DISCLAIMER: Today’s Advertiser helped make the production and delivery of this episode possible, for free, to you! But the themes expressed by the guests do not necessarily reflect the views of Inside Reproductive Health, nor of the Advertiser. The Advertiser does not have editorial control over the content of this episode, and the guest’s appearance is not an endorsement of the Advertiser.
Are you considering the broader implications of third-party IVF in your practice?
Today’s guest, Melissa Lindsey, Founder of the non-profit Donor Conceived Community and a member of the donor-conceived community herself, delves into the ethical and real-life consequences of third-party IVF. She offers a much-needed perspective on how clinics and egg banks can better serve donor-conceived persons
Tune in as Melissa discusses:
What clinics and egg banks are doing wrong (and what some are doing right)
Why Everie isn’t scared of the DCC (Instead taking a proactive interest)
Last year’s legislation in Colorado
What’s fair for donor-conceived persons to expect vs. what someone can require of their own biological parents
The real-life consequences for a donor-conceived person (False medical history, denied genetic testing, etc.)
Donor Conceived Community
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Melissa Lindsey
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Transcript
[00:00:00] Melissa Lindsey: I know it's an industry, I know it's profitable, I know there's all these goals for expansion and scaling. When you scale a practice, it can be harmful to people and puts them at a disadvantage for their life. Span, it's important to see where you can fix that before you scale it. And some banks don't have practices that even meet the standards within healthcare.
Many of them do not keep their records because they're not required to. So when a parent goes back and asks a question, they just say, oh, we don't have that anymore because they weren't required to keep it.
[00:00:37] Sponsor: This episode was brought to you by Everie Egg Donation. Everie Egg Donation is pleased to bring you Melissa Lindsey, Founder and Executive Director of Donor Conceived Community, who provides emotional and social support to Donor Conceived People, DCP, facing identity discoveries.
To learn more about Everie head to www.everiedonation.com/for-clinics, that's www.everiedonation.com/for-clinics.
Announcer: Today's advertiser helped make the production and delivery of this episode possible for free to you, but the themes expressed by the guests do not necessarily reflect the views of Inside Reproductive Health, nor of the advertiser.
The advertiser does not have editorial control over the content of this episode, and the guest's appearance is not an endorsement of the advertiser.
[00:01:44] Griffin Jones: Consequences, ethics, there's a lot of those to consider when it comes to third party IVF isn't there? You are helping intended parents. You are serving donors. And though you're not involved in obstetrics or pediatrics, you are part of delivering a product, and that product is a human being. The real life consequences for donor conceived persons are many.
We didn't even get into many of the craziest real life examples. I guess that will have to come in a future episode. And you're involved whether you like it or not. How much input do you want in the matter? These are issues that I talk about with my guest, Melissa Lindsey. She's a member of the Donor Conceived Community Lowercase, and she's also of the founder of the Donor Conceived Community Uppercase, a 501c3 organization.
They were inside the ASRM conference with the booth last year, and it's probably not clear from our conversation, but Melissa was not Outside, with the folks that I and possibly yourself quickly walked past. False medical history, erroneous information in the EMR, denials from insurance companies to do genetic testing to assess risk.
These are some of the consequences that Melissa talks about. I ask her what some clinics and egg banks are doing wrong in her view. What are other clinics and egg banks like Everie doing right in her view? Why isn't Everie scared of this community? Why are they interested in being proactive? We talk about last year's legislation in Colorado, and I ask Melissa, what's fair for donor conceived persons to expect compared to what someone can require even of their own biological parents?
I don't have all the answers. I think there's an ethical discussion to be debated in good faith about what's truly fair for all parties involved. But the more third party IVF you do, The more donor conceived persons come into your world, hoping that they don't expect any kind of information or resources from your ag bank or your fertility clinic is a bad strategy.
Hoping that they don't expect any kind of information or resources from your ag bank or fertility clinic is no strategy, and ignoring them is a bad strategy. I would really like to hear your thoughts on this matter. Email me or comment on the social posts and enjoy this conversation with Melissa Lindsey.
Ms. Lindsey, Melissa, welcome to the Inside Reproductive Health podcast.
[00:03:51] Melissa Lindsey: Thanks. I'm happy to be here.
[00:03:53] Griffin Jones: We connected, uh, a little while, uh, back because oftentimes I don't have people from outside of working in the fertility field connect with me and, and every once in a while a patient will reach out or maybe someone else will reach out because they enjoy being a bug on the wall for Our type of media, and you don't come from the patient side or the donor side, you come from yet a third category of folks.
