Unexplainable - Should I take a DNA ancestry test?

Episode Date: May 4, 2022

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this week. The Vox audio team is working on a whole bunch of new shows right now, and we wanted to share one of the pilots with you this week. It gets into some of the core issues we talk about all the time on Unexplainable, and it's got some voices you'll probably recognize too. The show is called Explain It to Me. And it's basically a phone hotline for all your questions answered by experts and the good folks at Vox. If you want to hear more of this kind of thing, let us know. Send a note to Unexplanable at Vox.com. Okay, here's Explain It to Me. You've reached the Explain It to Me hotline.

What would you like explained? Please leave us a message with your question and tell us why this question matters to you. My question is, will be you to save America? What is cyber-com? I have actually two questions. Explain what it is. And my question is, so that's my question. My name is Meredith Hodnott, and I'm calling with a question about ancestry DNA to

So my question is really about my DNA, because it's 75% mystery. My grandma was adopted, and my mom had me on her own, and I have no information about the sperm donor at all. I've never really been interested in finding out about any potential have siblings or a dad or something. Like, that's really never interested me in the slightest. But I've always wanted to know if I was Italian or something. Genetic tests like 23 and Me or Ancestry.com or any of these things where you send in your DNA and they give you a breakdown of your deep family history, it seems to be exactly what they're selling. And that would be really cool. It's a question I've had for a long time.

But I'm also kind of wary about giving my DNA to a private company. So should I take a DNA test or not? This is explained it to me. It's a show where we answer your questions about everything. I'm Brian Resnick, and I cover science here at Fox. This week our call is actually coming from inside the house. It's from Unexplainable Senior Producer Meredith Haudenot, who wants to know what she can learn from her DNA,

and also what she might be giving up in return for that knowledge. So today, we're going to find out. find out how tests like 23 and me or ancestry work, we'll explain what Meredith might be able to actually get out of her results. And then once we get all of that, we'll dive into whether these tests have any big trade-offs that we need to consider. Hey Meredith. How long have you been wondering about this? I think this has been a question I've had for a really long time. I was thinking back on it and like, it was always my icebreaker as a kid. meeting new kids on the playground is like, well, guess what? I don't have a dad. Like, it was my

like fun fact about myself. So I always owned that. That was never a problem for me. But I do remember in fourth grade, an art teacher asking me what my background was. And I made up that I was Italian. And then that led to all these questions that I was like, uh, she's like, oh, we're in Italy. And it's like the north part. It's a direct. That's a place, right? I feel like there's sort of a tension there between like, no, I don't want to know specifics. I don't want to have information on a sperm donor that really has no effect on my life. But the understanding of, I don't know, where my people came from, even if they're not represented by actual people, is really fascinating to me. Yeah. Do you think of it now as like a bit of trivia? Like you would

like to have that playground answer? Or is it, do you think this would yield some meaningful insight about yourself. Yeah, I mean, I guess on one hand, sure, it totally is trivia. It's not going to affect my day-to-day life. I won't magically become part of some culture that I have no real lived experience in. But my wife and I are thinking about having kids and those kids will come with genetic ancestral stories. And that's got me thinking about my own. Yeah. And do you, are you feeling about like, icky about maybe doing this? Like, are you feeling like this is a good idea for, like, either safety or security reasons? Yeah. I mean, like, I am worried about giving my, like, DNA information to a company broadly. But then also I've heard all these stories about half

siblings coming out of the woodwork and, like, very chill if that's what you want out of something. But I, like, definitely do not want that in the slightest. Yeah. I feel like in my head and growing up, like my personal narrative has always been that I've just been this clone of my mom. Like, we look exactly like people have described us as like walking hugs. We just have a similar vibe. And like my whole family too, it's very small. I grew up with these four badass independent women and they like decided to have another badass independent woman. Like my personal narrative has always felt so complete that I just have no interest whatsoever. In fact, act like a very hard, like, inversion to this idea of, like, changing that narrative in some way.

You like the size of your family the way it is so far, and you're not looking to let more people in at this right now. Yeah. Yeah. I don't know. I've always liked my origin story. It makes me feel like a superhero. So that's kind of interesting. You're kind of looking for, like, the far history origin story, but not necessarily, like, the near history origin story. Totally, totally. First off here, just to acknowledge that you're definitely not alone in having these questions. There are tons of people who seek out these tests, and they all come with potentially different reasons.

