With the at-home DNA testing company 23andMe filing for bankruptcy, what happens to all the data millions of Americans handed over? And how should you approach the family you've found through sites like these? If you have a question, give us a call on 1-800-618-8545. Or send us a note here. Listen to Explain It to Me ad-free by becoming a Vox Member: vox.com/members. This episode was produced by Hady Mawajdeh, edited by Miranda Kennedy, fact-checked by Melissa Hirsch, engineered by Patrick Boyd and Brandon MacFarland and hosted by Jonquilyn Hill. Photo of 23andMe Ancestry + Traits Service DNA kit by Tiffany Hagler-Geard/Bloomberg via Getty Images. Learn more about your ad choices. Visit podcastchoices.com/adchoices
Chapter 1: How did Hannah find her long-lost father without a DNA test?
Hey, it's Hannah. My question is... How do you find a lost relative?
That definitely got my antenna up, so we gave her a call. It turns out she was looking for her dad. I always knew my dad was out there somewhere. When she first reached out to us, she'd never met him.
So I was raised by my mom. She was a single mom. It was pretty much just us two for a lot of my childhood. For a while, we lived with my grandparents, my aunt, uncle, and a couple of cousins. I knew my dad was out there somewhere, but I never really gave too much thought about it because I did have like a pretty full just like home life, I guess.
What did you know about your dad growing up? Did you know him at all?
I only have like one memory of him, honestly. I think I was six and I was riding my bicycle outside and he drove down the street and I didn't know who he was. And he said, hey, Hannah. My mom was like, that's your dad. Come inside. And that was kind of the first time she kind of told me the story.
She kind of just explained it to me that, you know, they were young when they had me and they had a lot of differences. And she just... Thought she was making the right decision to kind of do it on her own. But she never intended for it to be like a permanent thing that I would never know him.
How did you feel about that growing up? I mean, knowing that you had your dad out there, but not really having that relationship with him.
It always kind of felt like a mystery. And I think it's kind of a funny feeling to feel like there's this mystery about yourself. Like, I don't quite look like my mom's side of the family. I have curly hair. I have, like, different color eyes. So I was kind of just wondered, like, who do I really look like if I don't look like my mom's family? I knew my dad is from the Dominican Republic.
So I always, like, you know, just growing up in New York City, such a vibrant culture here. And I'm like... Wow. I wonder, like, I just have questions like, where in DR is my family from? Just questions about that. And the other thing I knew is that I had two half-brothers from my dad. So just wondering, like, wow, what are my brothers like? What it would be like to have siblings?
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Chapter 2: What are common feelings and challenges when reconnecting with a lost parent?
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We're back. If you've used at-home DNA tests to find out where your family's from or your genetic information, you might have some questions right about now, especially around privacy. Because 23andMe, one of the companies behind these at-home tests, has filed for bankruptcy. I called up Emily Mullen, who covers biotech for Wired.
I asked her to start by walking us through the history of these at-home DNA tests.
Yeah, so we're going to go back, actually, a couple decades. So there was something called the Human Genome Project that was completed in 2003.
More than a thousand researchers across six nations have revealed nearly all three billion letters of our miraculous genetic code. I congratulate all of you on this stunning and humbling achievement.
And this was the culmination of 13 years of research to sequence the entire human genome.
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Chapter 3: How can you approach new family members respectfully after finding them?
So fast forward and 23andMe's declared bankruptcy. What exactly happened? How did we get there?
Yeah. So despite selling a lot of tests over the years, this might come as a surprise for listeners to learn. But 23andMe has never been profitable. They never figured out how to really monetize the data. Oh, wow.
So what can you do if you've submitted your DNA to 23andMe, but you're like, wait, what's going to happen to my data? Is it going to go to like TBD company? Yeah.
Right. So that's the big question, is what happens to all this data now? For now, 23andMe says its existing consumer privacy policies remain in place, and the company has not changed how it manages or protects consumer data. If the company comes under new ownership, they could revise those privacy policies for new customers and new data collection. But
If you're one of those people who previously opted into your data being used for research purposes and you haven't logged into 23andMe since you've taken a test and you've sort of forgotten about it, okay, well, your data could likely be used by whoever the new owner is for these purposes.
So if you have used 23andMe in the past and you want to change the way your data is being used, you can absolutely still go and do that right now. Yeah. Like how do you delete that data? Yeah. So when you log into 23andMe's website, you go to settings in your profile. Then you can scroll to 23andMe data and click view.
At this point, if you want to, you are able to download a copy of your genetic information so that you have that moving forward. Then you can scroll to delete data and click permanently delete data. You can also ask 23andMe to destroy the biological sample it used to extract your DNA data if you previously authorized the company to keep it.
Yeah, this seems so sticky because... There aren't really federal laws protecting genetic data. Are there any safeguards out there, maybe on like a different level, a state level, something? Is there anything out there?
So HIPAA is the Health Information Privacy Act that we often hear about. That protects information only when we're talking about health entities sharing data with each other. So in this case, 23andMe is a... company that sells genetic testing kits. They're not a health entity. So HIPAA does not protect your genetic information in this case.
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Chapter 4: What is the history and impact of at-home DNA testing companies like 23andMe?
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We're back. It's Explain It to Me. And Libby Copeland's book, Lost Family, looks at how DNA technology has impacted families. I wanted to know what got her so interested in this.
Honestly, this whole question around the distinction between biological and non-biological family and roots and identity, it's everything to me. You know, I think it's so intrinsically connected to sort of existential questions around how we're formed and who we are and how much is free will and how we get to decide what to be. Has this changed the way you think about family for yourself?
