How are at-home DNA tests reshaping our identities?

Published Feb 13, 2020, 10:00 AM

Some of life's fundamental questions include, 'who am I?' and 'where do I come from?'. As at-home DNA test kits become more and more popular, those philosophical musings have become big business. But what happens when the results are more than you bargained for? On this episode of Next Question with Katie Couric, Katie sits down with podcast host and author Dani Shapiro, who shares her shocking story about finding out, in her 50s, that the beloved man who raised her was not her biological father. With direct-to-consumer DNA testing expected to reach 100 million people in just a few years, Dani’s experience is far from unique — millions of people are about to come face-to-face with some hard truths about their histories. So what are the hugely profitable companies behind these kits doing to support customers who receive life-altering news? Katie speaks to one woman who took matters into her own hands after the company who made her test wouldn’t even get on the phone with her, turning her DNA results into a global support network for people like her. 

For more about Dani’s book, Inheritance: A Memoir of Genealogy, Paternity, and Love, click here or visit PenguinRandomHouse.com

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Hi everyone, I'm Katie Curic and welcome to next question. Who Am I? That's considered life's most fundamental question, and it's quickly followed by where do I come from? Sure both are somewhat philosophical, but in the age of rampant home DNA test kids, those questions have become something more big business. More than twenty six million people around the world have turned to home ancestry or DNA tests hoping to find out who they really are. The simple test connected her with the mom she had never met, a reunion for a mom and her son after nearly three decades apart. Her sisters, born fifteen months apart and adopted at birth, never knew each other existed until these DNA tests incredibly popular. But what happens when the news is more than we bargained for? Disturbing results, emotional fallout, and even privacy issues. So today my next question, what really makes us who we are? I think our sense of identity in the very beginning comes from the stories that were told about ourselves from the time that we can understand anything that's Danny Shapiro, host of Family Secrets, an intimate podcast that explores the power of untold Stories. Danny's also a prolific author, and the podcast was actually inspired by her latest book, Inheritance, a memoir of genealogy, paternity, and love. And the story that I was told was that I was the youngest grandchild of this illustrious grandfather and grandmother. Central to Danny's identity was her Judaism. She spoke Hebrew and also her bond with her father, the head of a distinguished Orthodox family, And there was this family history that was something to be very proud of. Um. And yet there was this sense that I had as a child of I don't fit in, I don't long and I don't know why UM. And when you're a child and you have that feeling and you have nothing to connect it to the instinct, I think our impulse is to turn that against yourself. You know, there must be something wrong with me, because I don't feel like I belong and I should belong. Danny not only felt other, she looked other two. I looked like you know, Heidi had wandered, wandered over from the Alps into the Stuttle. You know, it was like, really, when you looked at a picture of me with all of my cousins. It was like, who doesn't belong in this picture? And it was me. But I managed to feel or to tell myself that this was some sort of just strange genetic quirk of faith that I just came out looking so completely different. There's a moment that I write about in my book where a friend of my parents who is an elderly or you know, a Holocaust survivor, was over at our house one day for Sabbath lunch and she patted me on the head said, this is actually Jared Kushner's grandmother. Um. She patted me on the head, Mrs Kushner, and she said, we could have used you in the camp. We could have used you in the ghetto, a little blondie. You could have gotten the spread from the Nazis. So that was literally the story of my childhood. And then when Danny was fifty four, she randomly decided to take a DNA test through ancestry dot com. My husband was taking his own DNA test recreationally, you know, really his his kind of like he smokes marijuana a little bit like that probably was even less um purpose. Um, his parents were elderly. I think he was doing it really to kind of connect with his dad, and he just asked me if I wanted to do one too. And I'm haunted by this today because I so easily could have said no. It was no big deal to me. I thought I knew everything about where I came from, but instead something it was inexpensive. It was no big deal. He was doing it, and I said sure and so and that's that's why there was no purpose or suspicion or anything. You got the results back and it showed you were fifty two percent Eastern European Ashkenazi, but the rest was a mixture of French, Irish, English and German. Initially, did you say they got my results mixed up with somebody else? I completely did. I. Um, I initially thought that, and I thought that for a while. Actually made my husband call ancestry dot com and get a supervisor on the phone, which is something that happens a great deal in those companies these days. Um. And he was told that those kinds of mistakes are never made, which I do think is true. UM. But yeah, no, I thought this is a mistake. And then you talked to your half sister, explain how I know she's a good bit older than you. Um, and this was your father's daughter from a previous marriage. Yes, so she's fifteen years older than I am. And I had recalled that she had mentioned at one point early on in the DNA testing world that she was an early adopter of it, and she had she had done it. So I reached out to her, actually really at my husband's very strong suggestion, because I was really