How would you feel if a DNA test revealed you had over a hundred half-siblings?

In part two of Amber’s story, Corey and Kendall delve deeper into the world of donor conception and the complex emotions and legal battles that come with it. Amber shares her journey of discovering numerous half-siblings, the challenges of forming new relationships, and her ongoing advocacy for better regulations in the fertility industry. This episode sheds light on the urgent need for transparency and ethical practices in donor conception.

Key Benefits for Listeners:

1. Emotional Insight: Understand the emotional impact of discovering new family members through donor conception and how to navigate these complex relationships.
2. Advocacy and Awareness: Learn about the current legal landscape and the push for better regulations to protect donor-conceived individuals.
3. Practical Advice: Gain practical tips for anyone going through a similar journey of discovering donor-conceived siblings or considering donor conception.

Listen to Amber’s compelling story and join the conversation about the need for transparency and ethical practices in the fertility industry!

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Kendall and Corey: Oh my goodness. Wow. Wow. That's funny because... Obviously, he was very busy in college, but we've had another guest on who's going to be on again soon with his half sister and they know, I think they're up to 73, 74 that they know about. And they think that might just be half because I guess the, the donor was told halfway through his, you know, um, donations here's how many you've got successful, you know, and it was like around 70 and that was only through his donor time. So, I just, I don't

Amber: Yeah. So basically, and this is fascinating to me, so he was at Albany Medical College and he said literally like the first week of school, they went around to all the dorms and they said, if you want to get in good with the professors and you want to support the college, you will go donate at the clinic. And they gave them a form to fill out and they got a physical. And then once you pass the physical and the paperwork stage, then you were in, and it was 25 bucks a pop. And my bio dad is very tall, very fit, blonde hair, blue eyes. And he's like, Oh, I thought I was popular because there were a lot of Jewish families in the Albany area. And I was like, Nope, my dude, you were like six, three with blonde and eyes. That's why you were popular. According to my parents, they didn't even pick. It wasn't like, you now where you go through like a catalog, they just look, I mean, my, my dad that I was raised with is a pretty tall guy with curly blonde hair and light eyes. When I first found Kurt, my adopted sister, who I grew up with, she was like, Oh, he looks like he could be dad's cousin. They look similar enough that clearly did a good job of trying to make it match. But yeah, he said he was the most popular donor in the program, and he donated probably over 500 times over three years.

Kendall and Corey: Wow. Okay. Wow. Yeah. Did he get any good with the professors after that? Yeah.

Amber: Well, he went on to be a doctor.

Kendall and Corey: It's

Amber: you know, he at least made it through med school.

Kendall and Corey: amazing. So how many of your half siblings have you formed a relationship with?

Amber: So I have met, so Caitlin and I are super close. We talk all the time. And I think we just, you know, we really had that relationship that was like forged through not only her supporting me through my discovery, but then we also like found our biological dad together. And then as other siblings came in, we were kind of the ones like handing off the information. So, we became very close and then,we, before we had kids, we would like go on vacations together and stuff and kind of try to make up for lost time. She's come out to visit me and our kids have met. And so it's kind of nice that we have that, but I think she and I will always be close by virtue of like having just a ton in common, but also having these experiences that we went through together. And then I've met Karen and Josh, Jeremy's brother, yeah, I think that's it. Everybody else is kind of too, geographically spread apart, but I would like to have everyone meet up sometime. I do think that would be fun. But we have a group chat that we all... Oh, and Tom. Sorry, I forgot about Tom. So Tom, Tom grew up down the street from me and was best friends with my cousin.

Kendall and Corey: my goodness. Huh. Wow. Crazy.

Amber: Um... To the point that there was kind of a funny misunderstanding where he was not telling people because he also found out through 23andMe. And that's been interesting. Half of our sibling group knew and the other half found out. He did not know. He found out through 23andMe. He matched with me and Caitlin and Caitlin gave him the rundown. And then he joined our little group and like, he and I, he added me on Facebook. My cousin sees that we're connected on Facebook and my cousin's like what's going on here? like how do you guys know each other and he was getting kind of defensive about it. He was like, how do you know my cousin?

Kendall and Corey: hmm. Mm

Amber: And he was like, that's your cousin. And he was like, yeah, he's like, Oh, that's my half sister. And my cousin didn't know about my status either. And was just like, what? And kind of freaked out. And I yeah, actually we're not related. Sorry. Um,

Kendall and Corey: Wow.