And then your name was brought back up to me recently, but we have not covered much about the donor conceived community on this show. And I think that the field should be aware of what's going on. But let's Maybe start with just a view of how did this community come together? Like, how did donor conceived persons find each other?
Like, what is their, is there an organization? Did you just connect with each other on social media? How long has this been going on? Give us the overview.
[00:04:57] Melissa Lindsey: So I, first of all, I am a donor conceived person. I found out when I was 39 years old through a chance conversation and a 23andMe test that my dad, who I always assumed was my biological father, was not my biological father, and that I was sperm donor conceived.
I had a lot of questions. I went to the standard first layer of questions of people who are experts that I thought might be able to help me, including my family doctor, mental health provider, Google, looking for resources of what does a donor conceived person do. I didn't actually even know the phrase donor conceived.
I could only find sperm donor baby, it's like that was where I was frozen in time as a sperm donor baby. So it took me a while to find. any information. I called a lot of clinics, I called a lot of banks, and I had the assumption coming from my background in marketing and customer service and sales that this would be part of the community that people would be addressing from a customer service standpoint of obviously we made this person, so what, what are the resources for this person when they need information?
Number of siblings or medical history or what am I made of? And I was very surprised when I was calling banks and clinics. And talking to healthcare professionals, where do you send these people once they have questions? And the answer was, well, we don't have anything for them. And that really surprised me because everyone knew that we were going to show up on the scene.
So, where were the resources? And I thought I just wasn't good at finding them. So, I kept looking, but I couldn't help but take note of this, what appeared to me, to be a big gap in resources. So eventually I figured out that I was called Donor Conceived and I also found a Facebook community of called We Are Donor Conceived and there were a lot of people sharing their experiences there.
I really learned a lot in that space. It was also a bit overwhelming because you're hearing from people every day who are going through discoveries or have questions that they can't find answers to. I saw a lot of themes in the experiences of donor conceived people. At the time, I was planning to go to grad school for occupational therapy.
One of my main goals at that point was to help people recover from Whatever hardship they were facing and live the best life they could based on this hardship. And I started to really see an overlap in a lot of donor conceived people were facing hardships that impacted their everyday life. And I decided to start some peer support groups for people to have smaller conversations, to hear each other's stories, to share their expertise.
And I just thought it would be a side thing, a few peer support groups for people to get together. It was during COVID, so people were getting more adept at spending time on Zoom to make those connections, and it also offered people a bit of privacy to have those conversations. I didn't anticipate it taking off the way that it did, and soon I had a wait list and more groups, and then I was leading five groups a week for donor conceived people to have these conversations, and I realized that I would be doing this forever if we didn't help the parents Talk to their kids about donor conception.
And in listening to the parents, I learned that they weren't getting what they needed from professionals who were helping them grow their family. And so the mission kept getting a little bigger and broader as I saw the need. And so I finally realized that this calling that I had stumbled into was really a place that I could make a difference for a long time.
And so I started Donor Conceived Community as a 501c3. where we want to make the world a better place for donor conceived people.
[00:09:18] Griffin Jones: What information and what resources specifically was it that you were looking for?
[00:09:24] Melissa Lindsey: Well, one example is I had spent my entire lifetime assuming that I had a predisposition to Some medical issues, some cardiac, some cancer, some mental health concerns, and I was pretty vigilant about watching out for those.
So when I went to my family doctor and found out that my paternal medical history did not apply, I was talking to the medical assistant and said, I'm not sure what to do now. And she said, I don't know. This is fascinating! I've never deleted someone's paternal medical history before. I have no idea how to do it.
Let's ask the doctor. So then, I asked my doctor that I had a great relationship with to, I gave him the news. Surprise, my biological father isn't my biological father. I'm actually a sperm donor conceived, and he said, wow, you know what, when I was in residency, they asked us to donate, and I am so glad I did not, because who knew 23andMe would be coming around the corner, so I'm so glad I didn't donate, but you know, at least you know that it was, you know, probably somebody screened, that your parents really wanted to have you, and you know, Well, just put unknown for your history, although I'm not sure how we're going to update the electronic record side of it.
And so to this day, I still have cardiac conditions that pop up as predispositions. I can't get rid of them, but I've lived my whole life assuming that they were in place. But the question I asked the doctor at the time is, what if there is something? that I'm missing there because it's not, he said, well, just put average risk for everything.