just kind of sticking my fingers in my ears and going, la la, la, la la, there must be a reasonable explanation here. But so she sent her KIT number. It's what it's called her results. And there is a site called jet match where you can compare to kit numbers to see what your most recent common ancestor is, in other words, what what your level of genetic relationship is. And when that came back, and um, it was in this kind of foreign language that I didn't understand. My husband did. Um. It showed that we were not related in any way, shape or farm. Correct. We were not sisters, were not half sisters. We are most recent common ancestor was many generations earlier, which all people have. You and I would have it with your Jewish mother, you know, we we all would we all would have it. So you said, holy shit, I said, holy sh it. Um, I knew that it meant that if if we weren't sisters, that my father was either not my father or not her father. I knew it meant he wasn't my father. Everything the pieces of the puzzle clicked into place so quickly that there was just this sense of of course, of course, like all of them, from Mrs Kushner to the way that I felt that sense of otherness. Even within my shock, there was also this sort of backward looking sense of oh, my god, this makes perfect sense, so a bit of relief in a way. I didn't feel relief instantly. I felt um devastated. I adored my dad. And I also knew very quickly that it meant that I'm that my biological father. It must have been a sperm donor. I knew it wasn't that my mother had an affair. Why did you think that? Because I would have thought, oh, maybe it was the Swedish milkman. Yes, yeah, that would have been a completely reasonable If you're looking at these results, the first thought that most people would have would be my mother must have had an affair. I had just enough clues, which is miraculous to me when I think about it now. I had just enough clues to be able to piece it together. Danny knew that her parents had struggled to get pregnant, and that they had sought help at a fertility institute in Philadelphia, where her mom was artificially inseminated. But what Danny would come to find out after getting her DNA results is that the sperm that was used was not from her dad. It was from a donor. It sounds crazy now, but back then, when infertility was considered private and shameful, it was common practice to mix the father sperm with donor sperm. This allowed for at least the possibility of biological parenthood. Couples were told this as a treatment, and it will help boost your chances. There was always this sense that it was the child would never know anything. It was cloaked in secrecy. Parents who underwent any kind of UM donor you know, uh donor procedure would be told go home, never tell anyone, don't tell your own parents, don't tell your siblings, don't tell your friends. The child will never know. It's better for everyone that way, and there was every reason to believe that would be the case. No one at the time could have imagined that fifty years later, finding out the truth would be as easy as sending your spit to a lab and getting the results in a matter of weeks. Once Danny found out her shocking results, it took her only thirty six hours of googling before she was looking at YouTube videos of the man who was her biological father. It will stand, I think forever is the most surreal moment of my life. Um, the first so he's he's a retired physician and a medical ethicist, which of course is another bizarre chapter. I mean, you can't make can I curse on this? You can't make this ship up? You can't. I mean we already said holy ship, So why not a few more excell um? And he he lectures. He lives in the Pacific Northwest, and he lectures quite often, and so on this YouTube video he was giving a lecture on medical ethics. And what I noticed, and I notice is too subtle a word for what I sort of it's kind of like went into my blood stream, was that the way that he was gesturing with his hands, um, is how I ester with my hands. I'm doing it right now. It's how I speak when i'm speaking, especially when I'm speaking in public. And it was also extremely familiar to me. I lecture a lot, I stand behind lecterns, I run a Q and A. He was standing behind a lectern. He was running a Q and A, and I do look very very much like him. But that's not what I was noticing. I wasn't seeing myself in this seventy eight year old man, but I was seeing a quality of familiarity that I realized I had never seen before in my life. I mean, there was no question that this was that I came from him, and yet he was a complete stranger. So do you remember emotionally it must have been so complicated what you were experiencing as you watched him. Take us back to that moment. I was shaking from head to toe. Um, I felt ice cold. Um the room. I was in a hotel room in San Francisco, and the room felt like it was tilting in, like literally the ground was shifting. Um. I remember the feeling of walking into the bathroom for the first time after I had seen his face, and looking at my face in the mirror and suddenly seeing my face, the face that I had been looking for all those years as a little girl, always having the sense that there was something I wasn't seeing. I saw it there. It was um. It wasn't comforting, it was um deeply disturbing. I mean, I walked around in a state of um kind of dizziness and breathlessness for weeks. I would say, I mean the roots of my family tree that I had understood and that I've been confident about. I mean confident in the sense that we don't we don't think about what you know, we we we are who we are, we're told we come from who we come from, if we are, and and then that's that, and we just, you know, never really consider it ever again. And suddenly now there was this whole new world, There was this whole new story, and this was this was within me. I was the story. Danny wanted to meet her biological father, but she had to convince them. It was a delicate dance to get there. And I think ultimately one of the ways that we got there is that