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In 'Biohacked' podcast, at-home genetics tests rewrite family history

DANIELLE KURTZLEBEN, HOST:

With the growth in at-home consumer genetics tests like 23andMe, people have been discovering secrets in their genes, not matching the story they've been told from their family's history. In the podcast "BioHacked: Family Secrets," journalist T.J. Raphael details how an at-home genetics test rewrote the family history of her friend Amber Van Moessner.

(SOUNDBITE OF PODCAST, "BIOHACKED: FAMILY SECRETS")

AMBER VAN MOESSNER: I mean, were you going to tell me?

UNIDENTIFIED PERSON #2: When you get down to asking with the truth, we have to tell you the truth, just wish you never asked it.

MOESSNER: I just - I mean, I need to, like, process all of this.

KURTZLEBEN: That was from the podcast "BioHacked: Family Secrets." It chronicles Amber's story of family discovery and raises bigger questions about how the donor conception industry operates. And we have the team from "Biohacked" hacked on with us today. T.J. Raphael, Amber Van Moessner, welcome to ALL THINGS CONSIDERED.

TJ RAPHAEL: Hi. Thanks for having me.

MOESSNER: Thanks so much.

KURTZLEBEN: Amber, this podcast goes straight to your story of literal self-discovery. Let's just start with that story. Can you share with us what you learned after you took your 23andMe test and what it was like to find out these hidden secrets in your DNA?

MOESSNER: Yes. So when I took the 23andMe, the first thing that was surprising was my ethnicity did not match what I had been told it was my entire life. So that was pretty surprising. But I managed to overlook that red flag with some reassurance from my parents. And from there, about a year later, I connected with a biological half-sibling. She knew that she was donor conceived, and so she was excited to connect with me because she had been looking for half-siblings. And she was pretty surprised when she had to hold my hand and walk me through the realization that I was also donor conceived.

KURTZLEBEN: You then confronted your parents about all this, and what I found fascinating was that you taped the conversation you had with them after discovering that your results didn't match up with the story you thought you knew. And we're going to play a short clip here. Here it is.

(SOUNDBITE OF PODCAST, "BIOHACKED: FAMILY SECRETS")

MOESSNER: I wanted to talk to you guys about something now.

UNIDENTIFIED PERSON #1: OK. What's up?

MOESSNER: Mom, I told Dad, but there is a girl on 23andMe, that DNA test we did.

UNIDENTIFIED PERSON #2: OK.

MOESSNER: And genetically, she is my half-sister.

UNIDENTIFIED PERSON #1: OK.

MOESSNER: I'm just curious, like, how that makes sense.

KURTZLEBEN: Amber, do you feel like you've come to terms by now with this new story you have about yourself?

MOESSNER: It's something that I've had to accept and, you know, kind of make sense of. But at the same time, every time a new half-sibling pops up, it's hard not to feel that dystopian pull of this isn't normal. And, you know, it's hard not to feel like, you know, to feel like a freak when you have, you know, this very strange situation where there's really no clear social mores of how you should navigate it.

KURTZLEBEN: Right. And you met that first half-sibling. Her name was Caitlin (ph). Am I right on that?

MOESSNER: Yes.

KURTZLEBEN: How many half-siblings have you met since then or become aware of?

MOESSNER: So there's ten of us that we've found. To our knowledge, there's, you know, probably 10 times that amount out there.

KURTZLEBEN: Wow. Did meeting new ones get normal, as you put it? Did it ever start to feel more routine or is it just weird every time learning of a new one?

MOESSNER: I mean, it's definitely something that I'm used to now, but it's still surreal every time because, you know, these people are my half-siblings. It's someone that you did not grow up with. They're basically a stranger to you. And yet, almost always, there's some sense of familiarity. So every time you meet a new half-sibling and make that connection, you're kind of just like studying each other a little bit. And that always seems to be the reaction is just the kind of surreal, like, funhouse mirror of seeing, you know, half of your genetics in someone who's a stranger.

KURTZLEBEN: Absolutely. TJ, I want to turn to you because a story like this is shocking on an individual level, especially hearing it from a friend of yours like you did. But we also know that there are lots of stories about how these at-home tests have unearthed new family histories. So I want to ask you, how did the idea for sharing Amber's story become the jumping-off point for a podcast? What was the vision for what you wanted this story to do?

RAPHAEL: So when Amber first told me her story, being a nosy journalist myself, I said, hey, we should tell way more people about this. Can I record you? And she said, yes. And as I started to research the fertility industry and specifically assisted reproductive technology, I was shocked with what I found. One of the first conversations Amber and I had was about her telling me that her donor said she had roughly probably 75 to a hundred or more half-siblings out there. And I said, how is that possible? Only to find out that there's no legal limit on the number of children one donor can foster in the United States. I remember one time Amber said to me, I was just like you. I thought I knew who my parents were until one day I didn't. And that really struck a nerve in me. And the more I researched into the industry, the more I found that it's really the Wild West.

KURTZLEBEN: Amber, I want to come back to you. Having put this podcast together, looking back, at first, did you have any hesitation or did your family about putting your story out there? And now, do you feel like your story is making a difference?

MOESSNER: Yeah. I mean, when I initially discovered this, my mom absolutely did not want me to talk to anyone about this. You know, there's a lot of shame in this, you know, there's an entire generation that was, you know, told by a doctor, never tell anyone. And I think that, you know, they just didn't want people to know about it or think about it or talk about it. But the more I learned about the industry, the more frustrated and angry I got at how reckless and irresponsible this, you know, this - the medical industry has been in the creation of human beings.

KURTZLEBEN: That was T.J. Raphael and Amber Van Moessner, the team behind the new podcast "BioHacked: Family Secrets." It's from Sony Music Entertainment's Global Podcast Division and Three Uncanny Four Productions. TJ, Amber, thank you so much for joining us.

RAPHAEL: Thank you.

MOESSNER: Thank you. Transcript provided by NPR, Copyright NPR.