“So did my dad die or what?” And I went, oh my god, I guess we’re having this conversation now.
Eloise Drane
Hey there, welcome back to fertility cafe. I’m your host Eloise Drane. Welcome to Episode 66 of fertility cafe. In this episode, we’ll be talking about something that no one in the fertility industry foresaw coming when they began using IVF back in 1978, the disappearing anonymity in egg and sperm donation. While laws vary widely from country to country, the US is notable for how little it regulates it’s fertility industry, and the donor conceived community, the collective of people born in the US through egg or sperm donation wants change, some US states have begun taking steps to help provide information to the donor conceived community. In 2011, Washington State became the first state to establish a law that requires clinics to collect donors medical history, and to disclose that information to any resulting child.
Eloise Drane
In June of this year, Colorado became the first state to be an anonymous sperm and egg donation. Once the law takes into effect in 2025. Donor conceived adults will have the legal right to request information about their donors identity and medical history, as well as the right to learn non identifying medical information before that. And in December 2021, New York proposed a bill that would legally require reproductive tissue banks in the state to verify the medical history of all donors from the past five years. So on with me today, we have a special guest, Wendy Kramer, the co founder and director of the Donor Sibling Registry. Wendy will share her thoughts and her perspective on all of the things regarding anonymity in egg and sperm donation.
Eloise Drane
All right, well, Wendy, welcome. And thank you so much for being here. First, let’s start with your story. What has been your first hand experience with third party reproduction?
Wendy Kramer
I was married in the late 1980s, my ex husband had infertility issues. So in 1989, we used a sperm donor to conceive my son Ryan, who was born in May of 1990. The next year, my ex husband and I split up, he was completely out of the picture. And it was from that point on, that I raised Ryan as an only parent. So not quite a single mother by choice, but sort of after the fact single mother by choice, just the way things happen. So then I was raising Ryan by myself, and he was two years old in preschool. He saw moms and dads picking up their kids, and he came home from preschool one day and said to me, so did my dad die, or what? And I went, Oh, my God, I guess we’re having this conversation now. And we proceeded to have that cornerstone, very important conversation about the sperm and the egg. And you know, how he was conceived. Of course, he was only two and a half years old. So it was very simple. It was about a 40 second conversation. And then he asked me a question about Choo, choo trains and, and we moved on.
Wendy Kramer
And finally, in 2000, there were these things called Yahoo groups. So we started a little yahoo group thinking, well, maybe he’s not the only curious donor can save person. And here we are 22 years later, you know, a couple of years after that. We built a website, we became a nonprofit. And boom, boom, boom, we started getting media attention. We were on 60 minutes, and Oprah and everything you can imagine. And I think up until that point, donor conceived people and their parents and donors didn’t know that they have the right to be curious, the right to search for, and the right to connect and define these donor family relationships themselves.
Wendy Kramer
But again, it was a very important conversation, because then it was the cornerstone, it was the conversation that we then could build upon as he got older, and ask questions. And then it became just, you know, something that we talked about, he had a biological father, he may get to know him someday, but he may not. We didn’t know that. And I had a very curious kid. So by the time Ryan was six, he was looking at me saying, I want to know who my biological father is. And I’m thinking, Oh, my God, what have I done? What do I do? There was no counseling for me and my ex husband, there was no internet at that point. So I couldn’t even educate myself. There was one book out by Annette Baran called Lethal secrets. And it talked about the importance of honesty. And that’s kind of where I came from, was I was always going to be honest with him. And part of that honesty, you know, it’s not just about telling. A lot of parents think, Oh, I told my child good, we’re done. It’s also about acknowledging and honoring any curiosities that that child has about one half of their ancestry, their medical background and their close genetic relatives. You know, at that point, there really wasn’t very much information that we had and we had to basically wait for social media to be invented.
Eloise Drane
So let’s step back for a second because I have all these questions now running through my head. So when you decided that you wanted to work with a sperm donor, did you and your husband at the time, did you guys have the conversation? Like how am I going to tell my child or do we even plan on having that conversation with our child at the time?
Wendy Kramer
We never even talked about it. I mean, it’s insane. Given what I do, people say, well, didn’t you think your child would be curious? Yeah. And my honest answer was, I was like, so many parents, who are in that place of desperation. Just give me the baby. I’ll worry about everything else later. And I think so many parents are in that place of just give me the baby. And everything else will work out later. And I was one of those parents. And so when my two year old came home and said, you know, did my dad die, or what? I was like, Oh, my God, like no one counseled or educated me like, I had no idea. And I know, it sounds kind of ignorant. Like, why didn’t I think about that? But I really didn’t?