Some people might be adopted. Some people just might not have family records, or their family records could be clouded by complexities of migration or slavery. There's a lot of ways that family stories get buried or lost over time. But no matter why you're seeking out this information, and really, no matter which company you choose to use, the tests here work pretty much the same. So let's start with that. Let's start with how these tests work and what they can actually accomplish. Okay. Basically, these tests are sampling your DNA.

So if you do take one of these tests, you're going to spit in a tube. It's already a strike one against it. I don't do spit. I'm told it's like a disturbing amount of spit. Like you really need to give them a lot. Oh, God. But you spin the tube and then this gets sent off for a DNA analysis. And they're not looking at every single letter of your DNA.

That would be overkill. Because that's like billions, right? Billions and billions. Yeah, there's something like three billion-based pairs of DNA. and then one thing about DNA between humans is most of ours is exactly the same. Right. We're all actually remarkablyly very similar. So what these tests do is they look for places in your DNA that commonly vary from one person to another.

And so they're looking for the, they're called single nucleotide polymorphisms or snips, which is, you know, if you think about DNA as a map, it's like points of interest. It's the points that show our differences from one another. So these snips can tell you something. So some of these snips might be correlated with certain health outcomes. So sometimes these kind of DNA tests can tell you about a risk for certain cancers like breast cancer, or they can tell you like a certain propensity for, you know, losing your hair one day or, you know, some of these things you don't need genetic tests for. But actually some of these things you might be interested to know if some of these snips are correlated with a high.

higher risk for heart disease. Yeah, I mean, that makes sense that your DNA could tell you, like, all sorts of medical information about yourself. But I'm curious, like, when it comes to sort of, like, ancestral heritage, you know, how Italian am I or if I am, you know, who knows? Like, how does that part of these tests work? Yeah, yeah. Just as there are snips that tell you about health, there are snips that tell you about

who you're related to. And basically, these companies will compare you to known database. of people where they have their DNA and they have like a known ancestral home. And what these companies will do is like basically find who you're closely related to in their databases. And then from there they kind of make guesses of like, you know, your DNA looks like people who are from Italy. But you also have DNA that looks like people from Germany. it's basically connecting you to stories that people are telling about themselves. So in these databases, people have their stories of, oh, we come from this little town.

And basically by these databases, by these companies, like saying that you're somewhat related to that person, it's just like letting you in on that story. And I know for some people whose histories have been erased or whose histories are hard to find, this can be really meaningful information. But I do want to caution you here because these companies, they really give you a false sense of accuracy. So when they say you're 4% Italian or 30% Nigerian, they're just kind of making a guess about how closely the SNPs in your DNA resemble others in their database. Yeah. It's not like there's this conclusive, objective, scientific idea of like you are officially Italian.

Yeah, yeah. It would actually probably be a little problematic if there was like official definition of, different ethnicities. But your results that these companies give you can change over time as these companies like change their algorithms and like get more people in their database. So for a long while, I think 23 and me was really bad about matching people to specific countries in Africa just because they just didn't have the databases of what those DNA profiles look like from people in Africa. But actually what wouldn't be squishy from these things is like actually finding real relatives. I think it's pretty much undeniable if you get matched with someone who seems like a

sibling or a parent or a first cousin. And I think this is kind of an interesting maybe thing about your questionnaire because this thing that you don't want is actually the thing that these tests can give you most clearly. That is if other family members have also signed up for these things. Yeah, I mean, like I could definitely see why that would be super appealing to some folks. It's just, you know, Not appealing to me. Yeah, so that would definitely be a downside for you. And there are other downsides here that maybe everyone who might use one of these services might want to think about. What other downsides?

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We've got another expert here on the line. Jen, can you introduce yourself to Meredith? Dr. Jen King. I am a privacy expert. I've been researching privacy issues with information for that better part of 15 years. and I'm currently the Privacy and Data Policy Fellow at the Stanford Institute for Human-centered artificial intelligence. Thanks for coming on to help me answer my question.