And I said, what if it's not average? I don't know if I should be on the lookout for breast cancer or ovarian cancer. I don't know what things could be coming down the road for me. And there were no answers for that. I asked about genetic testing and he said, well, it wouldn't be covered with insurance because it's only covered if you know you have a risk.
So I would have had to pay out of pocket for genetic testing to assess my risk for cancer. Cancer and cardiac. And it's also a myth that doing genetic testing covers all of that because even a genetic counselor would let you know that fam, family history is one element of genetic testing. They can't just test EV for everything.
They still wanna know what's happened. If you have that information available, what's happened among your genetic family? I was so nervous about how many siblings I had. I had a story that I thought back to when I was in college. People used to stop me and say, oh, I saw you in the quad or I saw you in the cafeteria.
And I'd say, that wasn't me. And so there was this person for several years that people would say, you, you know, you have a doppelganger somewhere here at school, which I thought was really interesting. And you always think, what does this person actually look like? My senior year, last semester, there was a convocation.
Once a month for our school and I looked down like six bleacher rows and I saw this person from the side that looked just like me and I, I was like that's the person everyone's been talking about and I couldn't make my way to her before the group scattered but as soon as I found out I was donor conceived, I thought what if that was my sister?
[00:12:56] Griffin Jones: Did you ever find that out?
[00:12:58] Melissa Lindsey: I don't think it was. I did get some information that means that that's unlikely, but I'll never know for sure. I do have relatives that, it turns out I was living 15 minutes from my uncle at the time, my genetic uncle, I just didn't know it. And, but he doesn't have any daughters, so I don't think it was, you know, It could be just a fluke, like we all have doppelgangers that we're not related to, but those are the kind of moments that come back for someone who has this discovery.
And the reality is nobody can answer the question how many siblings you have. And so it's a very overwhelming thought for a donor conceived person to, not just in late discovery, but for people who've known their whole lives they're donor conceived, but they don't know who their siblings are or where they're located.
[00:13:54] Griffin Jones: EMR information, insurance authorization, these are two implications to second and third order consequences that I never would have thought about. Uh, sure. And so there's, there's a lot more to this. There's a lot of implications for this. Not knowing if you're donor conceived and not having that associated information.
I want to come back to that CHANCE conversation, but before we do, the people that brought this conversation back up to my attention, it was Aisha Lewis from Avery, they're an egg bank, and I think that they're going to sponsor this episode, but they do not have editorial control. So if, if you like them, if you like other people, if you, if you don't like them, like you're allowed to say whatever the heck you want, but it does make me curious of, about egg banks and clinics of what are they, what are some egg banks and, and clinics doing wrong in your view?
And what are some doing right in your view?
[00:14:58] Melissa Lindsey: Great question. So many. Many banks are looking at their potential customers, focusing on the fact that they really want to have a baby, focusing on the fact that they have possibly been through a very long, expensive experience to try to grow their family, and in their effort to Provide or meet that need, they are bringing their patients to the point of a positive pregnancy test with the goal of a healthy baby and not paying attention to the fact that a healthy baby will become a healthy child and a healthy adult and a person who is donor conceived for their entire lifespan and there's the feedback from the parents now is You know, we want to be set up well for parenting across the whole lifespan.
We don't want to have these disadvantages just because we needed to use third party reproduction. We, we shouldn't have to wonder if our child has a hundred or two hundred siblings. We shouldn't have to wonder if our donor profile is correct. We shouldn't have to wonder if the information that the donor gave voluntarily was, you know, checked or not to be valid or true.
We have so many people who share the experience of the donor profile, you know, the, the university was made up, the degree was made up, the, the ethnicity was not accurately reported, the, and whether that was intentional or not, some of those things could be validated with a little bit of effort. And so the, the practices that are challenging are when it becomes our only goal here is a positive pregnancy test and a healthy baby, healthy pregnancy and delivery, and we're, as long as we get them there, we've done our job.
And the other challenge is when it, you know, I know it's an industry, I know it's profitable, I know there's all these goals for expansion and scaling. When you scale a practice, can be harmful to people. and puts them at a disadvantage for their lifespan. It's important to see where you can fix that before you scale it.
And some banks don't have practices that even meet the standards within healthcare. Many of them do not keep their records because they're not required to. So when a parent goes back and asks a question, they just say, Oh, we don't have that anymore because they weren't required to keep it.
[00:17:46] Griffin Jones: They all say they screen very thoroughly.
They all say, you know, when I, when I, because many of them have advertised on the show and I think, I think the ones that have advertised in the show are, are probably the good ones or at least that's, that's how I perceive them and, and, you know, they tend to be specific when they talk about what they're screening for, but, but everyone that you talk to with regard to ag banks says, you know, we screen the most thoroughly.
