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Jamie Spiers has 37 biological siblings. At least, that’s how many she knows about. When her mom, a lesbian single mother by choice, conceived her using a sperm donor, the bank said only five other families had used the same donor and that she had purchased the rest of his supply. Spiers now knows this was a lie. She ultimately learned that the donor had produced approximately 1700 vials of sperm, which is why she suspects there are more half-siblings out there.
Stories like this are far from exceptional. In fact, in the donor-conceived community, they are increasingly becoming the norm. The rise of DNA testing and social media has allowed parents, children, and donors to begin connecting dots that were previously inaccessible, unmasking an unscrupulous, profit-centered industry wrought with ethical issues.
Commercial sperm banks in the U.S. have operated under the radar for decades with virtually no federal laws restraining them – nothing limiting how many children can be born from a single donor, no regulations on accurate record-keeping of live births, and no mandated procedures for informing families of critical medical updates about donors or donor siblings.
Experts who spoke with LGBTQ Nation described an overall culture of lies and manipulation in an industry that has exploded into a $5.5 billion global behemoth that pays little mind to the mental and physical health of the families it helps create.
But change may be coming.
A growing coalition of donors, donor-conceived people, and recipient parents (many of whom are LGBTQ+) are fighting for stricter regulations and greater transparency. They’re forming nonprofits, launching new companies, and creating viral social media accounts. And according to these changemakers, their tidal wave of dissent will soon loom too large to be ignored.
But reporting is completely optional, and only about 20% to 40% of people do it. The major banks typically leave the onus on the recipient parents and have no follow-up protocol in place. “It’s one of the most evil genius moves they do,” said activist TikToker and donor-conceived person Laura High. “It’s genuinely brilliant, and it’s awful.”
Fairfax Cryobank, for example, says on its website that they “rely on our clients to be diligent in reporting pregnancies and births.” In the same article – somehow meant to dissuade fears that a child will have a hundred half-siblings – it says: “In the United States, Fairfax Cryobank has a family unit limit of 25, meaning that distribution of a donor will stop when we know that 25 families have had children using that donor.” Even if every single family did report, this limit could still result in dozens of kids.
What’s more, when major U.S. sperm banks reach whatever they loosely define as their limit, they often sell leftover vials abroad to help families around the world conceive children, making the U.S. one of the world’s largest exporters of sperm.
American sperm is coveted due to a number of factors. Many Western nations, including most of Europe, have outlawed anonymous donation, which has caused a shortage of willing donors, a 2018 report in the Guardian explained. Many also have more stringent family limits. Some countries, like Canada, Australia, and the UK, also forbid payment for sperm and require donors to give purely out of kindness, which has resulted in fewer donors.
Some nations still won’t allow banks to serve single moms and lesbians, so many of them turn to the United States. American banks also reportedly have more advanced testing and screening processes in place (though the actual laws around testing are very lax). All of this, plus America’s large population, means American banks have a much larger supply than other countries.
As such, a single U.S. donor – who may not have understood the difference between a U.S. limit and a global limit – could have dozens (or even hundreds) of biological children around the world. But most will never know for sure because banks largely do not keep track.
And for the most part, none of this is against the law.
Ole Schou, founder and CEO of Cryos International, a global bank with a U.S. presence, told LGBTQ Nation he’d like to keep it that way.
“No, we do not believe that a law should be made to mandate a family limit for sperm donors in the US,” he said in a statement, adding that “most Cryos donors in the US are not connected to more than 25 families.”
Schou said stricter family limits would increase demand, which would result in increased prices and push more people to find grey market donors.
He said Cryos adheres to a non-binding recommendation from the American Society for Reproductive Medicine (ASRM) meant to reduce the risk of accidental incest. It states that a single donor should be limited to 25 births per population of 800,000. Donor-conceived community advocates have criticized this guideline, which, if you do the math, deems it acceptable for 10,000 children to be born in the United States from a single donor.
Schou called the ASRM guidelines “one of the best in the world” and said “increasing bureaucracy makes it more difficult to have a sperm bank operating in several countries.”