Eloise Drane
Well, I don’t think though, that it’s ignorance at all. I think it is where, like you said, you just wanted to have a child. And you probably had gone through issues with other fertility things that you guys were trying to figure out and trying to get pregnant, and you’re not, it’s not happening. And you’re just looking at the end goal. I mean, even as an egg donor myself, you know, when you decide you want to be an egg donor, you’re not thinking long term of what is this going to really mean 15, 20, 30 years from now, you’re just thinking about the here and now.
Eloise Drane
Yeah, but your fertility clinic and the doctor who did that, in my mind, has a moral obligation to properly educate you about what you’re about to do. When you sell your eggs. It is not just about a one day’s transaction, you know, being paid for selling your eggs. This is a lifelong consequence, action that you’re doing. That’s right. And that’s true for egg donors, certainly, but more so for sperm donors because they can end up with 200 kids. So they should be properly counseled and educated at the front door, which still to this day is not done.
Eloise Drane
Yeah. And I know that, I mean, now granted, when I did my first egg donation, this was 2000. So things are drastically different now than they were then. I see you shaking your head. But I can tell you, obviously, I run a surrogacy and egg donation agency. And for me, I can speak for our agency, oh, it is very drastically different. Before a donor can even begin the process with us she has to complete an interview. And she has to explain to us what her thoughts are going to be 30 years from now as to what she thinks she’s going to feel when someone is knocking on her door and saying, You’re my egg donor. And I now have this medical problem. And, you know, you’re the only one who can give me the tissue to be able to save my life. I mean, I know those are so extreme things, but you never know what could potentially happen. So
Wendy Kramer
Well, that’s great that your facility does that. But that is not representative of the entire egg donation industry.
Eloise Drane
Oh no. Yes, that is truly 100% correct. Yes, I definitely agree. So well, let’s talk about the donor sibling registry. And I know you said you had had it on Yahoo. And then you know, it kind of just went off from there. But can you talk specifically about the registry and what it is and and how it actually helps the masses.
Wendy Kramer
So the donor sibling registry, so what we do is we connect, educate and support all those in the donor family. So with donor conceived people, prospective parents, parents, egg donors, sperm donors, and their families, so donors wives, donors husbands, donors kids. So everyone in kind of the donor family. And so connecting, that’s the first thing we do is we have now I think, just about 83,000 members in, I think 130 countries around the world. And we help connect people with either their own or their child’s half siblings. We also connect biological parents, the donors with the kids that they’ve helped to create. And we now have connected almost 23,000 people in that way. So that is our main objective is to connect people who, through mutual consent context, so we’re not outing anybody, you will only come to the DSR, if you want to make contact. And that contact can be anything from just sharing medical information, which, like you say, can be crucial and can save lives and we have saved lives all the way through to, I mean, I know some egg donors and families who connect right from pregnancy or birth on the DSR. And they’re, you know, meeting at Starbucks the next day.
Wendy Kramer
So, you know, we’ve seen how this expanding family can be beneficial to so many people. And long before the age of 18, the age of 18 is only something set up by the clinics and the facilities to protect their own best interest but it is not. There is no evidence that waiting 18 years, keeping a donor conceived person from their close genetic relatives for 18 years is not in their best interest. Like think about it, in no society anywhere throughout time, have we deemed keeping up a human being from their close genetic relatives for 18 years is the right thing to do. Only in donor conception, you know, and in some cases of adoption, but it is to us, it’s absurd. Because we’ve seen now for 22 years, what these connections mean, when half siblings can grow up together. When donors and kids can know each other for much earlier than 18 years, there’s no need to wait. So that’s the connecting part.
Wendy Kramer
Then the educating part. We conduct and publish a ton of research on all the stakeholders. And that’s peer reviewed, research and academic journals. We have, I think more than 30 papers so far. We are presenting our newest research on egg donors at this year’s American Society of Reproductive Medicine meeting. And we just had a paper published last week on donor conceived people. So we are just regularly conducting and churning out papers and speaking around the world.
