Transcript
Episode 2: How DNA Testing is Shaking Up the Sperm Banking Industry with Katie Lee Hornberger, CGC
KEY TOPICS
Introduction to the sperm banking industry [0:00 - 04:03]
Introduction to Katie Lee Hornberger, CGC [04:03 - 04:48]
How has genetic testing changed the sperm banking industry? [04:48 - 06:57]
What types of genetic or health conditions rule out a person's ability to be a donor? [06:58 - 00:10:15 ]
Do you test donors for CADASIL, for example? If you don’t, how do you explain to potential recipients that donors may have unknown genetic risks? [00:10:15 - 15:09]
How would you describe the culture of risk within the gamete donor community? [00:15:09 - 00:16:21]
Not allowing some groups of men to donate sperm could be viewed as discriminatory or eugenic, so why do sperm banks have these limitations in place and what they mean for families who are using sperm to form their families? [00:16:21 - 00:19:41]
Given our ever-changing understanding of people’s genetic risks, what do you see as the future of spermaking and sperm donation? [00:19:41 - 22:18 ]
Following the legal trend towards greater openness and transparency in sharing genetic and medical information with donor-conceived people, what does this mean practically for places like the Seattle Sperm Bank? [22:18 - 25:53]
What, if any, relationship do sperm bank recipients continue to have with the sperm bank after donation? [25:53 - 27:04]
Do sperm banks conduct a genetic screening on sperm bank recipients, ie, the women who use sperm donations to try to conceive? [27:05 - 27:57]
How does the sperm bank handle the situation when a donor-conceived child is later found to have a genetic condition? [27:58 - 30:25]
How are sibling limitations supposed to work? [30:26 - 32:44]
Wrap-up [ 32:55- 34:24]
Interview
[0:00 - 04:03]
Susanna Smith: Hi everyone. This is Genetic Frontiers. A podcast about the promise, power and perils of genetic information find us wherever podcasts are found and go to geneticfrontiers.org to join the conversation about how genetic discoveries are propelling new personalized medical treatments, but also posing ethical dilemmas and emotional quandaries. I'm your host, Susanna Smith.
On today’s episode, we will be talking about how the widespread availability of genetic testing has shaken up the world of sperm banks. The first sperm banks opened in the United States and Japan in 1964, but sperm banking remained a relatively niche industry until the late 1970s when successful in vitro fertilization methods were developed.
Today, around 100-150k women in the U.S. use sperm banks every year to try to grow their families. Most of these women are seeking to become single parents or are in same sex relationships.2, Women typically pay hundreds to thousands of dollars for each vial of sperm they purchase and are often advised to buy several vials at once while sperm donors are paid a small fee, typically less $100 per donation., Sperm banking is a lucrative and growing, global industry, estimated as nearly a $5 billion market today. 1
Historically, one of the the core tenets of the contractual relationship between sperm donors, prospective parents, and potential donor-conceived children is anonymity. Prospective parents might be offered a fact sheet about sperm donors through a sperm bank, listing their height or profession, alma mater, race or hobbies. They wouldn’t learn a donor’s name, phone number or address.
Or so everyone was told. Then direct-to-consumer genetic testing hit the market. And social media blew up.
Anonymity could no longer be guaranteed.
The latest estimates suggest that as many as one in five Americans—as many as 100 million people globally—have used a mail-in, genetic test kit. Even if a sperm donor hasn’t participated in genetic testing himself, donor-conceived people often can still trace themselves to their biological or genetic father through his relatives, who may have done the testing.
And many have.
Some people who were conceived through sperm donation are pushing for the right to learn more identifying information about their genetic parent. Several states—Colorado, California, and Washington—as well as a number of other countries have passed laws or regulations requiring that when donor-conceived people reach adulthood they are given access to identity information about their donor parent.6 There is a new trend towards open identity sperm donation although many people still use anonymous or de-identified donors.
But anonymous to whom and for how long, is the big question.