we were each respectful of each other. I was persistent, but I was also very respectful, very conscious that I sensed he was concerned about his privacy. I think he worried that if there was me, there might be twenty others behind me. So my biological father, again a medical ethicist, had given I think a great deal of thought to this after he realized that he had a biological child in the world. He had never told his wife a fifty years that he had been a donor. It was insignificant, you know, it was. It just hadn't needed some money, needed extra money, and you know, there's the added bonus of I'm doing I'm doing a good thing, I'm helping a family. But it was promoted as kind of it's not a bigger deal than giving blood basically, which we of course know it's very, very different. So he did agree to meet me after a bit of a back and forth, and we met for lunch at a restaurant in New Jersey. He and his wife were traveling east and my husband and I. So he did tell his wife he had he told me. He told his wife instantly after getting the email, and he also told his kids. It's they they have a really lovely, very open family where there aren't a lot of secrets, and they you know, had a family meeting and talked about it. So we went, we went to lunch, and we had this four and a half hour lunch sitting in this darkening restaurant in New Jersey. UM, and I think the biggest takeaway, I mean, I had many takeaways. It was again surreal to see yourself in a stranger. UM. We see ourselves and the parents who raise us all the time, but we take it for granted. And suddenly there's this person who I don't know, but I'm seeing absolutely like gestures and traits and I'm seeing where I come from. But the biggest takeaway was afterwards, and it was in the days afterwards. It was the first time that I started to feel reconnected with my dad. I started to feel like, no, this man that I just had lunch with, he's not my dad, he's not my father. I do come from him. The language that came to me afterwards was It's like, he's the country that I'm from. And I've never set foot in that country, and I haven't climbed its mountains, and I haven't eaten its food, and I haven't breathed its air. But it's my country and I come from it, and and the people who we love and my father loved me into being my father. I think about every day my father. As I'm talking to you, I have chills up and down my arms that I've decided means that he's up there listening. Um, it's a profound soul connection. But I actually needed to meet the man that I come from genetically and biologically to have that feeling, to return to that feeling when we come back. How One woman turned her own d n A surprise into an expansive support network for others who were shocked by their results. In two thousand seventeen, Catherine St. Clair also decided on a whim to take a d n A test. She was at work when she checked her results and was shocked to find out her brother was in fact only her half sibling. I put my head down on the desk, and the emotional part of me was going, oh my god, oh my god, Oh my god, oh my god, oh my god. And the logical part of me was trying to calm myself down, saying, you're still the same person. Nothing has changed. You're the same person you were when you woke up this morning. This is just new information. You're okay, Um, But but the emotional part of me was totally freaking out. Within weeks, Catherine created a discreet and vite only Facebook group called d n A NPE Friends NPE meaning not parent expected. When I first created this group, I was expecting that I would probably find four or five more people like me and we could help each other. And I set a lofty goal. Wouldn't it be wonderful if we could find as many as twelve? I had no idea how normal this was. I felt like a freak. I felt like I was going to be viewed as a bug, and I hated that feelings. But it was actually really comforting to see people coming in droves. Our group right now is pushing, and that's just for our main group of n P SUM. We actually have over a hundred groups. We have a support group just for the mothers. We have a support group just for the fathers UM. We have regional groups so that people can plan to get together and have meet and greets, because we found that to be a very comforting healing experience to have physical gatherings where everyone can hug each other and talk. It's amazing. It's miraculous to me the amount of healing that's happening and we're still bringing people in, probably about a hundred and fifty two hundred a month. When Catherine found out that her biological father wasn't the man who raised her, she couldn't believe how little the company did to help her in this very difficult time. She couldn't even get a representative on the phone. The best she could do was message someone through her computer using the live chat feature on the company's website. When I was doing the chat with this woman, it would have been better if it had been a phone call. And with that phone call, they said, Okay, we're going to send you this packet of information. We take this phone number down right now. This is a hotline that you can call. Here is a Facebook group that you can join where you can get emotional support. UM. Here's here's a website that offers links to um mental health professionals in your area. UM. I feel like that they should have more of an obligation to provide those kind of tools and resources to these people. And they're about to be even more people like Katherine and Danny. Considering the fact that by two this global DNA testing market will see as many as one hundred million people, that's a three heard of the US population by the way, and more people, of course, means big Bucks. In two years, revenues are expected to double, topping three hundred and forty million dollars. I believe that if an organization is making a significant financial profit off of a product that is opening up these Pandora's boxes, they should feel an ethical responsibility. Legally, no, they don't have illegal responsibility, but ethically they should feel