Wendy Kramer
Then the support part is we support our members. And that is done through a group chat on Facebook. We have a donor sibling registry group, that’s only for people in the donor family, nobody outside. It’s a private group. And then also, you know, I’m talking to people all day long. I do consulting sessions, and basically I’m helping people all day long. So a lot of support for our members, anyone who needs support, get support from us, or, you know, from the other members. I also, I have four books that I put out to help educate people on donor family issues, especially prospective parents as they’re walking into this. And then our website has literally days and days of reading materials for people who want to educate themselves.
Wendy Kramer
Yeah, that’s amazing. So let’s talk about anonymity, and if it really exists anymore, so with the emergence of ancestry.com, founded in 1996, the donor sibling registry in 2000, and then 23&Me in 2006, it seems like it would be nearly impossible to be an anonymous donor for long nowadays. What do you think of that? Is it important to have or get rid of anonymity in this industry?
Wendy Kramer
Okay, so anonymity ended, officially in 2005, when the very first donor conceived person and this is long before Ancestry, long before 23&Me, back then there was only Family Tree DNA. And in 2005, the very first donor conceived person figured out who their donor was through that commercial DNA test. We’ve been waving our arms about this for 17 years. Still the industry it’s like they don’t want to hear it. They don’t want to acknowledge it. But it’s not like new information. It is anonymity is no longer possible. But we still have, every single vial of sperm is sold as anonymous being anonymous for 18 years, or anonymous forever. Every single egg is sold as anonymous, which is absolutely stunning to me after 17 years?
Eloise Drane
Well, I wouldn’t say every egg is sold as anonymous, it depends on where you get those eggs from. I can’t really speak on the sperm side, because I don’t really, I’m not involved in the sperm donation, so I can’t really speak there. But on the egg donor side, it depends. It depends on the fertility clinic, it depends on the bank, it depends on the agency. I mean, we push very hard to have the intended parents and the donor actually meet and speak and have video consultations and be able to actually acknowledge each other and know like, we are doing something that is going to connect us for the rest of our lives.
Wendy Kramer
And so they share their names and contact information and everything.
Eloise Drane
We facilitate those meetings. And then of course, they have a contract amongst each other. And in that contract, it also states that they can be open enough to share each other’s information, and that their child, at the end should be able to if they choose to be able to contact this person and be able to have you know, whatever they decide as far as a relationship is concerned,
Wendy Kramer
That’s great. And that is yes, the egg industry and the sperm industry are very different. Every single vial of sperm is sold as anonymous. In the egg industry, and this is kind of like the the Shining Light through all of this anonymity BS. We’ve got now about two or three dozen egg clinics and egg agencies that actually write the donor sibling registry into their parent donor agreements, so that the parents and the donors join the DSR and connect right from pregnancy or birth. And that way, both of them are empowered to be in charge of the depth and the breadth and the speed of their own relationship instead of having a clinic or an agency standing in the middle going, we know what’s best for you and your family. No, the parent and the donor know what’s best for their family. Give them access to each other and let them you know, they’re capable human beings, they can figure it out themselves. So that is the one bright light. But I should note, not one single sperm bank will do that.
Eloise Drane
Yeah, like I said, I don’t get into the sperm side. But I do think that that is actually a disservice to our industry for sure. So I’m curious, what impact do you think that diminishing anonymity factor will have on the industry? Like, do you anticipate we’ll have fewer donors willing to participate?
Wendy Kramer
Well, that’s been the industry’s argument all along for not ending anonymity. But what happened is, anonymity ended, despite them, you know, it’s like, it’s not like they decided when anonymity would end, anonymity ended 17 years ago. So any donor who has the internet can see that there is no anonymity, people are being found all the time. The stories are everywhere. So I guess you’d have to ask the egg clinics and the sperm banks. Have you had a decrease in donors? You know, I don’t know. I tend to think probably not because people are very motivated financially to sell their sperm and sell their eggs.
Eloise Drane
Mmhmm. Why do you think it’s important to have or get rid of anonymity in the industry altogether?
Wendy Kramer
Well, it’s important to acknowledge that there is no such thing as anonymity to be honest and ethical, all reproductive, you know, clinics and agencies and sperm banks to be ethical and responsible. They should be honest about anonymity that there is no anonymity. So stop mandating this 18 years of anonymity when it’s not even possible.
Eloise Drane
Yeah, as a matter of fact, now, federal legislators are considering requiring, well, one requiring background checks for both egg and sperm donors, which could completely eliminate any anonymity outside of, you know, an agency arrangement. I’m sure you probably heard about this legislation. And what is your thoughts on that?