Countries like the UK, Australia, and Sweden have passed laws requiring donations be linked to a person’s identity6 and in those places, there was not significant drop in sperm donation. Surveys have shown that as many 30-50% of current sperm donors reports they would not donate again if their identity was not anonymized.6
In the United States, reputable sperm banks are regulated by the FDA. Those regulations come with limitations on who is allowed to donate sperm. Most sperm banks bar men from donating if they are over age 40, have had sex with a man in the last five years, are deaf, color blind, or have Type I diabetes or any number of other conditions., Many banks only want donors with degrees from four-year colleges. For many reasons, the donor pool in sperm banks does not reflect the racial and ethnic diversity of the general population. To get around some of the limitations and costs of using a sperm bank, some women and couples have asked friends to donate sperm or have turned to unregulated, informal Facebook groups to connect with men willing to serve as donors.5
[ 04:03 - 4:48]
To talk about this ever-changing world of sperm donation and how it's been affected by genetic testing, I’ve invited Katie Lee Hornberger on to the show today.
Katie is a board-certified and licensed genetic counselor, who works for the Seattle Sperm Bank. She is experienced in supporting people who are using assisted reproductive technologies to grow their families.. She is also a content creator with her own YouTube channel called Katie Lee, CGC Talks Genetic Counseling where she shares relevant and accurate information about genetics for people who are pregnant, trying to conceive, or undergoing fertility treatment as well as insights about the profession for people who are aspiring to become genetic counselors.
Welcome to Genetic Frontiers, Katie.
Katie Lee Hornberger: Thank you so much for having me today.
[00:04:48 - 06:57]
Susanna Smith: So let's start with the elephant in the room from your perspective, working on a sperm bank how has genetic testing changed the sperm banking industry?
Katie Lee Hornberger: There's really two different main ways I see things have really changed significantly with genetic testing. One, is what you alluded to in the introduction, which is the direct-to-consumer genetic testing that is widely available to any of us. It's a fact that decades ago parents who were using donors to conceive were told not to tell their kids that they were donor conceived because they assumed that their children would never find out. Things have changed so much with the ease to complete this genetic testing and find biological relatives. We are hearing the experiences of donor conceived people who are in their twenties, thirties, forties and how the experience impacted them. And as a professional who works in reproductive medicine, we're learning a lot from them about what we can do better. So that's one, the direct to consumer testing and how it's really shaped how sperm banking is going to grow and change and the lack of anonymity.
The other is the genetic testing that we utilize on all of the potential donors as part of their screening process. So when I was first a genetic counselor actually working for an egg bank almost ten years ago, we were only able to test donors for a couple of recessive genetic conditions as part of their screening process. Now we're screening all of our potential donors for 500 diseases, and that number is just going to keep growing and keep growing over the years.
And what this means for recipients or intended parents is that there is a lot of genetic information to review about every single donor. It can be a huge challenge because there's a lot to learn just when you're thinking about using a donor in general, let alone diving into a donor's genetic results and understanding what they mean and what they don't mean. I think a big change is that for more and more people searching for donors, whether egg or sperm donors, need to think about involving a medical professional who's trained in genetics to understand exactly what the genetic test results for the donor means, what the family history may mean for that donor in terms of medical risks for their children.
[6:58 - 00:10:15 ]
Susanna Smith: So that makes me think of this experience I had, which is when I was in graduate school. I lived in student housing, and all over the lounge areas there were these flyers tacked to bulletin boards, recruiting egg donors and offering a hefty payment for it.
I often did the math on how much of my tuition I could pay if I did a round of egg donations, which was significant. I didn't pursue it, but two years after I got out of grad school my mother was diagnosed with a rare, autosomal dominant, genetic condition, which I'm also at risk for. Had I donated my eggs while I was in graduate school, I'm guessing I probably would have passed the health screen with flying colors, only to later find out my genetic risks. So this is one of the questions I wanted to ask you, and I know you can't list all 500 conditions for which you screen sperm or potentially eggs are screened for, but what types of genetic or health conditions rule out a person's ability to be a donor.
