Take Charge

Do DNA Test Kits Put Your Privacy on the Line?

February 02, 2018


At-home DNA test kits can provide a detailed glimpse into your ancestry and ethnic makeup, and may even give way to possible genetic markers and other important health information. But users should be aware of the potential privacy concerns before buying (or gifting) these genetic test kits.

"The information about us contained in our DNA is far-reaching and not completely understood yet. We know that we can estimate a person’s chance to develop some conditions, such as cancer, from looking at how certain genes are written, and in the not-too-distant future we may be able to better predict who will have what conditions and when," says Laura Barton, a Certified Genetic Counselor at Moffitt.

While there is great potential for the usefulness of reading our DNA, we are currently still limited in our ability to interpret a genome (all of a person’s DNA) in its entirety, and their genome is exactly what people provide when they mail in their sample. Some may argue that we can only further our understanding by many people participating in genetic testing, and this is true, but the testing should be taking place within the confines (and with the protections) of a formal research study. This would not only protect the participants but also ensure the integrity of the data generated.

Consumers should comparison shop, researching all of the options and thoroughly investigating the privacy policies and fine print for each genetic testing company before making a decision. If the company provides an informed consent agreement, it’s important to understand what data will be collected as well as how and with whom it may be shared, before clicking "I agree."

Who Will See Your Data?

Sharing of data should be a primary concern for individuals considering purchasing an at-home DNA test kit. "Consumers should be able to understand who will have access to genetic testing results, supplemental health and demographic information, and raw data and for what purposes," Barton said. The company should also be able to provide information about how samples are stored and for how long, as well as what research they may do in-house. If there are options for opting in or out of data sharing or research, these should be carefully considered because there may be no way to "un-share" data once released. Consumers should be satisfied that their data will be protected as a breach could have a lasting impact, especially if the information is obtained by an employer or insurance companies.

Not only may data be shared with corporations, some companies provide the option to share information with other customers. This sharing is what allows people to make connections with relatives they may never have met otherwise. While the idea of learning about a second cousin once removed in Finland is intriguing, there is also the potential to learn about a half-sibling in the next town over, coincidentally where Dad used to go on business a lot. Before permitting such connections with long-lost relatives to be made, people should consider the potential impact on the relationships they have with relatives they see every day.

Questions have also been raised about whether or not the information disclosed through genetic testing can be used against an individual, such as by their health insurance companies or employers. However, there are laws in place to provide protection from such discrimination.

Understanding Your Rights

The Genetic Information Nondiscrimination Act (GINA) is a federal law passed in 2008 that prevents discrimination based on genetic information in the areas of employment and health insurance. According to Barton, this means that a health insurance company cannot charge higher premiums or refuse to cover certain procedures because of a genetic condition. In fact, if a person is protected by GINA, their health insurer and employer cannot ask for the results of any genetic testing. However, there are limitations to GINA, and not every policy has GINA protections. Individuals with government-provided insurance (e.g., Medicare and Tricare) are not covered by GINA, and companies with fewer than 15 employees are exempt from GINA. The GINA limitation that impacts the most people is that it applies to health insurance and not other types of insurance. Companies selling life insurance, long-term care insurance, and disability insurance are not covered by GINA, and individuals should be aware of this prior to undergoing genetic testing.

Users should also pay close attention to the online account options and select carefully when deciding how public or private to keep their information when setting up an online account. This includes options such as whether your profile and image will be viewable by others online, whether users can send you private messages, etc. When setting up your online account, create secure passwords and change them periodically.

If you do have concerns and believe that a genetic testing company is not handling consumer privacy issues appropriately, the best place to turn to is the Federal Trade Commission. Users can visit the FTC website to report such concerns.