Is that not the case?
[00:18:16] Melissa Lindsey: Well, I think. One of the challenges, we screen the most thoroughly. It depends on what they're calling thorough. I mean, some, some banks would tell you they screen thoroughly, but they don't verify if the person is who they say they are because they, that would take too much time and they don't have, it would be too expensive, it would drive up the cost.
You know, we may see resistance to even taking a state ID sometimes to validate the identity of a person. We see people who talk about genetic testing or screening or they'll say we follow the standards and they imply that those standards include a certain type of genetic testing when the FDA standards haven't really changed since then.
The 90s, so it's not the protection for parents that they assume is in place. And so going from one bank to another, very different practices, and parents don't know that. And so when, when, when banks say we're screening thoroughly, that means something different in different places, and parents don't know that.
[00:19:26] Sponsor: In the world of assisted reproductive technologies, Everie Egg Donation is at the forefront of known donation, redefining the donor conception experience with equity and transparency. Everie is dedicated to giving the donor conceived community the opportunity to know their lineage. Everee Egg Donation's unique Mutual Match system empowers both donors and intended parents by giving them an equal voice in the process, fostering deeper connections and transforming the traditional donor conception experience into a collaborative journey.
Everie is setting new standards in the world of egg donation, ensuring that donor conceived individuals have the choice to know their origins. Discover how Everie Egg Donation is leading the way in supporting the donor conceived community and how you can be a part of it at www.everiedonation.com/for-clinics.
[00:20:42] Griffin Jones: So if egg banks are doing it right, and if Avery is one of them, what are they doing?
[00:20:49] Melissa Lindsey: They are making sure that donors understand the implications of donating, that they understand that they will have genetic offspring or biological children or genetic children out in the world.
They are making sure that the donors are prepared to disclose that information to their own children someday, to their future partners, that this shouldn't be a secret and they should be prepared to talk about it. If there's so much stigma around it for them, it's probably not a good idea to donate.
They're doing psychological interviews or screenings and testing their meeting with a mental health provider to make sure that they understand the implications so that they can make a true informed consent to the procedure that they're going to go through and, and then doing the genetic testing that they're going to go through.
Uh, ASRM recommends, or that the guidelines recommend, because they're not required, it's a recommendation. So they're following those recommendations.
[00:21:57] Griffin Jones: It seems to be it's about informed consent for the donor, or at least it starts with informed consent for the donor. What about the people like you that were conceived from donors who did not get informed consent?
What's, what is fair to those donors, and fair to The people conceived by those donors.
[00:22:20] Melissa Lindsey: This comes up a lot because if people donated when they were told it would be anonymous, that was the technology at the time, right? Nobody knew that DNA sequencing was going to become a thing and that consumer DNA testing was going to happen.
I do, I find it interesting when people say, well, that wasn't what we were told was going to happen 40 years ago. 20 years ago, 15 years ago. And some of those people are even medical professionals who are experiencing the benefits of here's how we used to do this surgical procedure, and here's how we do it now.
So we have all these advances in technology that we benefit from daily. We aren't saying, well, when I started my practice 20 years ago, this is how we did it, so I'm not going to innovate. I'm going to stay in the same place. With my processes, we have facial recognition, we have Google Maps, we have all these abilities with technology that we have to keep up with in every other aspect of our life.
So, recognizing that anonymity and donor conception is gone really shouldn't be isolated from all the other places that we're experiencing advances in technology. We can do things in 2024 that we could not do in 2020 or 2010. That's the reality and that's true of all kinds of decisions we make in our life where there are implications for those decisions that we couldn't foresee and we have to adjust to that.
So I don't know that there's any contract that could be created that It takes away the impact of technology because we, that's the reality of the world that we're living in. I could have a photo of someone that now I can do facial recognition software and that's not just true in donor conception.
That's true because photo, because facial recognition exists, so.
[00:24:32] Griffin Jones: Is it the right thing in your view that if, if a donor, you know, let's say that, you know, this is a donor back in the early 80s and had no idea that they were ever going to be known, was told that you're just going to be completely anonymous, this is between the biological parent, or excuse me, between the intended parents and the child, and you're just helping a couple in need, and you're just, you know, you're You're just a servant in this moment, and then you're out of the picture.
If that was the person's expectation, is it fair now to just, to, to require that their identity and their information be disclosed to the, to the child, the, the donor conceived person?