Katie Lee Hornberger: This is a great question. We definitely are limited by the boundaries of our current knowledge. So your example is a great one. A lot of people who apply to donate sperm or eggs are really young so something may have not shown up in their family history that may in the future. One really important concept to understand is that these family histories: they are a snapshot in time. We want to keep updating them. We want to keep in touch with our donors, to get updates on their personal medical diagnoses and on their family history, so that anybody conceived with their donations has a complete and updated picture.
Now, as far as what disqualifies donors, there are quite a few different disqualifiers. I will say that there are guidelines that most gamete banks follow. They're set forth by the American Society of Reproductive Medicine. I'll also be honest that I do not agree with all of these guidelines, but as it stands now, most banks follow them. They're recognized as a standard of care when reviewing donors.
Some of the most common disqualifiers are psychiatric diagnoses. For example, the guidelines state that donors who have a diagnosis of schizophrenia or bipolar disorder or substance use disorder or major depressive disorder or a first degree relative with such should be disqualified or ineligible to donate.
Then beyond the psychiatric diagnoses, which are like, I said, a really common disqualifier, we also think about genetic diseases like dominant diseases or X-linked diseases. If there is a big increased risk that the donor themselves or the donor applicant could have an autosomal, dominant condition in their family, due to their family history, they're typically ineligible unless they would like to complete genetic testing, and they come to find out that they did not inherit it.
And then, beyond that, there are also multifactorial conditions. So if there's a condition that significantly impacts somebody's quality of life, maybe multiple sclerosis in a donor, for example, that could potentially be a disqualifier. Sometimes, evaluating these family histories, it can be very nuanced and kind of gray because I know I'm using these guidelines but I also have my own worldview on each diagnosis I come across. There's not essentially just a list of hundreds of conditions that we disqualify for. It's more taking into account age of onset severity, the rest of the family history beyond just the donor's diagnoses. So for most things it's a genetic counselor who's reviewing these diagnoses or the family tree in detail and using these guidelines to make determinations on eligibility for a potential donor.
[00:10:15 - 15:09]
Susanna Smith: So I just wanted to ask you directly, Katie, do sperm banks test for CADASIL, which is my mom's genetic condition that I am also at risk for. And if they don't, how do you explain to potential recipients that donors may have unknown genetic risks?
Katie Lee Hornberger: No, we do not routinely screen donor applicants for CADASIL. And in fact, I'd say it's a really common misconception when our recipients or individuals looking at profiles on Seattle Sperm Bank's website, or any bank's website, sees a big genetic panel on their donor for over 500 diseases, they think, “Oh, great! They've been screened for everything. This is fantastic.” But that is a total misconception. There are thousands and thousands of genetic diseases known to humankind, and we are screening for a very, very small subset with the goal of carrier screening being to look for recessive diseases that typically have an early age of onset and are very significant. So these are diseases where, depending on the results, if a sperm and egg source together or a reproductive couple are at an increased risk to have a child with a specific disease on that carrier screening, they might make a different reproductive decision whether that's using a different sperm or egg source or testing for the condition using testing on embryo samples. The goal of carrier screening is to inform them before conception of some of these risks for relatively common recessive diseases.
What that means is we are not testing for depression, for autism, for adult onset cancer, for vision loss, for dominant diseases, diseases like dementias or Parkinson's or CADASIL. There are so many things we can't test for. And while I wish, well, I kind of wish it would be very, it would be a lot of work to screen each donor, but it would be fantastic if there was a way that any of us could just be tested for everything and understand what our risk was for each of these thousands of diseases. It is not feasible or possible today in 2024.
So recipients are limited by the information we have, which is really their carrier screening results, and the three-generation family history. Those are our best two clues to try and piece together what risks there might be, if any, for children of a donor.
I try to explain to the recipients I speak with that we are limited. And most people get it. Once they talk with me, it's a big misconception that's out there that we can screen for more than we really can. And there are truly a lot of limitations to genetic testing that's available today, even though it's come so far in the past couple of decades.
Susanna Smith: I think that's such an important point when we've made another episodes, which is that we are just at the tip of the iceberg of what can be known about genetics and genomics generally, right, in sperm banks or any other setting in which you might be tested. And more is being learned every day. And I think that's you know what a lot of what we're trying to talk about on the podcast is sort of what are the implications of this exploding science. So yeah, I think there are limitations in every venue you're looking to for genetic testing.
