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#139 Dani Shapiro on her Donor Conceived Discovery

by Kira Dineen
January 15th 2021
00:00:00
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Enter the our “Inheritance” book giveaway on our Instagram More

how is it that we find ourselves surrounded by such complexity. Hello, you're listening to DNA today, a genetics podcast and radio show. I'm your host here Dean. I'm also a certified genetic counselor practicing in the prenatal space on this show. We explore genetics impact on our health through conversations with leaders in the field. These are experts like genetic counselors, researchers, doctors, authors, and patient advocates. My guest today is Dani Shapiro, who is the author of many books including inheritance, which we're gonna be chatting about in this episode. Her writing has appeared in publications like the new yorker vogue and the new york Times. She's the podcast host of Family Secrets and fun fact. She's also a sarah. Lawrence Alumni. Stick around till the end of the episode to learn about our giveaway for a copy of inheritance. Thank you so much Danny Shapiro for coming on the show. I'm really excited to talk about your book, inheritance for those that haven't read your book.

Can you share what the memoir is about? Sure, so inheritance is actually my 10th book. Um And my fifth memoir, crazily Enough um About four years ago I um sort of recreational e did a home DNA test. Um really it was my husband's idea and I just kind of went along for the ride and when my results came back, they were initially just really confusing. Um my the breakdown of my ethnicity on ancestry dot com made no sense to me. And um step by step uh over a very short period of time. Really, just a couple of days, I came to the realization that the dad who raised me had not been my biological father. And that's not something that had ever consciously occurred to me in my entire life. And over the course of um Really only a few days I was able to piece together the entire story of how that had come to be, my parents were both gone, they're both deceased.

My father died when I was 23, so he had been gone a really long time and was an incredibly important figure in my life still is. Um but I was able to unearth or you know, sort of discover I had just enough clues to be able to trace back um based on kind of a couple of hunches and also uh a close relative, someone showing up as a first cousin on my ancestry dot com page. Um I was able to um find the person who is my biological father um and to um to piece together the story of what had happened. And so when you first opened these results, I mean, you must have just been confused at first, but also just like shocked of what it could mean. I mean, what was that like that experience in your first thoughts when you saw the results, did your mind automatically go to maybe one of my parents isn't biological relative to mine or like where did your mind start going?

No, it really didn't. I mean that is such a radical thought to have if it's not something that you've ever thought before that my first thought was ancestry dot com must have made a mistake. These companies must make mistakes. That can't be true. My um, you know spit test must have gotten mixed up with somebody else's and um really it was, it was just when I look back on it now incredible denial and sort of innocence in a way. But no, it was, it took a couple of steps to get to a place where I um was face to face with the truth of what those results meant and the way that I was able to do that that listeners might be interested in is, well I thought my parents are gone. I can't ask them. Um, I have a half sister from an early marriage of my father's who is 15 years older than I am and we weren't in particularly close touch but I had remembered that at the beginning of commercial DNA testing.

She had, She had gotten her, she had gone to 2023 and me and gotten her her DNA tested mostly for health reasons. I think she was just, she's also really someone who is an early adopter of all this kind of anything, anything scientific. And um I wrote her and I said, do you have your results from your test that you did years ago and there is a way very simple way a site called Gedmatch where to sets of results that are identified only by kit numbers by actual like a stream of numbers can be compared side by side to see how closely or not closely those two um, people are related. And when those results came back they showed that that she and I were not related. And that was when I knew and that is when I felt, you know the kind of groundless nous of shock and you know, just being completely stunned to make that discovery because it's not something that you had considered earlier in life.

I mean when you were using jed match to look at you and your half sister's DNA and comparing the sequences and then the results there, was it easy to see that that was the answer that you weren't biologically related Or was it hard to decipher? Like what does this mean already related? Like how easy was that to use and figure out? Yeah, I wouldn't have been able to do that easily on my own. Uh my husband is a journalist and you know, a bit of a science geek and you know, just knows this stuff and he understood what 4.5 generations to most recent common ancestor meant. You know, I mean to the layperson, 4.5 generations to a most recent common ancestor wouldn't seem like that much when you actually just say that oh 4.5 generations while we're still related but 4.5 generations within an ethnic group. I've come to understand and you know, um I my understanding was that both of my parents were eastern european Ashkenazi and my half sisters.

You know, my father was eastern european Ashkenazi. Um everyone at that point um with um you know, within a particular ethnicity is going to be 4.5 or five generations from most recent common ancestor. So it was um I was about as related to my half sister as to someone I passed by on the street, a total stranger. But it was not to your point, it would not have been easy for me. I mean I would have figured it out. I would have looked it up, I would have educated myself, but my husband just looked at those numbers and said you are not sisters. Yeah, I think that's a really good point to say of people thinking like, oh, so you are related somewhere. But it's like, yes, if you pick any not any ethnic group that certain ethnic groups, you can see, well most people are related to some extent. I mean as humans, we're all related at some level. Um so just kind of being able to decipher that information can be challenging and then, you know, the more challenging part is just processing this. I mean one of the quotes from your book that really stuck with me was how old was too old to blow up the past rather than keep it intact.