[00:25:20] Melissa Lindsey: So I think it, I think require would be the, the place I would say that's probably too strong of a word. I think understanding that it's possible and understanding, understanding that it's likely that the identity will be discovered is, is really important for the clinics and banks.
and existing practices. I think one way through that is there are a lot of donors who they made the decision very quickly or because of financial need or without understanding the implications and now they're curious too and they would like to make their information available. understand the implications of that donation.
They are curious about what happened and so they would like to make their information available or maybe they just understand the implications of family medical history. They are often going back to try to find a place to make that information available and they're, and either sometimes, I mean often the place isn't in practice anymore, but they register with like Donor Sibling Registry or other, or they contact the bank or clinic and say, can I make my information available?
And that's one practice that I think we really need to see increase is that the bank's having a mechanism for somebody to come back and say, I did this under anonymity, but I don't, I want to be available if they want to reach out to me and being willing to host that mutual contact or facilitate that I think is an important piece and we see that in other places where anonymity is held for a certain time, but then both people can opt into knowing each other.
We see that in, you know, organ donation. We see that in other places where for a certain time, you're not going to know the identity, but then if both people agree to it. So I think that's one element that could really be helpful because we do know that the donors also are curious after the fact.
[00:27:30] Griffin Jones: Tell me about the conversation that you mentioned that it was 23andMe and a chance conversation.
What was that conversation?
[00:27:40] Melissa Lindsey: The details are a little left open for interpretation, but the story that I heard was that my parents, when they're planning to use a donor, had planned to tell us, and so they shared that conversation with their decision to use a donor with family friends. The family friends thought that we already knew, and so they just made a remark about finding our biological father if he was still alive, and that was not information that I even knew.
My dad passed away when I was 15. So, the thought that there would be a biological father possibly alive in the world was very confusing at the time, but, and I didn't know what to do with that information, so I took a 23andMe test and started to try to find out what I could, but I was Also, not sure if I even wanted to know at that point because I, it was just a big surprise.
[00:28:42] Griffin Jones: The 23andMe test came after the conversation. How did the conversation get brought up? Did this family friend just one day say, Hey, he had taken a 23andMe
[00:28:53] Melissa Lindsey: test and was talking about his 23andMe report and then just saying kind of offhandedly, Oh, you could do this too. You might find your biological father.
[00:29:04] Griffin Jones: But it was just a throwaway comment. It wasn't, you had never talked about this with this person before? You know, this, presumably this was a family friend that had been a present throughout your life, but this was the first time that this person ever mentioned it?
[00:29:19] Melissa Lindsey: Well, so one interesting thing, this is a very common experience for donor conceived people, is I call them dog eared comments, where you Start to look back throughout your life and notice other comments along the way that start to make more sense and you can't even remember why you remembered the conversation.
So, I remember at one point, so I wanted to be a doctor growing up. That's, I wanted to be a family doctor and that was kind of the thing I talked about continuously from 6th grade until my freshman year of college, I'm going to be a family doctor. After my dad passed away, I definitely He was my biggest supporter, and I just probably didn't even realize at that time how much I was going through.
But this family friend said, you will be a doctor. And I thought, why did he say that with such conviction, with such conviction? Sureness. So later, when I learned that my biological father was a family doctor, I thought he knew that. He knew he had this extra little bit of information that I didn't have at the time.
Of course, you know, going through college at that point and doing career counseling and the fact that my dad had been in sales, you know, it seemed like this mismatch a little bit that I was so interested in becoming a family doctor, so I didn't have that information at the time, but that was one of the conversations along the way that, and they also seemed to marvel at how much I looked like my dad.
So that's another comment. Wow, you even have a dimple on the same side of your cheek as your dad. That's just crazy. It's really crazy if you know I'm not genetically related to him. But, at the time, I was just grateful to have a dimple on the same side like my dad because I really missed him, and so that was a nice thing to carry on, so.
[00:31:24] Griffin Jones: Comments that add up over time that, you know, just as one offs, it's like, okay, that could be anything, but when you get more information, it almost sounds like pieces of a puzzle that you're starting to arrange together.
[00:31:39] Melissa Lindsey: And that's such a common experience for donor conceived people. In fact, that's one of the major elements in the peer support group is putting together those pieces, and it comes with some hardship for donor conceived people because they realize how many opportunities there were for the truth to come out, when it didn't.
And that includes, yeah, I had a conversation with my mom, I need to update my family medical history, at what age did grandma have her heart attack? And my mom said, oh, you don't need to worry about it. I was like, why wouldn't I need to worry about it? You know, what kind of cancer did my uncle have first?
