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

A significant concern for many potential clients revolves around the privacy implications of submitting their DNA to testing services such as the two major test services, Ancestry and 23andMe. We will also discuss Family Tree DNA (FTDNA), My Heritage DNA and Living DNA. We will explain how these platforms handle your DNA and the measures you can take to safeguard privacy during the testing process.

Starting with AncestryDNA (with over 28 million users in its DNA network), the company prioritizes your privacy by anonymizing your data once your sample is dispatched to their third-party laboratory. They adhere to a strict policy of not sharing any identifiable information associated with your genetic or health data with external parties unless you provide explicit consent.

What does this mean for you?

Your data is anonymized using a unique identifier, which is not linked to your name or address. Consequently, the personnel handling your sample in the laboratory remain unaware of its owner. If you wish to enhance your anonymity further, consider registering under various options. For those primarily interested in connecting with biological relatives, using your birth name (if known) is advisable, as it will only be recognized by your biological family. Alternatively, you can register using your initials or a username, which adds an extra layer of security to your personal identity. For maximum anonymity, consider creating a completely new username that is not indexed by search engines, ensuring it cannot be traced back to you.

We encountered a situation involving an individual who shared the common concerns expressed by many regarding privacy. To address this, we advised him to register his DNA kit using the birth name listed in his non-ID, a name known only to his biological relatives. Remarkably, this name was recognized by his top match on Ancestry, who turned out to be a half-sibling searching for their adopted brother. This connection allowed him to engage with her immediately, bypassing the need to determine their relationship, and he successfully removed his sample from Ancestry the following week.

Ancestry, like 23andMe, prohibits law enforcement from accessing their database. If you have concerns about your DNA being utilized in legal matters, these two platforms are the most suitable options for testing.

What about the privacy issues associated with 23andMe?

23andMe (with over 15 million users) adheres to stringent privacy policies akin to those of AncestryDNA. They do not disclose genetic or self-reported information to employers, insurance providers, public databases, or marketing firms without your explicit permission. This means you maintain control over what information you share and with whom. Additionally, like AncestryDNA, you are not required to use your full name when creating your account.

FamilyTreeDNA (FTDNA)

FTDNA (with over 6 million users) also adheres to a stringent privacy policy. Your sample is de-identified when added to the database, and the only identifying information shared is what the user chooses to share (name, e-mail address). They do allow Law Enforcement access to the database but allow users to ‘opt-out’ of Law Enforcement access.

MyHeritage DNA MyHeritage (with over 6 million DNA kits in its database) again follows a stringent privacy policy, they also prohibit Law Enforcement access to their database. Their TOS (Terms of Service) explicitly state that Forensic profiles cannot be uploaded to their database. The only information shared with other users is what is provided by the user uploading or testing at this site.

Living DNA

Living DNA (300,000 users) follows the same type of privacy policies as the other databases, and they also restrict Law Enforcement access. Their TOS (Terms of Service) state that they will only comply with Law Enforcement access through a court order, subpoena or warrant.

What is GEDmatch?

We are including GEDmatch in this discussion because it's an open database where individuals who have taken direct-to-consumer tests (My Heritage, AncestryDNA, 23andMe, FTDNA etc) can download their Single Nucleotide Polymorphism "SNP" data and upload it GEDmatch for a more extensive match list. It’s free, and users can create an account, upload their SNP data and be compared to users who have done the same from other testing platforms. There are a variety of tools to examine your DNA matches, view your admixture, and other useful research tools. It should be noted that every kit uploaded into the GEDmatch database is automatically opted-in to Law Enforcement access for Unidentified Human Remains cases (John or Jane Does). The user does have the option of opting out of Law Enforcement matching for violent offender cases (murder, rape, etc). The most useful part about GEDmatch is if a person has tested at one specific DNA site, such as Ancestry, you can upload your raw DNA and compare against other individual uploaders who have tested on sites such as FTDNA.

What if you locate your family and no longer wish to have your DNA online?

The great advantage of both platforms is the ease with which you can delete your DNA file from their databases. If you have achieved your goals or simply reconsidered your decision, you can remove your kit at any time.

Taking a DNA test can be daunting for some individuals, but this article aims to clarify common privacy concerns and demonstrates that it need not be a frightening experience. Your clients have full control over their DNA sample and can delete it whenever they choose, along with the option to remain anonymous.

Co-Written by Jay Rosenzweig, Founder/CEO of Birthparentfinder.com and Misty Gillis, Genetic Genealogist.

Jay Can be reached at jay @birthparentfinder.com

Misty can be reached at Misty@birthparentfinder.com