Sure. So I actually wrote part of my dissertation, which was not that long ago, on genetic testing services, which is why I know kind of more about this topic than maybe just kind of the casual privacy expert. And so first, I just want to say that I'm very empathetic with where you're coming from. When you have all these unanswered questions and there is something dangling in front of you that promises to potentially answer some of them. It's like, of course you want to do that. Like, it's reasonable. And when we try to think through, like, whether to take these tests or not,

some people can be very dismissive and just say, oh, no, no, no, why would you ever do that? It's a potential risk. But I think that the kind of human issues involved, the family issues, are really not to be ignored because they are important. And so there's a difference from someone who's trying to answer these questions than I think to some extent how these tests are often sold, which is recreation. Right. You can find out if you sneeze when you look at bright light.

I didn't know that already from just looking at bright light. Jen, what is your overall take on is this information worth it? Right. That is the million-dollar question. But, I mean, I think Brian is right in that if you look at the ethnic ancestry part of it,

you're probably not going to get a big lightning bolt answer. But if you're pretty sure you're of, you know, northern or eastern European ancestry, it's like, well, you're probably just mostly going to find, like, that's what you are. And whether you're, you know, 20% Italian versus 40% Italian, it's like, how much is that going to end up, like, changing your whole, like, perception of yourself? I've had the most experience with 23 and me. And I know on that platform in particular that if you wanted to look for relatives that share your DNA, you would have to opt into that. I presume that is mostly the case on other platforms as well, but I would always be

be very careful if that's a concern of yours at all before agreeing to use one of those services to make sure you understand that depending on the service, you might automatically be opting in to share. And there's been so many documented stories of, yes, people finding people they did not know they were related to uncovering, you know, half siblings they didn't know existed. A lot of times those have been positive stories. But if you're worried at all about kind of the emotional impact of that, then that's a reason not to dip your toe into that pool. Right. Yeah, but if you do end up in the deep end, aren't there other sorts of privacy issues to deal with? That's a complicated question of what 23 and me or any of these companies are doing with your DNA.

Part of the uncertainty with doing this is that we don't have any, you know, we have very, very narrow legal protections. And so the things that concern me are if you do it and you contribute your data to one of these services, and then they go out of business, what happens to that? It's a lot of very personal data. It's unique. That's uniquely identifiable. If you're not assuming you're going to have any biological children, then I think it's a little bit less of a risk kind of personally,

because if you're a parent, you are potentially exposing your children. The challenge here is so much of this is forward-looking. Like, yes, it's not happening today, but it's just really hard to think through, okay, what happened to that DNA sample? I gave up 15 years ago that's actually still floating. around a database somewhere. Like, where did it end up? Are there kind of non-commercial ways to get some of this data? Like, are there certain like medical practices or, you know, something that feels a little less like we're just

buying this information from a company that might do something weird with it later? I think that if you are taking one of these tests because you are curious about a medical condition, then absolutely there are much more traditional, you know, medical-focused services that may require a doctor to, you know, write the request. And certainly if your doctor makes a request, then I believe it's going to be covered by HIPAA. It's within that kind of traditional health care realm. And so, like, if you're really worried that you have the breast cancer gene

and you want to keep that private, certainly I would recommend that. If you were not interested in anything else, then I would go through the more traditional medical system way of doing this. And then it seems like there's just much more robust privacy. protections in place around medical information. Or at least any. Right. You know, just a little bit. There is a law in California, for example. And, you know, there has been efforts to kind of put together best practices. And so, you know, I think the major providers are fairly serious about this stuff. But, you know, there's always just this element of, like, you can't control everything. And so, I mean,

the biggest immediate one to me is, like, if some of them go out of business or get acquired by a company that you just wouldn't expect, you just might see your DNA being. used in ways that you just weren't fundamentally okay with. One of the newest changes that's occurred in the last couple years is the fact that, you know, law enforcement has taken a great interest in these databases. And again, some people are completely fine with that because they think it's kind of helping solve the social problem of finding criminals who have been able to escape being identified and other people are not okay with their data being kind of indiscriminately used in law

enforcement searches. You know, 23 and me touts their kind of medical research part, but there's also kind of commercial research part too. And so, like, I know in the past, I don't know if this is currently true, Procter & Gamble has been, if not one of their funders, has at least a research agreement with them. And it's like, okay, what are they doing with Procter and Gamble? Like, if my DNA being used to make the new generation of deodorants, like, maybe you don't care, but it's like you'll never be compensated for that. In fact, you're paying them. Right, exactly. Playing for the privilege to be, have my DNA experimented on.