I mean, this wasn't just your secret, but you know, your father's, your mother's, was it conflicting to start questioning paternity to family and friends? To start having these conversations and figure out, you know, what that process was. I think it would have been more of a conflict for me if my father had still been living, because it became clear to me very quickly, my parents had had trouble conceiving. It was a time in the early 1960s when infertility, particularly male infertility was a really shameful thing. You did not talk about it. It was so shameful that doctors wouldn't even diagnose it. You know, there was no such thing as male infertility, it was always, it was always the woman's issue. Um, and my parents went to an institute in philadelphia that used employed sperm donors.

And one of the things that I discovered in the extensive research that I did, you know, over the year and a half or two years in which I was writing inheritance is that a couple would have been told, go home and never tell anyone that's ever happened. Never don't tell your own parents, don't tell your siblings, don't tell your friends the child will never know. And that's for the best. And so I think that if my father in particular had been living, given that it was clearly a secret that he both, he and my mother intended to take to the grave with them and did take to the grave, you know, they couldn't have imagined that there would be a day a point in history, um, possibly even within their own lifetimes, although although they didn't survive long enough to really see where um, you could spit into a plastic violence, send it often an envelope and then, you know, there would be this thing called the internet where you know, just about everything is discoverable and, and and you can find things out.

Um, they couldn't have imagined such a future, but other than my parents and again, my father in particular, um, I had no misgivings about digging in and researching and trying to discover everything that I could because like a really important distinction I want to make is, you know, if if if someone is we we are formed by the stories that were told from the time that we are very, very young. Our identities are formed by the stories that were told. And so say if someone is an adoptee and the story that they've been told from the time that they are old enough to hear stories is you were adopted, we love you very much. Um this is the story of how you came to us, your adoptive parents then that child grows up knowing that story.

And I'm not saying that that is not complicated and difficult. And I know a lot of adoptees have feelings of um in the adoption world, it's called genealogical bewilderment, where of a desire to know where they come from and from whom they from, whom they come, but they always knew. So assuming that they were told, there also are stories that are still tumbling out of late discovery adoptees who never knew. Um but that that feeling of believing a narrative, I was told a narrative all my life that was a lie, it was a secret. And so making that discovery in midlife and having to kind of in a way undo and rethink everything that I had known about my own history was really traumatic and complicated and and and shocking and also, You know, I said before, I'm, you know, the author of 10 books as a writer, I had always written about secrets.

I wrote whether it was my novels or my other memoirs, it was like I knew there was a secret and I was just digging and digging. I just wasn't digging deeply enough or didn't even know what I was digging for. And so to make that discovery, and also to be a writer where that's literally what I do, I excavate, you know, that's I try to put stories together, that makes sense. I just was utterly compelled to do that and you documented so beautifully in the book of, you know, I feel like we're right there with you as you're discovering the next part and figuring it out and working with your husband and you know trying to figure out like what does all of this mean is you know, you're getting to that answer and I mean then at one point, you know, you write that it was 36 hours from the point of finding out, you know, your father wasn't your biological father to then having someone that was a potential match and I was just like 36 hours like you know, that's just wild what short amount of time you're thinking and taking all of this in during that time.

Did you ever question if you wanted to move forward and learn more? I mean that's a lot to be uncovering in such a short amount of time. It did feel like the velocity of it was really um staggering. But no, I never had a moment of thinking, I don't want to know because again if you believe yourself to be, you know, if you think you know where you come from and you discover that you didn't, that you spent your life kind of laboring under um sort of the most massive kind of misconception and even things like, I mean medical history, it was it was with a shock that I realized, oh my God, I have been giving incorrect medical history all my life when you go to a doctor's office and they take your mother's history and your father's history. I was giving a history that was not mine genetically and that is dangerous.

I was also giving a history for my own child when I became a mother that was incorrect and that is dangerous. And so there was, you know, a feeling of, I want to know, I just, I wanted to know I was a little frightened. Um, I had no idea what I was going to discover or who I was going to discover or whether that discovery would result in a door slammed in my face or someone or did not, or more than a door slammed in my face. Just never being able to know many, many people who find themselves in the situation that I did are not able ever to put the pieces together. And I was able because of just a couple of clues and an educated guess. And the fact that my husband and I both Do research and reporting for a living.