a responsibility to provide whatever tools or resources are needed to their clients to help them through this. When we come back, we'll ask one of those organizations if they can and are doing better by their customers. One of the biggest players in the at home DNA testing space is twenty three and Me. Recently through a genetic testing service, twenty three and Me they found out about each other. They found each other after they both decided to try twenty three and me, and it wouldn't have been possible without a DNA test from twenty three and Me. I was really curious about all this ancestry hype, so I ordered an at home kit from twenty three and Me. Spit into a tube okay, kind of pink because of my lipstick. I hope that doesn't screw it up, and then I sent it off to some strangers in Silicon Valley to be analyzed. Okay, I'm ready to seal it up and send it off and find out who I am and where I came from. So the Ancestry Composition Report analyze, this is your d NA UM and then we base your results on your genetic similarity to the forty five reference populations that we have. That's Julianna Centron, a customer care representative at twenty three, and me who helped me understand my results, which were not all that surprising. I'm basically half Northwestern European, mostly British and Irish with a little French and German thrown in, and half Ashkenazi jew which makes sense since my dad was Presbyterian but my mom was Jewish, but I did learn something about the Jewish half. Most people associate this with being a religion um but human geneticists have actually found that um Askenazi Jews are a genetically similar group, and so because they're a close knit population and genetically share long stretches of DNA, we're able to actually identify ash Nazi Jewish ancestry separate it from other European ancestries UM, you know, such as Eastern European or German UM because of those distinct genetic markers. But what if I had uncovered a huge family secret hiding in my DNA? Could I expect any support from twenty three and Me? Julianna says, I'd be able to get a trained customer care representative on the phone. But more than that, the company launched just last year a support page that sounds a lot like the one Catherine sank Clair laid out, and it was developed to help customers or any of their connections navigate these relationships that they learned through twenty three and Me. We worked closely with genetic counselors to gain insight into what their patients were asking for and needed, and we developed this resource UM, you know, for those that are looking for more information. It actually links to customer stories UM and these are real customers that have learned about unexpected relatives. I think it makes it so that, you know, customers finding out this type of information don't feel alone and realize that there are other people out there that you know, are kind of going through the same thing. Another thing that we offer, um you know, is additional resources within that page, things like better Help and talk Space. They're not companies that were affiliated with but we do link to them, um you know on our website through the report. Connecting customers to professional counseling sites like better Help and talk Space seems like a step in the right direction, especially when some studies estimate as many as ten percent of people who take at home DNA tests will find out a parent isn't their biological parent. That means millions of families are about to come face to face with some difficult truths, but for many, learning those truths is still worth the initial trauma. Danny Shapiro, this whole experience ants obviously changed you, would you say for the better without question. It's the feeling was initially of I don't know how to withstand this. Um. I just felt like who am I? Who am I? I'm not who I thought I was, And it moved over time to this place that was one of great liberation because the truth had been withheld from me and I had sensed that. I think it's what made me a writer. I think, whether my novels or my memoirs, all my novels thematically were in one way or another about family secrets. They all were about the corrosive power of them. Why was I writing about this? I didn't know. It just was kind of territory. I kept returning to. It's like my superpower almost. That's what it feels like to me. Now. It's really made me quite fearless in the world, and it's all so given me a sense of purpose. If you've found some shocking news from an at home DNA test and you're looking for support, check out Catherine Saint Clair's foundation mpe Fellowship dot org. You can also listen to Danny Shapiro's podcast Family Secrets, which just launched its third season. Do you hear how others have dealt with the trauma and power of their own revelations? It's really riveting. And that does it for this week's edition of Next Question. Keep up with all of our episodes on Apple podcast, the I Heart Radio app, and please subscribe wherever you listen to podcasts. Meanwhile, if you're looking for a little news guidance, you can get my morning newsletter wake Up Call every morning in your inbox. Just go to Katie Couric dot com and sign up and of course you can find me all over Instagram, Twitter, Facebook and other social media platforms. Until next time and my Next Question, I'm Katie Currik. Next Question with Katie Kurik is the production of I Heart Radio and Katie curreic Media. The executive producers are Katie Currik, Courtney Litz, and Tyler Klang. The supervising producer is Lauren Hansen. Our show producer is Bethan Macaluso. The associate producers are Emily Pinto and Derek Clements. Editing by Derrek Clements, Dylan Fagin and Lowell Berlante, mixing by Dylan Fagan. Our researcher is Gabriel Loser. For more information on today's episode, go to Katie Currek dot com and follow us on Twitter and Instagram at Katie Kurk. For more podcasts for My Heart Radio, visit the I Heart Radio app, Apple Podcast, or wherever you listen to your favorite shows.

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