Exactly. Could you imagine a better future here, or do you think this is always going to be a very fraught area of commercial DNA testing? I think there's possibly a way, right? And I think it's who controls the data. If you could use a kind of different approach where you stayed in control of the actual sequence data and you basically kind of licensed it to other companies rather than having it sit with them. so that at the end of the day, it remained in your control. I mean, I think that's a better way.

We do see authoritarian regimes around the world who are very interested in this data and who are using it actively right now to control certain ethnic populations. And so this is not science fiction. Like, this is actually happening today. China has been oppressing their weaker population. And one of the ways that they've been doing that has been through the identification of Uyghurs through their DNA. And so being able to use that as a tool of kind of social control is as terrifying.

I mean, you can imagine all sorts of populations around the world potentially being singled out because they have that genetic marker. How do they get their DNA and then how do they monitor them with it? Well, I don't think you're given a choice. You're forced to give it. The collection of DNA in any kind of context where you've been arrested, is a big concern because we just had this issue here in San Francisco where primarily women were agreeing to have rape kits collected after a sexual assault. Their DNA was being included in the

database with their attacker's DNA. And so you had this kind of taking of your personal DNA without your permission. And the reason this became an issue was that one of the women who had given up their DNA for this rape kit was then identified at a potential crime scene. Several years. years later because she was in the database, even though she shouldn't have been in the database to begin with. Yeah. So those are scenarios where you don't have a choice, but Meredith here does have a choice. Absolutely has a choice.

Yeah. And so Meredith, like hearing this, how are you feeling about these tests and your original question? Yeah. I mean, I feel like I was already a little wary. And if anything, now, I'm more wary. I'm sorry. Oh, no, no, no, no. I mean, I feel like the downsides just seem so huge and unpredictable, whereas the upside is like,

oh, do I get to like claim part of an ancestry that I actually don't have a cultural background in? Like, if that's the only upside here, it really doesn't seem like unequal footing to the potential downsides. You know, those are definitely real downsides, but do you still see any upsides here that you, still would feel a little like remiss if you never learned? Yeah, I don't, I don't know. I don't think so. But I could see that being really different for somebody else. Like, maybe this information could be super meaningful and would make a big difference in

somebody's life. And they would have to make a very different calculation. But for me, like this, the story of my mom and her generation and the generation above that, like. it's enough for me. And I feel super fortunate that that's my family. Yeah. Maybe one last wrinkle on this is something like,

so you've been talking about this in terms of not wanting to look for someone, but what if someone was looking for you? Yeah. I mean, I feel like that honestly feels like the Pandora's box. The thing I couldn't take back is like if I am in one of these databases, even if I'm not connecting those dots, my dot is out there to be connected. And like that, that feels like a little worrying to me, definitely. Would I want to be found?

No. I just really don't want that. And I don't know if that would, like, be because it would change that superhero clone origin story that I like to tell about myself. like the facts wouldn't have changed. It would just be very different, you know. And I feel like in some ways less connected to the choices and wishes my mom had to bring me into the world by herself. I find that really powerful and empowering. And obviously there are genetics in there that help make that story possible. But that doesn't necessarily mean that it has to be a part of my story. Well, I was just going to say, like, a lot of technology.

Just because suddenly we can do these things doesn't always mean we should do these things. Totally. Well, I think the final line is to Meredith. So did we answer your question and what are you going to do? Absolutely. Thank you both for your time. I feel much more grounded in the knowledge to make the decision that I probably won't. Send in a gross amount of spit through the mail to a private company.

but it has made me really think about, like, as I move forward with my own family, like what part of genes and DNA and ancestry are going to be a part of the narrative that I pass on to future generations. We can still, like, make pasta like old world Italian grandmother. Oh, yeah, absolutely. Bring me into your Long Island home, Brian. Thanks for listening to the first episode of Explain It to Me. We want to hear from you. What did you think?

Send us an email at Unexplainable at Vox.com or leave us a message at 202-68-5944. This episode of Explain It to Me was produced by Jillian Weinberger. It was edited by Catherine Wells with help from Meredith Hadnott, Brian Resnick, Bird Pinkerton, Manding Wynn, and me, Noam Hassanfeld. Sound design and mixing from Christian Ayala, scoring from Christian and me, and fact-checking from Richard Seema. Unexplanable is part of the Vox Media Podcast Network,

and we'll be back next Wednesday.