Amber: Yeah, his mind was blown. And to me, that's part of why I feel so strongly about advocacy and regulations because there is like, no, you know, I'm very lucky that I didn't date my brother, but like, there's a world where like, we're the same age, we like grew up in the same place with the same people. And these things happen and it's really creepy to think about. All of my half siblings were all conceived in Albany, born around the same area. Some of them left the area, but you know, even like my half sister and I have tons of friends in common, grew up 20 miles from each other. So yeah, and so I've met, I've met Tom, Um, he's, he's local. Um, yeah, so I guess I've met four, four now. And for a while it was easy because I lived in New York City and a lot of people would like come through New York City and... I would get to meet them, but, um, yeah, and we've, we've now created a welcome packet. Did Jeremy tell you about the welcome packet?

Kendall and Corey: A little. Yeah. A little bit. Yeah. But you could tell us more.

Amber: I'm the creator of the welcome packet because I'm a type A nut job. We realized it was not sustainable. We've kind of slowed down, but I'm sure there'll be more eventually. And people have a lot of questions. And so we put basically, and also for like, posterity's sake, because, you know, I can't remember what I had for breakfast yesterday. We put everything that we know about Kurt and about his family, then about all of us, we each have like a page with like a photo and like an intro. So all of the information we have is now in essentially a PowerPoint. And when you pop up on 23andMe or Ancestry or whatever, you get invited to the group chat and you get the PowerPoint. And whatever you choose to do from there is your choice but at least we can say like, here's all the information and that way we don't have to like retell the whole thing.

Kendall and Corey: Right.

Amber: And, you know, spend the emotional labor of explaining So, yeah, that's our new efficiency hack.

Kendall and Corey: Yeah. Well, has Kurt sort of embraced that, this idea that A, you all are welcoming to new half siblings and that he could eventually become involved with many of them, or?

Amber: It's interesting. He's only met me and Caitlin and then he met Trevin because Trevin lives in California and like drove up, was like, I will come to Sacramento, like I want to meet you. But we have this kind of weird dynamic where he kind of wants me to like vet people for him a little bit like he

Kendall and Corey: Don't send me any weirdos.

Amber: Yeah, Like, so I'll go to him and be like, Hey, this person emailed you, you didn't email them back. you meet with them? He'll be like, Oh yeah, sorry. I'm bad at email. what's the deal with this person? And I'm just like, I don't love being the go between, so usually I'll just give people his email, but then he's like, you know, retired and not checking his email all the time. So then I have to be like, Hey, can I give this person your number? But yeah, I think he feels very strongly that we have a relationship and that's he's never said this, but I feel like he's like, that's all the capacity I have, I have one. So that feels kind of weird. Yeah, there's no like playbook of like, how do you manage these relationships? How do you choose who to invest your like finite time and energy with? Andit's just gonna expand, right? We're only going up from here. But he was very tickled by the welcome packet. He was this like is great!

Kendall and Corey: It has to be daunting because at the time that he was making all these donations, you know, there was never the thought that anybody could surface, much less hundreds, potentially hundreds of, I can't imagine what goes through your mind when you finally figure that out. Right. Oh, wow. This could just, be exponential.

Amber: I had dinner with him recently. He was in town for his, like, 35th class reunion, which is funny because I was like, Oh, what year reunion is that he's like, well, how old are you? Well, that, that makes sense.

Kendall and Corey: There you go.

Amber: I had dinner with him and his wife and he was like, you know, all my friends said I did it, right, I managed to like have these great adult kids that I get to like hang out with, but I didn't have to raise them. And so he's like, I feel like I cracked the code where I get to swoop in and have all the benefits and none of the actual risk and responsibility. I was like, yeah, like, great. Cool. Like,

Kendall and Corey: exactly. Thanks for my existence,

Amber: yeah, basically

Kendall and Corey: What have things been like with your immediate family, your mom and dad and your sister?

Amber: It's we're at a good point with it. So initially, you know, my mom was like, don't tell anyone. Don't tell anyone. You can't tell, you have to keep this secret too. And I was like, that's kind of bullshit. Like, this is my life. This is my story. This is happening to me. These were your choices, but it's happening to me. Um, and so of course, you know, I went and made a documentary and a podcast about

Kendall and Corey: right. You

Amber: my experience.