Katie Lee Hornberger: And one thing is the more we can test for the more we find, right? When we went from testing donors for two or three genetic diseases to testing for 500 diseases we went from very rarely, maybe one out of 30 donors are found to be a carrier of something to now nine out of 10 donors are found to be a carrier of something on our carrier screen.
When we were testing for just a couple of conditions, we would eliminate donor applicants who are a carrier. Now, we cannot do that. We would have essentially very few, if any, donors, if we started eliminating carriers. So we really have to reevaluate our screening donors and eligibility criteria for donors. As the genetic testing results get more complicated and we can look for more and find more.
Susanna Smith: Yeah, I think that's an interesting point because sort of outside of the sperm banking industry when you're doing prenatal counseling or preconception counseling potentially it only becomes an issue of both reproductive partners have the same condition. So it's an interesting thing that you chose to eliminate people who have any risks. But really it could be for certain donor recipients they're fine because they don't share the same risk.
Katie Lee Hornberger: Yeah, I mean, back in the early-to-mid 2000s, I think that idea was oh, if we know that a donor is a carrier of something that's too much, that's too much risk. And maybe it was because it was not, carrier screening was not as accessible to all recipients the way it is today,. Not as many people were having carrier screening done that eliminating them was kind of just, it was just commonplace. And then once we started doing bigger and bigger panels for carrier screening it was just no longer possible, because, of course, so many people are carriers. Most carriers have absolutely no health issues or symptoms despite being a carrier of a recessive condition.
[00:15:09 - 16:21]
Susanna Smith: How would you describe the culture of risk, or how risk is understood, and risk tolerance within the donor recipient community, because there seems to be this sort of mentality that you're purchasing a partner who has been vetted and therefore should be ideal.
Katie Lee Hornberger: It can definitely feel that way from my perspective when I speak with some recipients that they want somebody who is as healthy as possible because they want to eliminate risk for their future children. I think that's another misconception we can’t just, we can never eliminate risk. We all want our children to live the most healthy, long life they can but there is just no way to eliminate risk even with all this testing.
So a lot of it is just explaining the benefits of the testing we've done and how it reduces risk but also the simple truth that we are never eliminating risk. And, in fact, even if we could eliminate genetic risk. There are many health conditions that are, they're not genetic. That's a big part of the counseling I do, is helping people understand the limitations to the testing and screening that's been done on any donor.
[00:16:21 - 00:19:41]
Susanna Smith: So when I was researching this episode, it seemed like by some estimates only 5% of prospective donors are accepted to donate who fill out the paperwork but once they're in the bank, there's any number of reasons why a woman or a couple might choose one donor over another like shared interest, ethnicity background.
But there are also reasons people cannot use to vet potential donors. So a gay couple, for example, cannot choose a gay sperm donor through the sperm bank and a deaf couple cannot select a deaf sperm donor, even though that might be their preference. So, not allowing some groups of men to donate sperm could be viewed as discriminatory or eugenic. But can you talk about why sperm banks have these limitations in place, noting that you may not agree with all of them and what they mean for families who are using sperm to form their families.
Katie Lee Hornberger: Yes. This is a topic I think about every single day because a part of my job every day is reviewing donor applicants. Sometimes I am disqualifying donor applicants that I think would make great donors, maybe not for everyone, but certainly for certain families or individuals who are wanting to build their family. To speak for myself, I really believe that intended parents should be able to select any donor assuming they're fully informed of any known health risks or limitations that there might be to the family history.
But you are asking why banks have these limitations. And I think it's primarily just this idea of paternalism that we see throughout medicine, throughout history. I think that in gamete banks and reproductive medicine you can still see this paternalistic influence. I often hear, from doctors or from customers at our sperm bank that I'm speaking with, that they think any donor available on our website has been screened to the highest standard, and they are paragons of health. And when I first started in this field I kind of felt similarly. I felt like it was, in a way, my responsibility to uphold this very high standard of having the healthiest, the best donors, and as if it was kind of my role to protect intended parents from having or choosing a donor who would have an increased chance to have a child with certain conditions.