Yes, definitely. I mean, spending so much time talking to people who don't have a genetic connection to the families that they were raised in, it's really interesting to hear just how much the pull of that genetic family has over you.
We also, in our family, were able to connect with ancestors in Sweden and then we traveled there and were able to like connect with a modern day second cousin of my dad going back a hundred and something years from when, you know, our relative had emigrated. And that to me made the world seem so much smaller and so much more accessible. intimate and it made history feel present to me.
It made me feel like the past wasn't over.
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Chapter 5: How much genetic information about Americans is already in DNA databases?
And so very often the best possible way is to write a letter. And when you're writing a letter, the tone of that letter is, you know, something that you want to think really carefully about because there's different ways you could go.
You could sort of flood the person with a lot of emotional connection right away because you feel like you already know them or you feel like you are so eager to get to know them. And a lot of search angels that I've talked to and interviewed will say, like, Don't do that, right? But you could share a little about yourself, share a little bit about what you're looking for.
And then if there's something concrete that you can ask for, like, I would love to see some photographs of my grandparents. You could start small and build a relationship from there, but you're not saying right away, hey, want to have Thanksgiving together.
So I want to ask you something about the caller who sparked this episode. Her name's Hannah, and she found her dad on Ancestry.com, and she found out she has five siblings. What approach would you suggest in that kind of situation?
So I've found that very often in a family, there's somebody who is willing to serve as more of an ambassador, right? For instance, there might be one sibling that she's connected with who's open to getting to know her, and very often that person can act as a conduit to the rest of those siblings. And sometimes it's really sped up.
If you just met someone after a few months of texting and talking on the phone, you might not decide to take a trip to Austin with them, but you might if they're your long-lost half.
sibling right yeah and because there is often an intimacy and such a desire and willingness to be close on the part of both people so it is often much more speeded up than other relationships because there's this sense that you're making up for lost time I think there's also this question of you know how do I ask my dad like why didn't you ever come see me without like scaring them or coming off too intense you know like you want to build this relationship and not yeah yeah how do you how do you approach that
It takes a really long time to build a relationship where somebody can explain something like that. I interviewed a woman who, she was adopted. She wasn't told she was adopted. She didn't find out until she'd had some life-altering surgery that it turned out she might not have needed if she'd known her full medical history. Wow.
When she finally did find out the identity of her biological father, she reached out to him a number of ways. He was not terribly responsive. And then she finally called and got him on the phone. And he was so dismissive. He could not at all give her what she wanted. He would not even confirm that he knew for sure that she was his daughter or that he'd even dated her mother. Wow.
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Chapter 6: Why did 23andMe file for bankruptcy despite its popularity?
I mean, but it very much matters what the secret is that is the heart of your own identity story. Because the nature of that can alter people's willingness to embrace that you exist.
I guess there's a question of what do you do with that? But I think it's also a question of... What are people looking for when they're looking to connect with new family? Yeah. You know, are you trying to figure out like, oh, where did I get my eyes? Are you trying to figure out where did I get my personality? Are you trying to figure out genetic health? All of it. Yeah. Right?
I want to see someone else whose face looks like mine. I want to see someone else whose eyes look like mine. I want to have the experience of looking... And seeing myself, the way I see myself in a mirror, in somebody else. And if you're adopted, you may never have had that experience. It's profound.
I also wonder how much we should make of the similarities we see in family that's found when it comes to personality traits, you know? Yeah. I guess it's that nature versus nurture question.
Absolutely. The danger of... the promise of DNA testing when it's used like this can be that we interpret it in a really sort of simplistic way, right? That we think, okay, DNA is destiny. But then on the other hand, you know, those of us who've grown up in, like,
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Chapter 7: What happens to your DNA data after 23andMe's bankruptcy?
like the birth family that we were born into, like it can be hard for those of us to appreciate what it feels like to live in the absence of that and what it feels like to like have someone understand you almost like on like a gut level because they share something with you that is so deep and rooted and that maybe we don't fully understand and completely explain at this point through science.
Yeah, Libby, in all of this talk of found family, we haven't really talked about managing the existing family you have. How do people juggle that desire to find out about new family members without unintentionally hurting or alienating the people who have been there for them all along?
I talked to a lot of people who were seekers, and some managed to do this intentionally. Really well. And the people who described it best said that it's incredibly reductive to think about this as like a nature versus nurture thing, right? So you can have your daddy and your dad tucked you in at night.
And he sang you songs and he put you to bed and he was there and he like fathered you and he still fathers you and that's your dad, right? There's another man out there though and to him you owe half your genetic data and he's your biological father and we don't have the language for that.
Like, our actual language has not caught up with this technological era that we're in of consumer DNA testing. And so people who've successfully navigated it have managed to maintain those relationships with, say, their dad and say, like, you still matter to me so much. You'll always be my dad. I just, I also want to know about, you know, where half my DNA came from.
And that depends a lot on their relationship with their existing parents, whether they can manage that.
Do you think at-home DNA tests have been a net positive?
people, I think, are just starting to understand the degree to which this is all governed by business contracts, not by federal regulation. And that means that a company that takes your data is going to do what is best for the company, and that may not be what's best for your data. So, I mean, do I think it can be used in a positive way if it's maybe better regulated in other places? Absolutely.
And my own family's success story of finding relatives, both in Sweden and in Ukraine, which is amazing on my Jewish side, Like, you know, it could make me cry just, like, thinking about the way in which the past is not lost to us.
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