Kendall and Corey: sound like I feel. Yeah. Yeah. Mm

Amber: and I mean, my thing is, I've just always been somebody that this is the way I process things as I started with, you know, after this happened, and while we were still looking for my bio dad, I was just trying to learn more about the industry and joining support groups and trying to understand like how this happened. And the more I found out, the more I kind of like pulled on the thread, I was more like, how is this legal? Like, how is this allowed learning more about people who, you know, like I said, I'm very lucky I had a very straightforward situation where I had my discovery, I found my donor, he was cool. He doesn't have any kind of crazy illnesses or, you know, really scary medical history, but for most people, that's not the case. And I've met so many people who have everything from, Ehlers-Danlos with like severe comorbidities to a woman who legit has something where the non medical term is exploding heart disease that she inherited from her donor.

Kendall and Corey: Hmm.

Kendall and Corey: wow.

Amber: If you had an apple Watch subscribed to Apple News, like, got a notification with my face that was like, this woman has like, over a hundred half siblings, as my phone was blowing up, like, everybody was like, oh my god, you're on my Apple Watch. Um, but this was all happening during COVID so it kind of felt very surreal, you know, documentary, the documentary was, uh, a kind of smaller splash, but it was like a red carpet, and there was a party, and there was a thing, where it was like, you know, we kind of put this out into the world, and then I sat in my office and did all these interviews,

Kendall and Corey: Yep.

Amber: But it's been really cool to, you know, one, I'm still in a class action lawsuit against the FDA, and we can talk more about that, but to also see the ASRM slowly making changes and two, you know, people reach out to me all the time and say, I used your documentary to come out to my family as donor conceived. I used your documentary to explain to my parents why I'm so hurt by them not being honest with me or, like you said, I see myself in this podcast, I'm hearing my story represented. And so to me both of these projects were a labor of love, I didn't make a single cent off of either of them, but, I think it's important to have our stories out there. And I do know people who, because of my story, have made different choices about their fertility journey, uh. And so, I think that, you know, the more people hear our stories, the more people might realize, like, Hey, just because we could do this and we did do this for decades, maybe this isn't the best way to do this for the end human beings we are creating.

Kendall and Corey: Right. And you would think that, I don't know, I think that the argument should be more salient now because people are just finding things much more easily than we could have 20 years ago. So I feel like it just feels even that much more unfair to the children, you know, who are not being told the truth, you know?

Amber: Yeah. To circle back on your question about my family, so I made the documentary when I was pregnant with my oldest son, and then I named him after my dad, and that I think was, it was something I wanted to do, but it was also symbolic, like, I wanted him to know, like, nothing, I mean, I told him repeatedly, like, nothing is changing, nothing is changing, and I think that was a huge step towards his, healing in this because he also, you know, this was a surprise for him, too, this was a healing journey for him, too., And I feel like I have a lot more resources to deal with that than he did. And then, my mom, I think, was still resentful, and then we had two summers ago this huge blowout fight because we were at a wedding and, I was talking to the father of the bride and I was saying, oh, your daughter is such a wonderful young woman, do you have parenting advice? And he said, you know, we always treated our kids like people and we were always honest with them, no matter what, even when it was hard. We were always honest with them and my mom standing right next to me goes, absolutely a hundred percent. We did the same thing.

Kendall and Corey: oh, mom.

Amber: And I turned her under my breath and I said, you know, that's not true.

Kendall and Corey: Right.

Amber: And she said, it is true. You never asked. I never lied to you. You never asked.

Kendall and Corey: Wow.

Amber: And I got up and left. I was like, I can't, I can't, I can't. And I left and she came and found me and she was like, what's wrong? Is something wrong? And I was like, yeah, I was like, it's super invalidating for you to say in front of my face that you never lied to me. And then she just like lost it. She was like, if I'm a monster, all these people are monsters. I just did what the doctor told me to. You can't be mad at me forever. And I was like, I'm not mad at you, but I'm just saying like acknowledge my lived experience that I was lied to. So then I was like, you know what? I can't have this conversation with you, I'm sorry. You're being too emotional, and like, I'm gonna say something not nice, so I'm leaving. So I left, and uh, she texted me a couple days later, and was like, you know what? You were right. I'm really sorry. And it was this like, long, very thoughtful apology, which I was not expecting. That is not her style. And she was like, you were right. I lied to you. I lied to you for my own benefit, and I benefited from lying to you, and that hurt you, and I'm sorry. And it was just like a switch flipped. Again, this was two years ago, so this was like, I don't know, like five years into this, she finally got it that I wasn't just trying to be difficult. I wasn't just trying to make things hard for her. This had actually been hard for me.