I was able to arrive at my biological father in 36 hours. Yeah. I mean, it's remarkable when I hear other people's stories, I've never heard of it being quite that fast of a turnaround time in terms of finding that potential match. And then it's like, wow, that actually is the case. And I mean, you brought up a fantastic point from a health perspective of the family history you have been given was not correct. And like that can be really misleading of thinking you're not at high risk for certain conditions and saying, oh my family histories of this or thinking you're at high risk when you're not um for you and your son, you know, really important information. And then being able to get that real information for your paternal side. Um, so that you could update those records and see if there was anything else to be mindful of. And um, I mean if we kind of go back to when you did find the potential match, I mean what, how did you connect with your biological father at that point?

I mean how did you sit down and say, okay, what am I emailing him? What am I writing in this letter? Yeah, I think I had the instinct. Um, I mean I knew I knew I was right that this was that this was the person who was my biological father. Um his nephew matched as a first cousin um on ancestry dot com. And I knew that my parents had gone to an institute that was on the campus of the University of pennsylvania. And the educated guest part is that my husband and I both thought the donor was probably a medical student at the University of pennsylvania. And you know, using nothing more than facebook and an obituary um of um this first cousin on facebook's mother, she was survived by a brother. Therefore an uncle. If you're following me of my first cousin who graduated from University of pennsylvania medical school um in the years during which I was conceived.

And then there was the fact that when I looked him up, which was easy to do again, you know, some people are a little less visible on the internet than others, but he was pretty visible and he, he lectures, he's a retired doctor. And I was looking at the familiar, I was looking at my own gestures. I was, I was looking at something I had never seen before without knowing that I had never seen it. Um, so it was completely clear to me, even though I totally surreal, but it was clear to me that I was looking at my biological father and then my instinct was, this is going to be a shock for him. And in all likelihood, and what would it be like to be a 78 year old retired physician. And opening your email one morning and like amid the political entreaties and you know, golf club dues and you know, whatever have there be this bombshell.

And so I was very careful, I tried to put myself in his shoes, which is something that I do as as a writer, it's something that I've always done is try to really imagine the other, try to really imagine imagine the, what it might feel like to be this other person. And so I wrote him a really careful email. I, I told him what I had discovered. Um, I made it clear that I didn't want anything from him which and that I would respect his privacy, which is something. You know, when inheritance came out, I was on book tour, it came out in 20 in january of 2019. I was on book tour pretty much right up until the pandemic. Um speaking to many, many thousands of people all over the country. And I heard this story over and over again that when, you know, so many of these discoveries are being made because of DNA testing, right?

It's not just misattributed parenthood, it can be adopted is finding their birth parents. It can be people finding half siblings, they didn't know they had or men finding, you know, being found by Children that they never even knew about in any way. And the first feeling that everyone who's contacted seems to have is feeling threatened. What do you want? What do you want from me? You know, I don't have anything to give you. And it's it's human nature. And I think I just kind of intuited that that it's human nature of somebody like you think, you know, um You're 78 years old, you think you know how many Children you have, you think you know what the shape of your life is in his case, he had been married for over 50 years and his wife never knew that he had been a sperm donor as a medical student, not because he was keeping it a secret, he just didn't really think about it after he did it. And so I was aware of what, what a shock it might be for him.

And that's how I composed that initial email to him. I didn't want him, I didn't want to scare him. And for those that are interested, the actual letter is in the book too. So to be able to actually read what you send to him and see the emails back and forth is just really interesting to see how your relationship started and feeling each other out and seeing how this was going to work and the back and forth there. I mean, during those exchanges, were you also thinking maybe I have other half biological siblings out there? And like, you know, what's the chance that I'm the only offspring from him donating sperm? Yeah, yeah, I think that that's what he was most worried about. I think, you know, it's one thing for one biological child to come knocking on your door. If you were a sperm donor many years before, Um, maybe that could even be a nice thing. But what if there are 37 biological, you know, offspring knocking on your door, this happens and it happens all the time.

And and that could really upend a life and be um super complicated. And that is in fact more common than not. I have. I just, you know, just parenthetically here, I have not discovered. Now I haven't looked, but no other biological half siblings have turned up or contacted me and that makes me pretty unusual in this situation. It's much more common for people to make this discovery and discover that they do have a dozen or two dozen or more or many more half siblings, which is its own kind of destabilizing thing. But I wasn't thinking about it that much in the moment other than um the ethics of that and how and how he would feel about it because I think that that was what he was nervous about.

