At-Home DNA Kit Company Gave Data to FBI

News Dna Kit Fbi Featured

Home DNA kits that can help you discover your family ancestry are popular now, with two of the most used being kits offered by ancestry.com and 23andme.com. The question is, what do these companies do with that personal data you’re handing them?

FamilyTreeDNA sold 1.5 million of these at-home DNA kits and then allowed the FBI to take a look at the data to solve crimes. Is that what these 1.5 million people signed up for when they spit into the tube?

FBI Exploits Home DNA Kit Data

Don’t get me wrong: I’m here to say there is great benefit in these kits, yet they’re being used in ways the public doesn’t realize.

I have a personal story that arose from the use of these kits. My sister tested her DNA, and ancestry.com notified her that she had a first cousin who had been adopted. This was a prior family secret no one had been aware of. The first cousin had been looking for family, and she found it in us. It’s been confirmed by the players in this story that she is our cousin.

We have met her in a tearful “reunion” and have more meetings planned with more cousins, aunts, uncles, and siblings. It’s a remarkable story.

Yet, attached to all those wonderful feelings is the question of what at-home DNA kit companies are doing with that data that is so wonderful in so many other ways.

The FBI contacted the president of FamilyTreeDNA, Bennett Greenspan, and told him his database could help solve heinous crimes. He wanted to upload the DNA data in two cases to see if there were genetic links to others to possibly generate some leads.

Greenspan knew this wasn’t what his customers had in mind when they spit in the tube, but one of the two cases involved the body of a dead child who had never been claimed. The other case was one of rape.

He said yes right away. “I have been a CEO for a long time,” said Greenspan. “I have made decisions on my own for a long time. In this case, it was easy. We were talking about horrendous crimes. So I made the decision.”

News Dna Kit Fbi Science

What to do with the DNA data resides with the companies themselves. There is no law behind what to do with this highly personal and highly identifiable data.

Law enforcement aren’t the only ones with an interest in this data. Drug companies and researchers would like to get their hands on it too. I’ll add that with ancestry.com, there’s a box to check asking if you consent to being connected to possible family members. Whether your information should be used by third parties is not mentioned.

That said, that company isn’t the one at the center of this story. The point is there is no law that governs what they do. They could do the same thing Greenspan did if they wanted but say they don’t.

“Taking a DNA test does not just tell a story about me. DNA tests inevitably reveal information about many other people, too, without their consent,” says Natalie Ram, associate professor of law at the University of Maryland Carey School of Law, studying genetic privacy.

“Should genetic databases be allowed to make up the rules as they go along?” she asks.

The dead-child case wasn’t solved by the way, but the FBI was able to determine the rape case was connected to the Golden State Killer who was arrested last year for murders and rapes that took place over decades.

Educate Yourself

23andMe, Ancestry, and MyHeritage say they do not share data unless required to by law, such as with a warrant or subpoena. But not every company has that same disclaimer as FamilyTreeDNA shows.

As great of an ending as my family story has, they aren’t always that way. Not everyone wants to be found, but sometimes they are through a family member. My uncle didn’t take this test; my sister did. Yet, now he knows what happened to the baby he walked away from in utero more than 50 years ago. Luckily, we rest knowing Ancestry won’t give our data away unless forced.

Have you taken a DNA test? What’s your story? Tell us in a comment below.

4 comments

  1. “There is no law behind what to do with this highly personal and highly identifiable data.”
    A case can be made that DNA testing and the data is covered by HIPAA.

    Of course, law enforcement and entities that stand to make money off of DNA would tie the matter in courts, arguing that DNA should be in the public domain. In the meantime, they would hoover up any and all DNA databases they can get their hands on.

    Just another way our privacy is being taken away from us.

  2. While I do agree that Mr. Greenspan should be held accountable for his actions, I also feel this article should be accurate as possible. If one has tested through FamilyTreeDNA, one would know that the person providing their DNA does NOT “spit in a tube.” Unlike Ancestry (don’t even get me started on them), a swab is used to collect one’s DNA sample. Here is more information: https://www.familytreedna.com/learn/testing-process/dna-test-kit-instructions/. Based on this, I cannot help but wonder what other information in this article may be inaccurate.

    1. The form of sample collection is a very minor issue, having been involved in other DNA tests. Is a mouth swab an option as well? Certainly. Is it the option used used for FamilyTreeDNA? Apparently it is, but that doesn’t change the point people gave up their DNA to learn about their heritage, and the owner of the site gave it away to the FBI.

      A mouth swab is how we had our dog’s DNA tested when we wanted to learn what mix of breeds he is. And a mouth swab was also used when my sister was tested to see if she was a suitable bone marrow donor for me. In none of these cases did the form of collection matter. I simply chose “spitting in a tube” because it made a better story than “swabbing the inside of the mouth.”

      But in the end? It doesn’t matter. Whether I take a DNA test (which I’m not advised to do because of chimerism) and spit in a tube or swab my mouth, the owner of the company I bought the kit from shouldn’t be giving away my data.

    2. The method of DNA collection is irrelevant. What IS relevant is the breach of privacy by the company. When one voluntarily submits one’s DNA for testing, there is a presumption of privacy. If your DNA test revealed a genetic disorder such as Sickle Cell or Tay-Sachs, would you want that fact splattered all over the front pages of major national newspapers or as the lead story on the nightly news?

Leave a Comment

Yeah! You've decided to leave a comment. That's fantastic! Check out our comment policy here. Let's have a personal and meaningful conversation.