Kendall and Corey: Right,

Amber: And, it was all, like, on the basis of this one lie, because that is something I still struggle with, is, like, what's real and what's not, you know, because if the biggest thing in your life, or one of the biggest things in your life is a lie, like, what else is a lie, you know?

Kendall and Corey: No, and I think you made the point when you said that, you know, nothing changed about the way that you feel about the man who raised you. And probably it never would have, if you've been told when you were three, that's still your dad. He's still the person that took care of you and loved you and, you know, I wish parents could see that, could realize that those relationships aren't gonna change.

Amber: right.

Kendall and Corey: Yeah,

Amber: and I mean, you see this a lot, like there's plenty of adoptive parents, step parents that raise their kid and the kid understands in full transparency that this person is not a relative and yet it's so funny to me when I see these recipient parents online who are like, well, blood doesn't matter. It's just love that matters. And it's like, great, exactly. So tell your kids.

Kendall and Corey: Yeah. Right. Yeah. Exactly. Yeah.

Amber: If you really feel that way, then just be honest. And I think things have shifted dramatically for the good. Most doctors and clinics are telling people, you know, tell your kids so early that it's not even a memory. Make this part of their understanding of who they are. But you still then see, like, you know, there was a clinic just down the street from my house when I lived in New York City that was touting new facial recognition software that would best match you to a donor.

Kendall and Corey: Hmm.

Amber: it's like. Well, that's kind of weird. And then, still, we get new folks every week in the support group who are finding out through 23andMe. So there's still people out there clinging to these lies when there's so many stories out there now, like mine and others where people are saying, tell the truth. Just, you know, give your kids the courtesy of their real identity.

Kendall and Corey: It seems like the industry is giving people tools, giving them reasons to lie. Mm-hmm.

Amber: Exactly.

Kendall and Corey: So what's the goal of the lawsuit against the FDA?

Amber: So, Nick Isel is kind of the person behind this and Nick has a very interesting story. He was the subject of a documentary called The Genius Factory, which was based on a series of Slate articles. Nick was conceived at a clinic that was basically openly doing eugenics. They were claiming that all of their donors were Mensa members, but they weren't actually validating that. So Nick's actual biological father was a very unstable person with severe mental health issues and a mile long rap sheet.

Kendall and Corey: Mm. Whoa.

Amber: Despite his mom being told he was a physicist and a Mensa member and, you know, all this stuff that wasn't true. And Nick was diagnosed with some mental health issues that he inherited from his donor, was able to treat them, but as he started looking for his half siblings and finding them, he was finding that they had taken their lives because they had these mental health issues they didn't know about, and were struggling and their family didn't know how to support them because they weren't given the full medical history. So he kind of made it his mission in life to get the FDA to be accountable to transmittable disease and conditions through sperm and egg donors. The first step in that process is he petitioned the FDA and he got over 500 signatures on this petition and comments saying, the purpose of the FDA is to keep patients safe through treatment, and we have all of this evidence that there are people inheriting conditions from donors because the donors aren't being screened properly and the FDA should be accountable to those screening failures and remedy them. The FDA denied the petition and they said the recipient parent is the patient. The child conceived through donor conception is not, therefore the FDA holds no responsibility for the outcome of that pregnancy, um, they only are responsible for the patient. Which is why the only changes, the only restrictions in the United States there have ever been to donor conception was in the 80s during the HIV crisis, because there were women contracting HIV from their donors. That is the only time the industry has ever been regulated. They also just like lie to patients. They tell them they're doing screening, they're not. As genetic screening is becoming more readily available, some clinics are changing their tune, but, they're just not doing the kind of screening they're saying they are. In the documentary, I interviewed a friend of mine who's an egg donor who has rampant mental health history in her family and she lied about it and they didn't dig into it at all because she needed the money.

Kendall and Corey: hmm.