Was it testicular cancer that spread to the, you know, or was it colon cancer that spread? And I was trying to find out which one and she said, you don't need to worry about it. Why? Why would I not need to worry about it? And that would have been a chance to tell me the truth, but it was, it was too hard and, and also they didn't have any resources and nobody had gone back to all these parents that for 10, years, the industry said, you don't need to tell.
And nobody's gone back to those parents. Nobody's equipped them to say, hey, we gave you the wrong advice. You need to have these conversations with your kids and here's some places to start. Even now, if a parent of a donor conceived person went to their pediatrician and said, what are some tools and resources that you can share with me to talk to my kids about how they were conceived?
There is nothing on the American Academy of Pediatrics website for how to talk about this, which is crazy when you think about how big the industry has become. There are no tools or resources. For a parent who does want to figure out how to talk to their children about it. And so, one thing I'll add, because I've talked about this late discovery piece, is there's a big myth in the industry that this is only a challenge for people who are not told that their donor conceives, or they are not told.
Late discovery, as we would call them, which is really untrue, but I understand because I had the same assumption. I thought I was going to be helping late discovery people like myself, and so the more I listened in the community, the more people were asking, do you have a group for early disclosure? Do you have a group for people who've always known?
Do you have any resources for keeping track of 30 siblings? Do you have any resources for telling the sibling that doesn't know? So I've known my whole life. But I have five people who've reached out to me in the last year who didn't know. What should I tell them? How do I, how do we keep track of our medical information and keep it private?
How do we welcome a new person into The sibling pod, what language should I be using? Like, there's all these questions that they have, even though they've known their whole life that they're donor conceived. So this is not just a challenge for late discovery.
[00:34:48] Griffin Jones: In order to get to this discovery, the consent that has to happen for both the donors and the intended parents, what is the, after that informed consent is achieved, what are the What, what is the reasonable expectation of what should be disclosed to to donor, to donor conceived peoples?
Because does it mean, okay, if I'm, if I'm a, if I'm a donor conceived person, I should be able to see how many siblings I have by the donor. Do I need to do as, as a donor that is like other donor conceived siblings? Do I need to be able to see the siblings that that. donor had with their family, you know, that there are, that, that are their legal children.
Tell, tell us about what, about what the expectation should be.
[00:35:40] Melissa Lindsey: Well, I think we can look to the recent law that is in place, well, it has passed in Colorado, which is at 18, a donor conceived person would get the information for the identity, the identifying information of the donor, so at least they know who it is.
They also would have access. to the updated family medical history because that bank, clinic, or agency is going to make an effort to reach out every couple years to the donor to get the updated family medical history. So, that donor conceived person would have access to the updated family medical history, which may or may not include the history of that donor raised children.
At that point, they might have children of their own, and they might say, these conditions have changed. I've shown up with my children that I'm raising, but they hopefully would have updates on this is what happened to, you know, with my mother or aunt or father. So that updated family medical history, the identifying information of the donor are two of the minimum thresholds that we would ask for.
Another one is to just know that there's a limit to how many times this donor's sperm was used. And so there's a 25 family limit. in place for this Colorado law to say the bank or clinic has to make an effort to limit to 25 families so that that donor conceived person isn't wondering if there are 50, 80, 100, 200.
They would have a reasonable limit. in their mind of how many siblings are out there. Now that's a family limit, so that could be two, three, four children per family, but at least having some upper limit of the possible number, and that 25 is still really high. We, there are banks like Sperm Bank of California that have a much lower family limit, and parents are often looking for that, to have that lower family limit, to know that there are 10 families, and Also, banks or clinics can offer services to those parents to help them connect and communicate among that sibling group, which is what many parents choose to do.
And they would know then the identity of the other families, if they happen to be in the same elementary school or high school together. They understand if they're going to college together, but they can also start to make those connections if they choose to. That might help with their identity formation too of, you know, Oh, I have a half brother who is interested in the same thing as me, or I have two sisters who, you know, one, one story that was shared, a donor conceived person contacted some siblings.
They were late discovery. They didn't know they were donor conceived, but the rest of the sibling group did know, and they grew up together. So, yeah. They had gone to each other's graduation and to weddings and gotten together once a year. And so they were the newcomer to the group. But part of that newcomer conversation included lots of conversations of, did you have the same experience?
And it was really simple and sad and touching to find out that This person, they asked, did you have really bad acne in high school, in college? Yes, I did. It was so, I felt so insecure, you know, it was such a hard thing. And they shared that many of them did, but the sibling group got to share which medication worked best for them.
