unregulated industry. Law enforcement, insurance companies, and employers may be able to access this information without you knowing about it. It may also be used for marketing purposes.
In recent news DNA and genetic information has frequently been shared with the FBI in active investigations to compare crime scene samples with suspects or their relatives who have used these kits. Pharmaceutical companies may also be given access to this data for research and development. It’s important to note that DNA testing companies aren’t medical or insurance providers so certain privacy laws such as those enforced by HIPPA don’t apply to them. DNA testing companies are, however, held to the FTC’s protections around privacy disclosures. They are also held to some FDA standards regarding how the DNA data is used in drug and medical device research. These protections aren’t as clear cut when it comes to using genomic data that is used for medical research and treatment.
The future of Privacy Forum set out to work with eight of the leading DNA testing companies, including Ancestry DNA, 23andMe and Helix, to set up voluntary security and data use best practices. This also included placing restrictions on using the information obtained for marketing based on DNA data. Lastly, these companies started allowing customers to delete their data from the system. The catch to this is if your data has already been shared with a third party, deleting it will make it unavailable for future use but it won’t remove it from wherever it was shared to.
If you’re concerned about your privacy and what is being shared, take the time to read everything carefully and weigh the risks. The disclaimers and legal information provided by these companies are designed to be cumbersome and confusing to read. They also make it almost impossible for them to be sued. If you are just looking to find out more about your heritage and are in good health, they are generally harmless. It’s important to always read the privacy information and go in knowing how and where your data may be shared.