Privacy and your DNA – What happens to your DNA after you’ve taken a test?

One of the most complex questions we get from potential clients is about their privacy when they submit their DNA to a testing site like Ancestry or 23andMe.

So let's take a minute to talk about what these sites do with your DNA and how you can protect your own privacy when submitting the test.

Let’s start with AncestryDNA. AncestryDNA is committed to your privacy when processing your DNA sample by anonymizing your information once your sample is sent to their third party lab. They also do not share identifying information linked to your genetic or health data with third parties unless you give them explicit consent – according to their own privacy policy.

So what does this mean?

Your information is anonymized by a number or other identifier other than your name and address. So, anyone processing your sample at their lab does not know who the sample belongs to. If you want to anonymize yourself even more, you could register under a few different options. First, we recommend, if you’re searching strictly for your biological family, register under your birth name if known. This name will only be known and recognized by your biological family. Another is to use your initials – Ancestry allows you to register your account under just initials or under a username. Something that can add a layer of protection to keeping your personal identity under wraps. If you want to be absolutely unfindable – use a username you’ve never used before. Something that won’t be indexed by Google search engines and linked back to you.

We had a case of a man that had the concerns many of the public have that are talked about in this post, so we had him register the kit under his birth name that he was given in his Non-ID. A name that only his biological family would know him as. Low and behold, that name was recognized by his top match on Ancestry. A half sibling that was looking for their adopted out brother! He was able to connect with her instantly without having to figure out “how we’re related” and was able to remove his sample from Ancestry the following week.

Ancestry, like 23andMe also does not allow law enforcement searching in their database. If you have privacy concerns about your DNA being used for legal investigations those two are the best options to test at.

What about 23andMe’s privacy concerns?

23andMe has the same strict privacy guidelines as AncestryDNA. They do not share your genetic or self-reported data with employers, insurance companies, public databases or marketing companies without your explicit consent. So you’re in control of what you share – and with whom. Like Ancestry DNA, you don’t have to use your full name when registering your account either.

So what if you find your family, and have no use for your DNA being online anymore?

The wonderful thing about both sites is you can remove your DNA file from their database very easily. So if you’ve found what you’re looking for, or simply changed your mind, you can delete your kit at any time.

Taking a DNA test can be a scary experience for some, but hopefully this post sheds light on some of the privacy concerns people have and helps explain why it shouldn’t be scary. You’re in control of your own DNA sample and can remove it at any time, and have the ability to anonymize yourself.