Yes, certainly. I mean when he hadn't been thinking about this for many, many, many years of, as you said, he kind of wasn't Thinking that donating sperm back then became anything um for those that recently over the holidays were gifted one of these direct consumer tests like 23, I mean like ancestry, what advice do you have for them in terms of, you know, as they're thinking about whether they want to do it or not. Um you know, of going through the journey that you have, do you have any particular, you know, tips for them or insight as to what they should think about and consider before they're spitting into their kids. Well, it's interesting, I mean, I think my, my, my book has woken up a lot of people at as have other stories that have come out and you know, been in the media about the possibility that there may be a bigger surprise than uh you know kelly ripa discovering that she was in eighth italian or you know the guy with the leader Hoesen on the you know on the ancestry dot com ad.

There maybe a maybe a bigger surprise than you know the fun fact um that most people are um are taking these tests to discover or you know to kind of fill in their family tree. Um I think the statistic is that it's somewhere around 7% of people who do these tests discover some kind of um non parental event or you know not parent expected. That's a lot a lot of people when you think of the many millions of people who take these tests so you know look I am an object lesson in this. I'm someone who took the test and completely forgot about it. That's how unimportant it was to me, I wasn't waiting for my results to come back. I was totally could not have been more casual and it um was a life altering discovery for me I will say and I guess in terms of you know people often ask me, you know, are you sorry you found out?

I am so grateful that I found out because I do think that anyone who makes a discovery like this where there has been something that's really been kept from them all their lives has a feeling beneath the shock of on some level Oh that makes sense. And that really happened for me. And you know, I I had spent my life feeling somehow like I didn't quite fit in. Like I didn't quite fit into my family. Like there was something different about me that I was other. Um I was often told that I didn't look quote unquote jewish, that I didn't look like the rest of my family because I didn't and that was always confusing to me and always made me feel a little bit. I mean such a politically incorrect thing to say to anybody, but people do say things like that and they certainly did.

Um and and so it was enormously liberating to actually discover the truth of myself. I'm very glad I know and I think that people who make these discoveries even when they are agonizing initially also feel grateful to know because it solves a mystery that on some level we walk around with, because secrets don't just disappear. They sleep in corners. You know, they they they lurk in shadows. Um but they're always there and they shape us. So um I just think people who do these tests need to know that that is a possibility. And I wish that the director consumer testing companies were willing to be more transparent about that and included in their marketing and advertising in some way.

Uh not just hired people to be counselors when people call, as you know, as we did saying wait, there's been a mistake. This can't be right. I mean they do have people, you know, they have they have people handling phone calls like that, but they'd like to stay on the side of isn't this just good fun? Yeah, I think that's a good point to make and something that I do hope that you know, when you open up that kit and you're about to spit into it, there's a warning label label or something like that that says, you know, just so you know, you could find out things like endless things like non parents expected events and um go through like you could find out you have other biological relatives, you didn't know about different countries. You're from just so many different aspects that can come out of this that are surprises. So, you know, I just wanted to thank you so much for coming on the show and sharing your journey with us and being able to peer inside the book. Really appreciate you coming on. It's just fantastic to have you on and another Connecticut person.

So um it's really, really been great. Thank you so much. I really enjoyed it. Thank you to win your own copy of inheritance head over to our twitter instagram, Youtube facebook, all the social media and you can enter into the book giveaway. Just search DNA today on those platforms and part of the instructions is going to be to follow Danny Shapiro on instagram, which is at Danny writer, Go check out her podcast too. It's called Family Secrets. This is a collection of stories from Guests who have also discovered long hidden secrets from their family's past and it's also being adapted into a show. So definitely cool. And check out right now, if you found the topics of this episode interesting, you're going to love our two series from 2020. This explored infertility and direct consumer genetic testing, so you can check out those episodes. It was seven episodes each for those series. So a lot of topics and information to explore. And there another recommendation is to head over to Festival of genomics dot com. This is the UK's largest genomics event.

It is taking place in just a couple weeks on january 26 wrapping up on the 29th, you're going to see a lot of familiar names on there, People that have been guests on the show, people we've mentioned before on the show. It is a really long list of impressive presenters. So, head over to Festival of genomics dot com to learn more, and for 90% of people, it's actually free to register and attend. So, obviously online Festival of genomics dot com for all information on this show, including all the links we've mentioned. Head over to DNA podcast dot com. That way you don't have to remember everything we talked about. So all the information for this episode and all of our previous episodes, DNA podcast dot com and any questions, comments concerns brain blast you have from this episode, email in info at D N A podcast dot com. We'd love to connect with you and hear from you listeners. Last favorite ask, please review us on Apple or wherever you listen to this podcast. A lot of podcast players except submissions for rating and review so that you can let others know how much you enjoy the show and then other people can find us as well.

So please do that. And you know, we'd love to give you a shot on the show too. If you do that and you can email us with that. Thanks for listening and join us next time to learn discover new advances in the world of genetics.

#139 Dani Shapiro on her Donor Conceived Discovery
#139 Dani Shapiro on her Donor Conceived Discovery
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