ASRM’s guidelines may statistically minimize the risk of incest, but they fail to take into account other effects on the donor, the children, and their parents.
Former donor Dylan Stone-Miller has been publicly sharing his journey of discovering 97 biological children (so far) conceived using sperm he donated as a college student to support himself. He speaks regularly on Instagram about how the bank where he donated, Xytex, told him no more than 40 kids would be born using his sperm and that any leftover vials would be used for research.
Stone-Miller said the families he has found are “the most beautiful thing that’s ever happened” to him, but that the large number makes it impossible for him to play the role the kids want him to play in their lives.
“I’m furious with the sperm bank because they robbed me and the kids of close relationships,” he told his followers.
Wendy Kramer, who runs the Donor Sibling Registry (DSR) – a database donor-conceived people use to find their genetic relatives – told LGBTQ Nation that the biggest donor sibling cohort on the site has 250 people, but that there are many with more than a hundred.
The large numbers pose several risks, including accidental incest, widespread cases of rare genetic conditions, and mental health challenges for those involved.
Stone-Miller – who founded the nonprofit DCP Data to help connect donor-conceived people – described it on Instagram as “existentially exhausting” for the kids to never really know how many genetic siblings they have.
In testimonials on the DSR, one donor-conceived person said they struggle with “feeling like a commodity” and with being rejected by their donor’s immediate biological family members who “are horrified and quite unable to cope with the idea of hundreds of siblings.”
A recipient parent wrote their child struggles with “feeling like a clone” and is “completely overwhelmed by the enormity of the situation,” including the fact that they’ll never be able to build meaningful relationships with all of their biological relatives.
“My 10 yo has told me she’ll look for all of her siblings (100+) until she dies,” the parent wrote. “This is a terrible burden for her to carry.”
But without any regulations with which to comply, the banks have no incentive to change. They do, however, have one big incentive not to.
“Whenever you ask, why is it the way it is or why don’t they do this, it’s always the same answer,” Kramer said. “One word: money. It costs money to have accurate record-keeping. It would cost money to actually limit the number of kids because then you wouldn’t just sell, sell, sell.”
Sperm banks do not make their profit margins widely available, but the global market is estimated to be worth more than $5 billion. In the U.S., vials routinely cost between $500 and $2000 (sperm donors only make about $100 per donation, which can then be split into multiple vials). Sperm banks also often charge hundreds of dollars extra for more information on donors, such as voice recordings and essays.
“This is hard, heavy money,” High said. “They don’t want to lose that third yacht.”
High alleged that one of the worst lies the banks employ is that all the medical information a family will ever need is in the donor profile on the website. She accused the major banks of “actively lying to recipient parents about how genetic testing works, how much genetic testing they’re actually doing, and how a medical history works.”
“To me, it’s taking advantage of marginalized communities and traumatized communities,” she said, explaining that the testing is often not as extensive as it seems and that the college students they often recruit may not actually know their entire family’s history.
“The cryobanks aren’t calling the donor’s mom to verify… They’re literally going to college campuses to recruit super young adults, promising them you can pay for your spring break… It’s outrageous.”
Many sperm banks do indeed target students from prominent schools. California Cryobank’s website, for example, states that the majority of its donors “are recruited from world-class universities, including UCLA, USC, Stanford University, Harvard University and MIT.” The bank says it uses university publications, internet advertising, and information seminars to recruit, with donor age requirements being 19 to 39.
A 2020 article in the Harvard Crimson mentioned California Cryobank’s Cambridge location being “conveniently located between Harvard and MIT.”
Marketing toward these students is often focused exclusively on money (and can be oddly sexually suggestive) without acknowledging the long-term consequences of donating.
One such student donation led to the conception of Steven Gunner, who died in 2020 at age 27 from an opioid overdose after years of struggle with addiction and schizophrenia. After his death, Steven’s parents discovered that his donor had also recently died from an overdose after battling the same mental illness.
It is difficult to test DNA for schizophrenia risk, but it turned out that when he donated as a college student, the donor had already been hospitalized for behavioral issues, which he did not disclose on his medical questionnaire. Banks, however, rely largely on the honor system and do not typically verify medical histories.