Now I've really changed how I view things. I think it's clear to me that we care more and more in medicine about patients having autonomy, about them making decisions for themselves. I no longer view my role as protecting or limiting. I think it's more about educating, about facilitating decision making, about being transparent, about the information we do have. Sperm banks are just beginning to change and kind of the industry is just starting to change. I think eventually it's gonna come to a place where there's more power in the hands of the people who are selecting a donor and less power from the professionals who are reviewing the donors or providing assisted reproductive technology treatment. But it's still, it's really still just beginning to change. My goal going forward in the future, and kind of still presently, is just to make sure recipients of donation have as much information as they would like on their donor, and they understand the limitations.
[19:41 - 22:18]
Susanna Smith: So I just want to pick up on one thing you said about sperm donors being vetted to be paragons of health. And I think that's such an interesting way to put it, and I think it also speaks to a moment in history and medical history when we viewed genetic testing as sort of a way of vetting people as being healthy and potentially therefore allowed to reproduce through sperm banks. And I think what we're finding out more and more with genetic testing and genomic sequencing is that everyone has genetic risks for disease. And we don't know enough to understand everybody's risks yet but that's probably true of all of us the more we learn. So given that, what do you see as the future of spermaking and sperm donation?
Katie Lee Hornberger: Absolutely. That's a great point. And I'm counseling and talking about it all of the time, the limitations to the genetic testing. Even though we're testing more than ever before, we are still very limited in what we know about someone's future health or about children of a donor's health. I think where things are going is just towards more openness in multiple areas. I think that's the trend. So I wanna see more openness in terms of when recipients can find out the identity of their donor, or when donor-conceived people can find out their identity. It's moved from completely anonymous donors to many banks like Seattle Sperm Bank offering open ID at eighteen.
But I'd love to see more openness like openness from birth donors available to recipients and then, I think, openness around medical information. This is a huge question and concern from donor-conceived people who are in their twenties, thirties, and beyond, of people wanting to know what is the current medical history from their donor. And similarly, for donors, the medical history of their donor-conceived people or their donor-conceived children could be important, too. I'd love to see more transparency around that in an easier way, for donors and donor-conceived people or parents of donor conceived-people when they're under 18 to be able to connect and share medical history medical diagnoses in a comfortable way for each of them, so that everybody has as complete of a picture of their medical history as possible.
And then I think, finally, on that theme of openness is more transparency about family limits. I think it would be great if every donor bank or every donor, it was very clear to anybody who wanted the information how many donor-conceived half siblings are out there so that everyone knows exactly what their family size is and just has access to that information.
[22:18 - 25:53]
Susanna Smith: Yeah, so those are all rich topics. And I wanna dig into them one by one. So let's start with the openness topic. So two years ago, in 2022, Colorado, where you and I both live, became the first state to pass a law giving donor-conceived people the right, when they turn 18, to learn their donor's identity. And I believe they can learn their donor's medical history before then. This is very much a trend legally, that states and countries have passed these laws, allowing donor-conceived people more rights to information about their genetic parent. Can you talk a little bit about what these types of laws mean in practical terms for places like Seattle Sperm Bank?
Katie Lee Hornberger: For donor applicants at Seattle Sperm Bank, part of the application process involves talking to a licensed mental health professional and a lot of that conversation is essentially informed consent. It's helping potential donors think about what will it look like when, in 18 years or more, people start reaching out to me? What will that feel like to me? Maybe that donor applicant doesn't have a partner right then. But what would it be like if they have a partner in the future. Or maybe they have kids of their own to tell their family to tell their partner to tell their kids about their decision to donate, and why they did it. Is that something they think they would be comfortable with?
So I think a big piece is the change in mindset for donors just to recognize and think about these things in advance, where when sperm and egg donors were anonymous or assumed to be anonymous, I'll say that wasn't as much of the conversation and the process of gearing up to apply to become a donor.
