DNA test privacyIf DNA testing is something you’ve looked into, you may have also wondered what happens with the DNA you provide to a testing service. Since we live in a world of data collecting and selling, it’s only natural to think about these things. Do you actually need to be concerned about privacy when it comes to DNA tests, though? We did the research to answer this question for you. To figure out if getting a genetic test is right for you, here’s what you should know about DNA test privacy matters before you buy a test kit.

What is DNA testing?

Before diving into DNA test privacy policies, it’s helpful to know what DNA tests are and what the testing processes look like. DNA tests can reveal similarities between the DNA markers from different people, allowing the tester to draw conclusions about their personal ancestry, lineage and ethnicity. Here’s why:

First, let’s go back to the ABCs of DNA. Deoxyribonucleic acid (DNA) is a unique genetic code that’s found in each of your cells. Simply put, DNA is what makes you you, as it acts as your genetic blueprint. The reasons? DNA is hereditary, and it has a hand in shaping your physical traits, such as your eye and hair colors, and other characteristics. You inherit DNA from your biological parents, your biological parents receive their DNA from your biological grandparents and so on. This inheritance pattern continues on through each generation, so your DNA contains genetic information that’s been passed down your lineage.

Because of the way DNA is inherited, it can be used to tell how closely related people are to one another. How? This is when DNA tests come into play. In many cases, all you have to do is to obtain a DNA testing kit, provide a saliva sample or simple cheek swab, mail your DNA samples to a lab and wait for your result. By looking at the matching DNA markers between two people, DNA testing services can determine how closely related these people are to one another. Generally speaking, the more matching markers there are, the likelier two people are related. As a result, through the DNA testing process, it’s possible to analyze DNA to determine your lineage and your ethnicity.

DNA tests can assist in other ways, as well. In recent years, DNA tests have been used to help identify any predispositions for certain medical conditions, for example. To learn more about DNA testing and testing processes, you can check out this post about how genealogy services’ DNA tests work.

Why should you care about privacy-related DNA testing matters?

As mentioned before, your DNA is unique to you. Because your DNA can reveal information about your physical appearance, health, family history and possibly even your personality, some view DNA as a significant personal identifier, arguing that it’s in peoples’ best interests to keep their DNA private. Since that’s the case, it may be worth considering privacy matters before getting a DNA test done.

What you should know about the protections in place

When you’re thinking about DNA testing through the lens of privacy, a law you should be aware of is The Genetic Information Nondiscrimination Act of 2008. This federal law, which covers the areas of health insurance and employment, was passed in an effort to protect individuals from discrimination based on genetic information. Genetic information includes results from genetic tests, genetic services, family health history and any participation in genetic research.

While this law does protect individuals from genetic discrimination in the health insurance sector and from most employers, you may have noticed that this law doesn’t cover a number of areas you wouldn’t want to be discriminated against. Because of these gaps in the law’s current coverage, certain industries, such as the military and long-term care arenas, may still be able to base decisions on your genetic information. As a result, if you’re looking toward the future, it’s necessary to take your genetic information’s privacy protection into consideration.

Read DNA test privacy policies with a close eye

When it comes to genealogy services’ privacy statements regarding their DNA tests and other products, it’s important to read through these statements with an eagle eye — definitely something to do if you want to know what you’re getting yourself into. Even if you do so, however, understanding privacy statements’ implications can be challenging for the untrained eye, according to some sources. As such, if you’re unsure about something a privacy policy says, you’ll want to contact the company for clarification.

It’s also important to note that different companies have differing privacy policies, so make sure to compare and contrast these policies when you’re looking into DNA testing services. To learn more about different genealogy services and the DNA tests they offer, check out our reviews of genealogy services.

Privacy and the way your information is stored

Again, different services follow different privacy statements, so before taking a DNA test, it’s important to read these statements to figure out what you’re getting yourself into. In the case of AncestryDNA, when you provide Ancestry with a DNA sample, your DNA and saliva may be stored by the company so that it can be available for future testing. For example, you can agree to include your information in the Ancestry Human Diversity Project, which aims to understand human history and migration, develop new or improved diagnostic tools and therapies to treat diseases and other conditions and more.

During storage, some services also try to anonymize your data. In AncestryDNA’s case, the service stores your DNA test results and sample without certain identifiers, such as your name and address. That said, it’s possible that anonymizing your personal identifiers may not be able to protect your privacy in various situations, as research studies have claimed that privacy protection can be difficult. For example, while some services have security measures in place, there’s the possibility that data breaches could occur, resulting in the loss or misuse of your information.

Your information could be shared with third parties

The DNA testing services might also share your information with third parties. These parties could include other users, advertising partners, affiliated companies, service providers and others. Do note that your results may also be disclosed in response to certain law enforcement requests. To learn the exact policies regarding how information is shared with third parties, make sure to read testing services’ privacy statements.

As an example, MyHeritage, a genealogy service that provides DNA testing, has a privacy policy that states it could disclose your personal information in “very limited circumstances.” For instance, in the case that MyHeritage is acquired, personal information will be a transferred asset. MyHeritage also notes that it uses third parties to perform certain tasks, including a DNA lab to extract, process and store your DNA sample.

Deleting your information isn’t always easy

After reading the previous paragraphs, perhaps you want to know if you can delete your information from a DNA testing company. While some services allow the deletion of information, this deletion process may not clear all your information from systems. For example, AncestryDNA will only delete your genetic information from its production, development, analytic and research systems if you request it. This means simply deleting your account will not remove your genetic information from its databases. Additionally, Ancestry’s current privacy statement also notes that your DNA test information may be viewable elsewhere after the deletion. For example, AncestryDNA may retain certain information to prevent identity theft, and backup copies of your information may still exist for a period of time for “internal business purposes.” The privacy statement also allows for your results to be viewable elsewhere after the deletion process. Copies of your results that have been stored and shared with other Ancestry users may still be viewable, for example.

Privacy policies may change

You probably already know this, but most privacy policies include a clause that says the company may change its policy at any time. It’s best practice for a company to alert you of a privacy policy change — note that some states, like California, legally require alerts — which means you should be alerted of any new policy change. Still, it’s important to understand that aspects of a company’s privacy policy can change at any time and that if it does you should give the complete document a re-read. If you spot anything you’re uncomfortable with, you may want to cancel your account.

Is completing a DNA test worth it?

While there is much to consider in regard to DNA test privacy matters, there are benefits to undergoing DNA testing services, as well. Again, DNA tests could potentially help you locate long-lost family members, discover your medical predispositions and more. Ultimately, you’ll have to weigh the pros and cons to determine if completing a DNA test is right for you.

If you’re wondering whether you should take a DNA test or not, the best next step is to do your research. Now that you know more about DNA test privacy matters, you can start by checking out our reviews of genealogy services and reading our DNA testing blog for more information.