Wendy Kramer
I think, you know, it’s like, steering the Titanic. It’s like, it’s so slow. It’s been so slow trying to get changes. But I think you know, legislation might help turn the boat anything that can get this industry to be more ethical and more responsible is great. Currently, there is almost no oversight and no regulations. So nobody’s keeping records. Nobody knows how many kids are born for any donor, nobody knows medical information, nobody shares medical information. I mean, the whole thing is so to me, so unethical. It’s not like, this is an industry creating widgets in a factory, you know, and they have no records. This is an industry creating human beings, and yet artificial insemination in cows in the cattle industry. They have accurate records. They know every calf born, who the parents are, how many calves are born. And in the human reproductive medicine industry, we have no such records. There’s nobody mandating or regulating that this industry keeps any type of records on the kids being born on the medical conditions on anything. It’s so absurd. And the reason why is the American Society of Reproductive Medicine, they are the sperm banks and the egg clinics. They are the ones keeping any and all regulation from happening, they fight against it. So we have this very powerful and wealthy lobbying organization that keeps any regulation and any oversight and any accountability, responsibility and ethical behavior from happening.
Eloise Drane
But why do you think that is?
Wendy Kramer
Money? Whenever in this industry, whenever you say why did they do this? Or how come they don’t do this? Always, always the same answer. Money. Once you start regulating, they’re going to make less money.
Eloise Drane
Oh, yeah, yeah, well, that is definitely the problem. Because I recently read an article and by 2027, the infertility industry is going to be a 37 billion. So in five years, it’s going to be a $37 billion dollar industry. And I’m like, wait a minute, is that not ringing red flags everywhere to people about the fact that we’re actually going to have this many people dealing with infertility in just five years, right? It’s already occurring. But it’s going to get even worse, every single year, and nobody’s paying attention. Nobody is talking about it. Nobody even cares. Quite frankly, the only people who are really caring at this point is somebody who is endorsing this process right now. And instead of them stopping and opening up more fertility clinics and more programs and everything else, why aren’t we paying more attention to all of the issues that are starting to come because of environment and whatever else is also causing infertility?
Eloise Drane
A recent YouGov article and survey found some interesting information on the public’s perceptions of whether or not donor conceived children should have a legal right to know who their donors were. And here are some of their findings. The survey questioned 2000 US adult citizens, asked Americans whether they believe donor conceived people should be able to learn their donors identities, and what impact this change could have been a number of people willing to donate sperm or eggs. The majority of Americans 55% say people who were conceived with the use of sperm or egg donor should have a legal right to receive information on their donors identities after turning 18. About half as many 24% disagree and 22% were unsure. Women are slightly more likely than men to believe people conceived with the help of a donor should eventually have access to information about the donors identities of 58% compared to 51% and people who are parents 58% are more likely than people who are not parents 49% to believe children of donors should have access to their donors identities, mothers are more likely 63% than fathers 52% to believe this. What is your hope for the future of the industry as it relates to anonymity? Or on the flip side, the ease of connecting donor conceived offspring with their genetic donors?
Wendy Kramer
Yeah, just one note on those statistics. So those are people in the general public who are for the most part uneducated on donor issues. They don’t know why connecting would be important under the age of 18. They don’t understand what connecting means. They don’t understand that a donor has no parental rights or responsibility. So I think, to take a poll like that, you really have to clarify that these people don’t know much about the questions they’re being asked. You know, I think if you ask a group of educated people that understand everything that they’re being asked, I think you would get very different answers. So I just that on that. Yeah.
Wendy Kramer
So what I would hope for the future of the industry is that there’s some regulation and oversight, that there’s more ethics involved in the industry, more responsibility, more accountability, I think there should be accurate records, for starters, you know, know which kids are born from which donors because these, the sperm banks are still promising donors, limits on the number of kids that are going to be born. And that’s insane. They have no idea. You can’t promise limits until you have record keeping, otherwise, you’re just making up a number, which apparently, they’re all still doing. So have accurate record keeping, then limit the numbers, you know, having 100 or 200 or 230 kids for one donor. There are so many reasons why that’s negative. Currently, and we know this in the egg facilities and the sperm facilities, they are not contacting donors to update medical records. Yet many donors say that they or their close family members do have a medical issue that would be important for families to know.
