Countless people are curious about their familial origins and decide to take a DNA test to get a sense of where their ancestors come from. A DNA test makes a great complement to archival genealogical research, and it can be a fun thing to do just on its own.
But how private are these tests? Will companies like 23andMe or FamilyTree DNA keep your personal data safe? Who else could gain access to your genetic information? You might have seen recent stories in the news about law enforcement using DNA databases to solve cold cases—and begun to wonder about the security of your personal genetic information.
Due to privacy concerns, many sources urge consumers to be cautious and well-informed when making the decision to take a DNA test.
In this guide, I’ll cover questions that you might have about genetic testing privacy. In the final section, I will link directly to the detailed privacy statements of some major DNA testing companies to make it easy for you to make comparisons.
I hope this information helps you feel comfortable with whichever decision you make!
Frequently Asked Questions
Will I be contacted by total strangers?
Not necessarily—and only if you want to be.
Generally, once you’ve taken your DNA test, you’ll gain access to your results on your profile. Then the question is: Do you want your profile to be visible to other test takers? How much information do you want to share? Can other people send you messages?
Many people hope to find long-lost cousins through their genetic matches. If you do want to connect with family members, then you’ll need to select lower privacy settings and be willing to share at least some of your profile information.
If, however, this does not interest you, then most DNA testing companies have an option for keeping your profile private.
It’s important to know the specifics for your particular testing company. In particular: Do you need to opt in or opt out of sharing information?
So, for those of you concerned about privacy, I recommend setting your profile on the most secure settings available when you set up your account. You can always loosen them up later if you decide you’re interested in finding or contacting genetic matches.
Who will have access to my genetic information?
That depends! Aside from the testing company itself (and its affiliated laboratories, shipping providers, payment processors, etc.), there are several third parties with whom some information may be shared under certain circumstances.
You might agree to share your information with researchers (either non-profit or commercial). This research is instrumental in developing new medicines, treatments, and diagnostic techniques. Generally, you’ll have the choice to opt in or out of participating in research.
As an example, 23andMe pledges not to share any individual or identifying information about you with third parties. However, they do share aggregate information with third parties. This means that your information will be stripped of your name and all identifying factors and will be bundled with other people’s data. So, any data shared will be anonymous.
Another example: Ancestry DNA offers you the opportunity to participate in research—if you provide your informed consent. In the course of this research, measures will be taken to remove identifying details.
Will law enforcement have access to my personal information?
DNA testing companies tend to avoid sharing data with law enforcement unless absolutely necessary due to a warrant, subpoena, or other governmental order requiring compliance. As an example, you can read FamilyTreeDNA’s law enforcement guidelines here.
So, it is possible that law enforcement may access your DNA results, but only if they have a valid warrant or other claim to do so.
There are pros and cons to this, and many people instinctively feel worried about potentially giving law enforcement access to their genetic information. However, bear in mind that genetic evidence has been incredibly useful not only for convicting criminals, but also for clearing innocent people.
This video (starting at around 2:30) explains how DNA evidence works, and how developments in genetic science eventually exonerated a young man named Robert Lee Stinson—tragically, after he had already spent 23 years in prison.
Could insurance companies use my DNA data to refuse me health coverage?
Thanks to the Genetic Information Nondiscrimination Act (GINA) of 2008, this is illegal in the United States.
Health insurance companies may not deny you coverage or charge higher premiums due solely to your genetic predispositions.
Need more reassurance? Read up on the specific policy of the company you have in mind: For instance, 23andMe states clearly that they do not give anyone’s data to insurance companies. Similarly, Ancestry DNA does not share any information with insurance companies without your express consent.
Could my employer use my personal information to discriminate against me?
GINA also prohibits employers from discriminating based on genetic information or predispositions. In line with this, reputable testing companies will not share your data with any employer.
Can I choose to have my DNA sample destroyed/results deleted?
Yes, many companies allow you to have your DNA sample (saliva sample or cheek swab) destroyed and your results deleted from the website. Often, this requires you to contact them and make a request.
For instance, 23andMe allows you to choose whether you want to store your saliva sample. With MyHeritage, you may request sample destruction and results deletion at any time. Likewise, Ancestry, FamilyTree, and Living DNA permit sample destruction upon request.
How secure are DNA testing company databases? Can they be hacked?
Reputable DNA testing companies take security seriously. They use a variety of methods, including: encrypting personal data, monitoring their networks for any attempted attacks, hiring third-party security experts, and training their employees in security measures.
Of course, even with all these precautions, virtually any database in the world can be hacked.
Your personal data is probably already secured in various online databases; most of us do some of our banking online, shop online, or use social media, which means that our sensitive information is already out there.
You may decide that any additional risk, no matter how small, is not worth it to you. Or, you may decide that you’re comfortable with the tiny amount of risk involved in a DNA test.
Privacy Policies: Major DNA Testing Companies
I highly recommend you read though the fine print for whichever company you’re considering. I’ve highlighted some reputable DNA testing companies below: You can find their privacy statements here:
Take the time to research potential companies to find out how they store, use, share, and protect your sensitive data. DNA testing opens a fascinating window into your family history and ancestry—but you should only proceed with it if you feel completely comfortable.