The Gunners have since advocated for legislation to change that, acknowledging the contradiction that a law may have stopped their beloved son from ever being born. But his mom told the Wall Street Journal that it also would have prevented his years of anguish.
High – who has been outspoken about enduring her own medical issues without access to half of her genetic history – pointed out that had Gunner’s parents at least been informed of the donor’s schizophrenia diagnosis after their son was born, they could have known what signs to watch for in their son and gotten him help earlier. Banks claim to inform recipient parents of relevant medical updates about donors but advocates like High allege they rarely do.
High is the self-proclaimed “donor-conceived person of TikTok.” She became an expert on sperm donation after discovering her parents were told the wrong ethnicity of her donor, that she had no idea how many donor siblings she had, and that once her donor refused contact with her, she had no way to obtain critical medical information.
She began talking about her experience on TikTok, and her account quickly spiraled. Now, she shares her intimate knowledge of the industry with her 682,000 followers.
High says much of the medical information on the donor profile is “useless.” She said she’s heard too many horror stories about kids with illnesses that were missed for too long because doctors didn’t know to test for them.
“I’ve been on the phone with too many recipient parents in tears… I absolutely think everyone should have access to their genetic identity. That’s a human right… But number one is just health and safety.”
One parent on the DSR wrote about a donor with 99 known genetic children who has a rare genetic disease called neurofibromatosis that typically affects about one in 2,500 people. The parent alleged the sperm bank waited six months after the first child was diagnosed to alert the clinics where the sperm was delivered and added that “there are reasons to believe the sperm donor wasn’t properly screened.” They said at least 19 kids have been diagnosed with the illness.
Stories like this are plentiful.
Spiers’ experience of discovering her 37 siblings inspired her to dedicate her life to advocating for industry reform. She currently serves as vice president of stakeholder engagement for the U.S. Donor Conceived Council (USDCC), which advocates for laws and policies that prioritize the best interests of donor-conceived people.
Established in 2021, the organization believes in stricter family limits, as well as outlawing anonymous donation (which barely exists anymore anyway), with the idea that donor-conceived people have a right to know their genetic roots for both medical and personal reasons.
Spiers was clear: “It’s not just about passing any regulation; it’s about passing the right regulation.” This means making sure any change keeps families protected. USDCC works closely with lawmakers, LGBTQ+ organizations, and the Uniform Law Commission – a bipartisan group of experts that created the Uniform Parentage Act as a model for state parentage laws – to ensure the policies it advocates for do not jeopardize the legal rights parents have over their children.
Parentage laws are especially important for LGBTQ+ people, who often utilize donors and must take extra steps to ensure legal rights over their kids.
In 2022, USDCC was involved in the landmark passage of Colorado’s Donor-Conceived Persons and Families of Donor-Conceived Persons Protection Act, hailed as the first U.S. law protecting the rights of donor-conceived people.
Set to take effect this year, it gives donor-conceived people the right to identifying information about their donor when they turn 18 and creates an enforceable 25-family limit per donor. It requires fertility clinics and gamete banks to check in with donors for medical updates and make them available to the necessary parties. It also mandates that donors and parents receive educational materials on the interests of donor-conceived people.
It is telling in and of itself that these seemingly bare minimum requirements are hailed as historic.
But for some people, ID disclosure at 18 is far from good enough.
In 2020, Danielle Winston and her wife, Paige Kennedy-Winston, founded Seed Scout, a concierge sperm donor matchmaking service that promotes contact with the donor from birth, requires a three-family limit, and is stringent about medical updates.
Winston told LGBTQ Nation that more than 80 percent of the families they work with are LGBTQ+ and that most of their highly-vetted donors are gay men. “A lot of people really find it heartwarming. It’s part of our own community, and those people really get it.”
Winston – who also used a known donor to conceive her son – said some clients are hesitant about the model at first, but once they meet their donor, the worries disappear.
“The friendships between clients and donors, the way that people call us or message us on Slack after they’ve met the donor. They’re like, ‘I never thought I could find a donor like this.’”