The medical history is a big piece. So at Seattle Sperm Bank, when you shop or look for vials from a donor, you can download the medical history. It's a three-generation family history from the donor, and that's a great starting place. But it really is just a snapshot at that moment of time. So for donors what's really important for them to understand, and something I try to counsel them on is, this is the only family history that your donor-conceived children will have from you. It is so essential and so important that you update us at Seattle Sperm Bank, update us to let us know if there are changes to your health or your family members’ health so we can assess, investigate, maybe help coordinate genetic testing or visits with some sort of medical specialist, if needed. Because we want donor-conceived people and their parents, if those donor-conceived people are under 18, to have an updated medical history. We really want donors to recognize that this is just not a one-stop shop family history. We need to keep it updated for a lot of banks. What that means is sending out requests for updates on an annual basis even after the donors have retired from donating so we can keep their contact information up-to-date, which is really important, for when donor-conceived people out to their donor when they reach 18, and so that we can reach out to the donor. If we happen to hear from a parent of a donor conceived-child, whose child has been diagnosed with a birth defect or a genetic condition, in those cases we want to proactively reach out to the donor to collect more information, perhaps request genetic testing. So I think this is a change. I hope to see similar legislation pass in other states. I think this change really means donors kind of rethinking what it means and understanding that they will have continual contact with the bank even after they're done donating.
Susanna Smith: Yeah, I think that's really interesting and also potentially, publicly, not a well understood relationship. It's not you go in and donate sperm and leave and never think about it again. It's an on-going relationship.
[25:53 - 27:04]
Susanna Smith: And I've been curious about this piece for donor recipients and donor-conceived people. What if any relationship do they continue to have with the sperm bank for recipients of donation?
Katie Lee Hornberger: We ask that they report any pregnancies or births they have, and this is really important because it helps us track how many families, how many donor-conceived people are resulting from each of our donors so we can stick with the family limits we've set in place. We ask for those reports from recipients. And we also love when our recipients contact us, if they have any questions or concerns, or any new medical diagnoses in their children because oftentimes that starts an investigation of sorts, if we learn that there's new information about a child from one of our donors.
We want to contact that donor and look into it and see if there could be a paternally inherited factor or some sort of predisposition from the donor side of the family so that we can contact other recipients. So really, the take home here is we would love for everyone to keep their contact information up to date recipients, donor-conceived people when they reach adulthood if they want to contact the bank, knowing how to reach us and keeping their contact information updated, and donors as well to make sure we can always get in touch.
[27:05 - 27:57]
Susanna Smith: So given that people who use sperm donation then have to report any health concerns they have with their kids that could be genetic to the sperm bank. Do you also do an extensive genetic screening of sperm recipients, the women who use sperm donations?
Katie Lee Hornberger: We don't. We don't require it. So depending on how somebody is trying to conceive using a sperm donor, you know maybe they're conceiving at home on their own. Maybe they're conceiving with an ob/gyn or a reproductive endocrinologist, utilizing something like IVF, something with higher intervention, they likely would be recommended to do carrier screening of their own. And you and I both know every time you go to the doctor you fill out, you almost always fill out, your family history. Whether or not anybody looks at that might depend on the doctor in the office you're being seen in.
But recipients, they're not required by us, and typically not required by their doctor, who's treating them for fertility to undergo genetic testing. It's generally considered an optional test, and it might be suggested or recommended. But usually you can opt out of it.
[27:58 - 30:25]
Susanna Smith: So I'm curious then if a child, who is a donor-conceived person, comes back with a genetic condition do you screen first to make sure it wasn't on the maternal side?
Katie Lee Hornberger: It all depends on the specific genetic condition and what other evidence we have. So we always begin with what's known about the child who's been diagnosed, the inheritance pattern of the condition, maybe the age of onset, and whether it's possible that the egg source or the sperm source could be living and asymptomatic, and not have any family history or personal diagnoses.
But oftentimes, yes, where it goes is once a child has a genetic diagnosis then maybe both the sperm and the egg source are screened at the same time, maybe one first depending on if there's more evidence that one might be more likely to carry that genetic change.