So early on, the oldest shared it with the younger, and then they, got an intervention that worked really well for them. And so this person, like, I went through college and still didn't land on this medication until this point later. And they all expressed the sympathy of, gosh, we wish we would have known, we could have told you which, which medication worked best for our, our variety of acne that apparently was genetic.
And so it's just a simple thing, but parents sharing You know, when they start walking, and when their teeth are coming in, and when they're learning to read, and what sport they are interested in can be really valuable, um.
[00:40:13] Griffin Jones: In that Colorado legislation, is there a requirement to disclose to the donor conceived children the siblings that they have that are not donor conceived?
[00:40:25] Melissa Lindsey: No, it's, it's not, it doesn't require even identifying the siblings who are conceived through donor conception. It just has the limit of 25 families.
[00:40:35] Griffin Jones: With regard to medical history, um, medical history could be like, This gigantic pool, it could be a, it could be a shallower pool if we're talking about more general categories.
I don't, I, I don't know what rights I have as a child, and, and I'm going on the good faith assumption that both of my parents are my biological parents, though you did the same thing. But I don't know what rights I have for, like, to, you know, to get medical history from them. So, how is the depth of what, you know, the Colorado legislation, for example, asks for and what someone who is able to ask of their biological parents asks for?
[00:41:22] Melissa Lindsey: Yeah, this comes up a lot, especially with ASRM, you know, what rights should a donor conceived person have and are they, is requiring them fair if they aren't required of everybody else? So, you know, I, I didn't have rights. Nobody can force my mom to tell me her medical, family medical history either. Um, So, I think that's true, nobody's required to share medical history in the area of not assisted reproduction, um, but I, I think in general, this is where the privilege piece of it comes in.
We don't recognize the privilege we have when we have it. And so, when we have the privilege of being raised generally around the people that we are genetically related to, we don't notice that that's the norm because that's what everybody is experiencing. And then we have sympathy for the exceptions and we have practices in place for the exception.
And so there are people who are adopted, there are people who have misattributed parentage, there are people who are single, raised by single parents who don't have, or just for a variety of circumstances, don't have family medical history, but that's known. It's known that you're missing that information.
You're not operating under the assumption of false medical history and walking through your life with false medical history. So, it's one thing to say to a doctor, I don't know, it's missing. It's another thing to say, this is the medical history and have it be false. For donor conception where there is a system in place to create a person where we have the choice To provide medical history or not, if we know it is ideal to have the medical history for a person to have early prevention, diagnosis, treatment, then we should be making a best effort to provide that for a person, especially if someone's profiting from it.
So if you have a system in place that people are profiting from, you should be making the best effort to set that person up. for what you hope would be happening in, in the other cases of good medical practice. And so we know that genetic counselors and healthcare providers would like to have three generations of family medical history.
That's the intake. for a donor. Three generations of medical history. So we should be setting up donor conceived people so that they're not systematically at a disadvantage to the rest of the population. And again, we say general population because are there exceptions? Yes. Some people don't have their family medical history, but we shouldn't set up a system That creates that problem for everybody who's donor conceived.
And I think, too, it really, it isn't fair to say if you're a single parent or you're an LGBTQI plus parent, your children should just automatically be missing half their medical history. That's just the consequence of your family building choice. You don't get to have The same family medical history that heterocouple would have if they had unassisted conception.
So I don't think it's fair to put all those parents at a disadvantage.
[00:44:56] Griffin Jones: Speaking of ASRM, I'm not speaking about the organization, I'm not speaking on I really don't know what their relationship or position has been. I'm speaking about the conference and the attendees at the conference, including myself, who I think were scared of the donor conceived people that were, that were at the conference just because I didn't know anything.
And I think many other people didn't either. And then whenever you see people You know, in attendance, protest is probably a strong word, but there was, you know, there, there were signs and there were, there were people, and we live in a day and age where everyone wants you to join their social cause immediately.
And even if it's a good cause, it's just like, how can you not be part of our cause immediately? And then, and so you want to avoid it. You know what I mean? Like if, if India, you know, wiped off Sri Lanka from the map right now, and everyone was like, how can you not join in the Sri Lankan cause? I'd be like, because I need to learn so much more about it.
Like I needed to learn about the history of the North of Ireland before I could ever, you know, for hours upon hours. And it took me years to do it before I even had like, okay, this is what I really believe about this situation. And so I'd say all that just to say that. Many people are like, I'm just, I don't know what's going on.