For each family, it’s a build-your-own adventure. Some merely check in with their donors once a year for health updates, while others build strong friendships where the donor becomes part of the child’s life. But the most comforting part for everyone, Winston said, is that when the kids start asking questions, they’ll have the answers.
Winston hopes Seed Scout will be part of a culture shift in the industry, which was built on shame and secrecy from the start.
For almost a century, artificial insemination was used exclusively for heterosexual couples experiencing male infertility, which was (and still is) highly stigmatized. Poor record-keeping was purposeful to maintain anonymity. Parents were advised to conceal the use of a donor from their children and more or less pretend it never happened.
The first recorded artificial insemination was done without even the recipient parents knowing. In 1884, Dr. William Pancoast inseminated a woman under anesthesia using a medical student’s sperm. It led to a baby. Years later, the doctor told the husband what he’d done, but neither ever told the wife.
By the time sperm donation became more popular in the 1980s, that culture of secrecy had permeated every nook and cranny of the industry.
But Winston emphasized that parents need not feel threatened by known donors, that they are often far more concerned with ensuring they have no obligation to support the kids than they are with becoming significant figures in their lives.
“It takes a village to create love for a kid,” she said, “to give them the strength mentally and to have them go on and be the best version of themselves. That’s the way I view it.”
Kramer agreed.
“Donors don’t want to be a parent to the kids. Parents don’t want money. There’s no reason why adults cannot be empowered to do the best thing for their kids… So many parents are in this fear-based place of keeping the donor out because they feel somehow threatened… When properly counseled and educated, all those fears just dissipate because they’re based on false assumptions.”
“We have so many adult donor-conceived people who come to the DSR and then say to their parents, ‘I could have grown up knowing my half-siblings. Why didn’t you let me?’”
Despite the complexity associated with large numbers of donor siblings, Kramer said the connections made through the DSR are “overwhelmingly positive.”
“Before we came along, people didn’t understand that they had the right to be curious,” Kramer said. “We circumvent the industry and put the power back in the family’s hands.”
Kramer’s work has changed thousands of lives, but she laments that it’s necessary. “This really shouldn’t be my job. I’m just the mom of a donor kid. The reason I’m doing it is because the industry won’t do it.”
Work like Kramer’s has fueled some change, as several banks now have their own optional sibling registries. Acknowledging the challenges of anonymity today, some have also shifted to exclusively working with donors who are willing to disclose their identity to offspring when they turn 18.
Apart from following each country’s laws, Cryos International’s Nielsen said he does not believe it is Cryos International’s place to determine which type of donor (anonymous or open ID) is “more ‘right.’”
“There are many different and legitimate reasons why future parents would choose either type of donor… As long as there is a demand for both types of donors, Cryos will offer them. And we will provide our best possible advice for future parents on which type of donor to choose as well as solid information for our donors about the implications of their choices.”
“This is an avalanche right now,” she said. “The amount of stories that are coming out at such a high rate… We are in the avalanche.”
“The donor-conceived community and recipient parents are talking. Donors are talking. We are now all comparing notes and realizing, oh sh*t, we were lied to… Something that should be so carefully and thoughtfully put out into this world was literally handled like a ham sandwich in a plastic bag.”
High called herself “annoyingly positive” and said she has “full faith” that the industry will improve. Sperm banks will never choose to do so on their own, she guessed (as did every other source who spoke with LGBTQ Nation), but those fighting for change will ultimately force their hand.
She predicts that within 20 years, the U.S. will mandate donor identity disclosure when a child turns 18. She also believes there will someday be a national family limit, as well as better counseling and more education. She thinks more people will become infertility trauma-informed, more banks will train staff in LGBTQ+ issues, and that eventually, there will be some sort of standardized educational packet fertility clinics provide to prospective parents about raising a donor-conceived child.
“This cannot be a profit-centered industry,” she said. “It must be family and child-centered.”
“I don’t know what the best system is, but I do think that it is going to be a little bit more official. Let’s join the rest of the countries. Everyone else has got their ass a gear with this. Let’s move it along.”