Amber: And so it's creating these conditions where there's people who are desperate for cash and there's people who are desperate for children and the industry connects them, sometimes not with the best results. So now we're suing the FDA, for accountability and for responsibility to create guardrails around the fertility industry. And the thing is, it's not so crazy. These guardrails exist in every other country except for the United States. In Japan, there's a limit on the number of families that one donor can contribute to. In Canada and the UK, it's illegal to pay someone for a sperm and egg donation. There's smart guardrails that already exist in other countries and then there's other countries who have just fully outlawed anonymous donation. These things already exist, they're already in practice, but the ASRM, you know, donor conception is their cash cow, and the fertility industry is afraid to do anything to jeopardize that flow of money.

Kendall and Corey: Yep. Mhm. Yep. And what a horrible way to prey on people who do feel desperate, right? You know, exactly. On either side of that equation. It's just awful.

Amber: Yeah, and I get it. I mean, I have lots of friends who have experienced infertility or are queer couples that want to have children. I feel very strongly that anyone should be able to have a family in the way that they want to. But our thing is like, can we put some guardrails in place to protect these kids and connect them to their biological family? And that's always been the thing I'll never understand about donor conception is, people are using a donor because they still want the child to be partly theirs.

Kendall and Corey: Mhm.

Amber: But then they could say, well, blood doesn't matter. Their genetic relatives don't matter. None of this stuff. And it's like, well, but you still want it to be yours, like that part matters.

Kendall and Corey: Yeah,

Amber: not the other stuff.

Kendall and Corey: right, right.

Amber: make it make sense.

Kendall and Corey: yeah, Yeah. Otherwise, why didn't you just adopt a random child, just

Amber: I had a friend who, her and her wife wanted to have a baby really badly, and they went through a very expensive process, like IVF process and retrievals, and then they went with an anonymous donor, and I was like, well, did you have a choice? And they were like, yeah, but it was $5,000 more to have a known donor. And I was like, you spent $150, 000 on this baby and you didn't want to spend the extra $,5,000 to know who their father is like,

Kendall and Corey: Yeah, no, I'm with you. That doesn't make sense to me, but

Amber: but the industry is setting people up for this. Right. It's wild. And these kids are going to have questions and hopefully everything's fine and hopefully their kid is cool with it. And hopefully their medical history is fine, but I just can't imagine investing so much in having a child and then be like, Oh, but we don't, we don't need to know

Kendall and Corey: right

Amber: either.

Kendall and Corey: Yeah, with the risk that, in 10 years, the child needs to know about these health concerns, these mental health concerns, it's just, yeah, it just seems, again, sort of, well, it is unfair to the child. Yeah, sad. Yeah. Wow. Well. Amber, it's wonderful that you are getting into the fight and fighting for change. As you've mentioned, you've got a happy ending, kind of fairytale story and not everybody has that. But, it also takes a lot of courage to share your journey, so we really appreciate you doing that.

Amber: Oh, thank you. I think a lot of this stuff that is happening on the donor conceived advocacy side, we're modeling after the adoption advocacy side, right? Because there's still a lot to be done there, but there's been clear wins in terms of access to your correct birth records and access to records and more restrictions around how children are moved around. And so we've really looked to those models to kind of mirror what we've done. And there are some states that have passed legislation around accurate records for donor conceived people, around open ID donation. So we're making progress. We we've gotten a couple of states at least to make it illegal for a doctor to use their own sperm without telling a patient. So at least there's that.

Kendall and Corey: at at least there's, I mean, well, I mean, right. Baby steps, but still so important. Literally steps, but yeah. It's silly that we even need to bring that up. Right. But it's It's real. Yeah. Yeah. It's still a real fear. Well, we definitely want to stay up to date as how things are moving along with the lawsuit. So if you don't mind us reaching out down the line just to see how things are going, that would be great.

Amber: Yeah, of course. I mean, you guys should definitely have Nick on the podcast. He's just a super articulate and fascinating person who has been in this whole game much longer than I have and has really just kind of dedicated his whole life to this. So he, he has his own, you know, really fascinating story to tell.

Kendall and Corey: Yeah, that's great. Well, thank you so much for sharing your journey with us.

Amber: Of course, thanks so much for having me. I really appreciate it.

Kendall and Corey: Yeah, we'll stay in touch and, in fact, if you can help connect us to Nick, that would be fantastic. Just, you know, he probably gets.