I'm going in, I'm going into the conference. And one thing that brought this back to my to is one you connected with me on LinkedIn. I was like, oh, she seems nice. She seems friendly. And then, you know, I was talking with Aisha Lewis from Evry, and I could tell like, oh, Iisha is not scared of them. Why isn't she?
Like, what, what? Like, why wasn't she nervous about approaching this topic?
[00:46:45] Melissa Lindsey: There's so much in that question. So I think it's easy to lump all donor conceived people and all donor conceived experiences together when in reality it's just a collection of many experiences and there's a big range on those experiences.
So one donor conceived person cannot speak for everybody's experience. And so, but I think it's similar If we, if we listen in the industry with the same, same goal that we've been listening to fertility patients, which is they're going through hardship, they're feeling desperate, they're feeling like they're out on the margins, and there's a lot of grief and loss and confusion and desperation there.
So, we recognize that parents are coming into this, or intended parents are coming into this. Feeling very vulnerable. That's true for donor conceived people too. And so when you have people in communities who are feeling like they're not heard, feeling like they're ignored, feeling like they haven't been seen, while they're experiencing hardship, it's not surprising that there's strong emotion there.
And that strong emotion can be scary for people. Especially, and I think this is kind of the underlying piece, it's you. When you're, when you see something that is a blind spot for other people, it's very easy to assume that they just don't care. When, when we're trying to talk with professionals in an industry and the industry says, you're not our customer, you're not our clients, we don't need to worry about you, that's gonna cause some anger.
Like, we don't care what happens to you. Because, you're not our customer. So that's part of the intensity behind the protest was some statements that were made by ASRM of, you're not our customer. And some of donor conceived people, they're going through fertility treatment and third party reproduction themselves.
Like just because you're a donor conceived person doesn't mean that you're not going to be a single parent or need gametes in your family. The idea that donor conceived people shouldn't matter because the parent was the customer, I think that has caused a lot of tension in the conversation that honestly doesn't need to be there because donor conceived people are literally part, they are the success rates for a third party reproduction.
So if there were, if we weren't here, there would be no success rates. So I think, I think the reason Ayesha and some others have wanted to work with you donor conceived community is because we are solution oriented. We want to solve problems and we understand that this industry, we're not trying to get rid of donor conception.
We're not trying to drive up the cost so that it's. It's unattainable for people for growing their families. And we, we do think that by providing some support services, this really can be better for everybody. Providing education, providing support, and really helping speak into the process and the policies and the structure could really help make this better for everybody involved.
And so we want to center the donor conceived people, but we understand that there are parents and donors and professionals who do want to do the right thing. So we just want to help that happen for those who are listening, who do care. And so I assume, I can't do anything about the people who don't care about donor conceived people.
I can tell my story, I can tell other stories, but I trust that there are many professionals out there who want to do the right thing, they just don't know. And so when I, when I talk with Aisha, I know that she cares about building healthy families. So let's have conversations about how we can do that.
And You know, I'm gonna go into that conversation looking to work together to find solutions.
[00:51:21] Griffin Jones: I want to give you the concluding floor. And prior to recording you had mentioned, uh, a professional group that, um, that is, is coming to be. Um, you can conclude about that. You can con conclude about anything I didn't ask you and I should have.
The floor is yours.
[00:51:37] Melissa Lindsey: So, in the effort to help professionals learn more about what, how donor conception impacts donor conceived people and really all the, all the things that, um, we could do together to help improve the well being of donor conceived people, we started DCC Professional Group and it's a multidisciplinary group for embryologists, genetic counselors, fertility doctors, marketing professionals, anybody involved in third party reproduction.
We have this learning space. It's 175 a year. We have webinars once a month and then we have all kinds of materials and resources that professionals can use to give parents, to give donor conceived people when they reach out with questions. So we're making that learning space. We have it available now and it's on our website www.
donorconceivedcommunity. org forward slash professionals And we would love to welcome members here so we can help make the world a better place for donor conceived people.
[00:52:38] Griffin Jones: Melissa Lindsey, thank you very much for coming on the Inside Reproductive Health Podcast and sharing your thoughts on this topic.
[00:52:45] Melissa Lindsey: Thanks for having me. Pleasure to be here.
[00:52:47] Sponsor: We hoped you enjoyed this session with Melissa Lindsey, and now understand the benefits of known donation, the mission of Everie Egg Donation. To learn more about Everie head to www.everiedonation.com/for-clinics. That's www.everiedonation.com/for-clinics.
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