Jamie Spiers has 37 biological siblings. At least, that’s how many she knows about. When her mom, a lesbian single mother by choice, conceived her using a sperm donor, the bank said only five other families had used the same donor and that she had purchased the rest of his supply. Spiers now knows this was a lie. She ultimately learned that the donor had produced approximately 1700 vials of sperm, which is why she suspects there are more half-siblings out there.
Stories like this are far from exceptional. In fact, in the donor-conceived community, they are increasingly becoming the norm. The rise of DNA testing and social media has allowed parents, children, and donors to begin connecting dots that were previously inaccessible, unmasking an unscrupulous, profit-centered industry wrought with ethical issues.
Commercial sperm banks in the U.S. have operated under the radar for decades with virtually no federal laws restraining them – nothing limiting how many children can be born from a single donor, no regulations on accurate record-keeping of live births, and no mandated procedures for informing families of critical medical updates about donors or donor siblings.
Experts who spoke with LGBTQ Nation described an overall culture of lies and manipulation in an industry that has exploded into a $5.5 billion global behemoth that pays little mind to the mental and physical health of the families it helps create.
But change may be coming.
A growing coalition of donors, donor-conceived people, and recipient parents (many of whom are LGBTQ+) are fighting for stricter regulations and greater transparency. They’re forming nonprofits, launching new companies, and creating viral social media accounts. And according to these changemakers, their tidal wave of dissent will soon loom too large to be ignored.
Modern families
While there’s no U.S. law limiting the number of families that can form from a single donor, many sperm banks set their own family limit at somewhere around 25. It’s an already massive number made even larger by what’s hidden in the fine print: Most banks only remove a donor from their marketplace once 25 families have reported births.But reporting is completely optional, and only about 20% to 40% of people do it. The major banks typically leave the onus on the recipient parents and have no follow-up protocol in place. “It’s one of the most evil genius moves they do,” said activist TikToker and donor-conceived person Laura High. “It’s genuinely brilliant, and it’s awful.”
Fairfax Cryobank, for example, says on its website that they “rely on our clients to be diligent in reporting pregnancies and births.” In the same article – somehow meant to dissuade fears that a child will have a hundred half-siblings – it says: “In the United States, Fairfax Cryobank has a family unit limit of 25, meaning that distribution of a donor will stop when we know that 25 families have had children using that donor.” Even if every single family did report, this limit could still result in dozens of kids.
What’s more, when major U.S. sperm banks reach whatever they loosely define as their limit, they often sell leftover vials abroad to help families around the world conceive children, making the U.S. one of the world’s largest exporters of sperm.
American sperm is coveted due to a number of factors. Many Western nations, including most of Europe, have outlawed anonymous donation, which has caused a shortage of willing donors, a 2018 report in the Guardian explained. Many also have more stringent family limits. Some countries, like Canada, Australia, and the UK, also forbid payment for sperm and require donors to give purely out of kindness, which has resulted in fewer donors.
Some nations still won’t allow banks to serve single moms and lesbians, so many of them turn to the United States. American banks also reportedly have more advanced testing and screening processes in place (though the actual laws around testing are very lax). All of this, plus America’s large population, means American banks have a much larger supply than other countries.
As such, a single U.S. donor – who may not have understood the difference between a U.S. limit and a global limit – could have dozens (or even hundreds) of biological children around the world. But most will never know for sure because banks largely do not keep track.
And for the most part, none of this is against the law.
Ole Schou, founder and CEO of Cryos International, a global bank with a U.S. presence, told LGBTQ Nation he’d like to keep it that way.
“No, we do not believe that a law should be made to mandate a family limit for sperm donors in the US,” he said in a statement, adding that “most Cryos donors in the US are not connected to more than 25 families.”
Schou said stricter family limits would increase demand, which would result in increased prices and push more people to find grey market donors.
He said Cryos adheres to a non-binding recommendation from the American Society for Reproductive Medicine (ASRM) meant to reduce the risk of accidental incest. It states that a single donor should be limited to 25 births per population of 800,000. Donor-conceived community advocates have criticized this guideline, which, if you do the math, deems it acceptable for 10,000 children to be born in the United States from a single donor.
Schou called the ASRM guidelines “one of the best in the world” and said “increasing bureaucracy makes it more difficult to have a sperm bank operating in several countries.”