But it does often start an investigation. And one of the challenging things about these investigations is they can drag on for months. Because getting a diagnosis for the child sometimes can take a long time and then getting the genetic test results back could take two or three months and then coordinating testing on the sperm or egg source can also take another few months. So it can take a long time to get down to the bottom of it. But the goal is to understand: does the sperm donor have an increased chance for themselves to develop the condition, and is there anything they should be doing? And is there an increased chance for half siblings or other donor-conceived kids of the affected individual to develop that condition.
Susanna Smith: And then what happens from there? Is there sperm removed from the bank potentially, and are all half siblings notified if it seems to be something
genetically relevant for them.
Katie Lee Hornberger: Yeah, that's the goal. So we would notify everyone with what we call a medical update letter. But essentially an update of: here's what we found, here's what it means for you and for your children, and here would be follow-up, suggested next steps. And typically we also send along a de-identified copy of the genetic test results if the donor was confirmed to have a genetic change that puts them at an increased risk. We ask them to follow up with their child's pediatrician and kind of go from there.
We unfortunately can't get too involved in the care of donor-conceived people since I work remotely as a genetic counselor. Those children need to be evaluated in person by somebody with, you know, a pediatric specialty, who can see them face-to-face and talk to their parents, so we hand it off from there, but remain available for support. Sometimes, as more days or months go on, we get more information from other families. So we're always reevaluating any medical information we have on a donor, including medical updates from their donor-conceived people.
Susanna Smith: Thanks for sharing that.
[30:26 - 32:54]
Susanna Smith: So I wanna talk a little bit about sibling limitations. This is one of the topics that comes up in the news all the time. These articles about so and so has 200 half siblings, sperm donors donating again and again without being tracked, or perhaps not being honest with the sperm bank. So how is this supposed to work currently in the United States? What do sibling limitations actually look like?
Katie Lee Hornberger: This is a good question and a hard question especially because some of the state laws are also restricting family limits. What it's supposed to look like might depend where you look. So there are guidelines from ASRM (American Society for Reproductive Medicine). The guidelines are a little bit outdated because they limit you to a geographical region, of how many donor-conceived people should be in one region. But now that it's quite easy to ship sperm and eggs across the country in the world that doesn't make so much sense anymore. And I think what most donor-conceived people advocate for is a small family limit, things smaller than those stories you hear on the news. So for most banks they usually have this tracking mechanism, which is what we utilize at Seattle Sperm Bank, where we're always keeping track of how many births have been reported for any of our given donors. One of the limitations we run into is, some people may choose not to report their birth, maybe because of concerns about privacy. So if you have any concerns like that as a recipient, I always encourage you to get in touch with the bank and understand exactly what is being asked of you to report. For example, it's not as if we require the name of the child who's been conceived or any specific details or records. We really just want to know whether a birth was achieved. So we can mark that as a family who's used that donor.
A model that I think could be useful is how some other countries have tracked families. There are systems that are countrywide used to truly limit the number of families that a donor goes out to from the get go. So I think there is definitely room for improvement on family limits. I'm not sure exactly how it's going to evolve, but I would like to see family limits that most donor-conceived people would be comfortable with.
Susanna Smith: I think those are all great points. Katie, looking to other models out there for family limits, and also considering the needs of families who are raising donor-conceived children, or who are donor-conceived people, and what they gonna be most comfortable with in terms of family limits.
[ 32:55- 34:24]
Susanna Smith: Thanks, Katie, for joining me today on Genetic Frontiers for anyone listening who would like to learn more about Katie's work, go to: https://www.katieleecgc.com/ or follow her Youtube channel, Katie Lee, CGC, which is linked to in our show notes.
Genetic Frontiers is co-produced by Brandy Mello and by me: Susanna Smith. Music is by Edward Giordano and design by Abhinav Chauhan and Julie Weinstein. Thank you for listening to this episode of Genetic Frontiers connect with us at geneticfrontiers.org or on Instagram and Linkedin at Genetic Frontiers, to continue the conversation. If you enjoyed this episode and would like to support our independent production. Please make a donation to Genetic Frontiers through our Patreon account.