Wendy Kramer
So a lot of diseases or adult onset, you know, what you get with a donors profile is a snapshot of one day in the life of a healthy young donor, you don’t know what happens the next day? Did his father have a heart attack? Did he get diabetes? Was he diagnosed with schizophrenia, you know, when he was 23 years old, all these things happen. So updating and sharing medical records, once you have the accurate records, then you can actually share and update medical information. And acknowledge the end of anonymity, it ended 17 years ago. So just acknowledge it. And also read the research, you know, understand why contact under the age of 18 is important. It’s like they just won’t even look at that, they won’t consider it. And I think they can only do that for so long. Look at the data look at the published papers about how anonymity affects donor conceived people, then make policies based on not just the rights of the clinics and the sperm banks to make money, not just the right of a donor to be anonymous for 18 years or forever, not just on the rights of a parent to become a parent and have a child. But also in that conversation needs to be donor conceived people, how have all of these policies throughout all these years affected the actual people that everybody’s working so hard to create? Those voices, in my opinion should be the loudest and certainly included in the conversation.
Eloise Drane
So what would you tell someone who has to consider utilizing a donor, you know, sperm donor or egg donor? And and I know we keep talking about sperm donor or egg donor. But we also need to add an embryo donation in here as well. Because although there are embryo donor programs that have open donations, but there’s a lot of programs, especially to fertility clinics that have these leftover embryos, and then they also donate them anonymously.
Wendy Kramer
Yeah, we have on the donor sibling registry, we have egg donor families, sperm donor families and embryo donor families. With the embryo donor, basically, then a child is still looking for their genetic parents. This time. It’s both, you know, so it makes it even, it’s like being adopted. Basically, you have two genetic parents that you don’t know.
Eloise Drane
Mm hmm. We had a guest last season that donated their embryos. And after she donated the embryos, she actually went back to the clinic to just find out anything. Was it successful, who did you donate it to? Did they even get pregnant? And the clinic was like, Nope, we can’t provide any of that information to you whatsoever. And they should. Yeah. Then she asked why. And they were like, well, that’s just our policy. And she’s like, well change your policy. There’s nothing in anywhere that says that you cannot change your policy. And
Eloise Drane
Well, no, I was just gonna say a lot of the clinics use this bogus excuse of it’s because of HIPAA laws. We can’t tell you which is 100% BS. HIPAA has nothing to do with this. We’re not asking to see someone’s personal medical records. But that’s one of the excuses they use to make it sound legitimate.
Eloise Drane
Well, in Colorado. Colorado recently passed legislation that there really is not supposed to be any more sperm or donor anonymity, effective 2025
Wendy Kramer
No this effective, we won’t know what’s happening until 2043, when those kids turn 18. And my question is, who is going to be regulating and monitoring this industry for the next 21 years? Nobody. So Is anything going to change? I have no idea, but I’m definitely not hopeful.
Eloise Drane
Yeah, which is completely unfortunate. Well, I guess my last question is, what would you tell someone who’s considering becoming an egg donor or a sperm donor or even donating their embryos?
Wendy Kramer
Yeah, I would say come to the donor sibling registry website, and read the paper that we wrote called, Are you considering donating your eggs or sperm? And actually, I have a Psychology Today blog that I contribute to once a month. And the article that I’m just about to put in tomorrow is, Are you considering donating your eggs or sperm, so you might want to read that article, it’s all of the things to think about, you know, like we talked about earlier, it’s not just a monetary transaction today, this is something and here are things you need to be aware of this will affect you, and your current family or your future family, for the rest of your life. So these are things that need to be and not just in 18 years, you’re not going to be anonymous for 18 years, most likely, most likely you will be found at anytime starting, you know, as soon as that baby’s born, or even before donors are found, you know, and this with it’s not just the DNA testing, it’s the internet, it’s you know, people take things from the donor profile, people put the pieces together. So donors, I would tell them, if you want to be anonymous, and you don’t want to be found, then don’t donate, period.
Eloise Drane
Well, I think we’ll end on that note. Thank you, Wendy for being on the show with me today. We’ll be sure to add all the information and the links to the donor sibling registry on our show notes. And I appreciate your time. And I appreciate everything that you’re doing for our industry and then for the donor conceived people as well.
Wendy Kramer
Thank you so much for having me.
Eloise Drane
Thank you so much for listening. If you found this episode helpful, please rate fertility Cafe on your favorite listening platform, and share this episode with anyone you think could benefit from hearing it. Thank you so much for joining me today. Until next time, remember, love has no limits. Neither should parenthood