ASRM’s guidelines may statistically minimize the risk of incest, but they fail to take into account other effects on the donor, the children, and their parents.
Former donor Dylan Stone-Miller has been publicly sharing his journey of discovering 97 biological children (so far) conceived using sperm he donated as a college student to support himself. He speaks regularly on Instagram about how the bank where he donated, Xytex, told him no more than 40 kids would be born using his sperm and that any leftover vials would be used for research.
Stone-Miller said the families he has found are “the most beautiful thing that’s ever happened” to him, but that the large number makes it impossible for him to play the role the kids want him to play in their lives.
“I’m furious with the sperm bank because they robbed me and the kids of close relationships,” he told his followers.
Wendy Kramer, who runs the Donor Sibling Registry (DSR) – a database donor-conceived people use to find their genetic relatives – told LGBTQ Nation that the biggest donor sibling cohort on the site has 250 people, but that there are many with more than a hundred.
The large numbers pose several risks, including accidental incest, widespread cases of rare genetic conditions, and mental health challenges for those involved.
Stone-Miller – who founded the nonprofit DCP Data to help connect donor-conceived people – described it on Instagram as “existentially exhausting” for the kids to never really know how many genetic siblings they have.
In testimonials on the DSR, one donor-conceived person said they struggle with “feeling like a commodity” and with being rejected by their donor’s immediate biological family members who “are horrified and quite unable to cope with the idea of hundreds of siblings.”
A recipient parent wrote their child struggles with “feeling like a clone” and is “completely overwhelmed by the enormity of the situation,” including the fact that they’ll never be able to build meaningful relationships with all of their biological relatives.
“My 10 yo has told me she’ll look for all of her siblings (100+) until she dies,” the parent wrote. “This is a terrible burden for her to carry.”
But without any regulations with which to comply, the banks have no incentive to change. They do, however, have one big incentive not to.
“Whenever you ask, why is it the way it is or why don’t they do this, it’s always the same answer,” Kramer said. “One word: money. It costs money to have accurate record-keeping. It would cost money to actually limit the number of kids because then you wouldn’t just sell, sell, sell.”
Sperm banks do not make their profit margins widely available, but the global market is estimated to be worth more than $5 billion. In the U.S., vials routinely cost between $500 and $2000 (sperm donors only make about $100 per donation, which can then be split into multiple vials). Sperm banks also often charge hundreds of dollars extra for more information on donors, such as voice recordings and essays.
“This is hard, heavy money,” High said. “They don’t want to lose that third yacht.”
It’s not just personal. It’s medical.
Experts resoundingly agree that the number one reason for greater transparency is to give donor-conceived people access to a complete medical history.High alleged that one of the worst lies the banks employ is that all the medical information a family will ever need is in the donor profile on the website. She accused the major banks of “actively lying to recipient parents about how genetic testing works, how much genetic testing they’re actually doing, and how a medical history works.”
“To me, it’s taking advantage of marginalized communities and traumatized communities,” she said, explaining that the testing is often not as extensive as it seems and that the college students they often recruit may not actually know their entire family’s history.
“The cryobanks aren’t calling the donor’s mom to verify… They’re literally going to college campuses to recruit super young adults, promising them you can pay for your spring break… It’s outrageous.”
Many sperm banks do indeed target students from prominent schools. California Cryobank’s website, for example, states that the majority of its donors “are recruited from world-class universities, including UCLA, USC, Stanford University, Harvard University and MIT.” The bank says it uses university publications, internet advertising, and information seminars to recruit, with donor age requirements being 19 to 39.
A 2020 article in the Harvard Crimson mentioned California Cryobank’s Cambridge location being “conveniently located between Harvard and MIT.”
Marketing toward these students is often focused exclusively on money (and can be oddly sexually suggestive) without acknowledging the long-term consequences of donating.
One such student donation led to the conception of Steven Gunner, who died in 2020 at age 27 from an opioid overdose after years of struggle with addiction and schizophrenia. After his death, Steven’s parents discovered that his donor had also recently died from an overdose after battling the same mental illness.
It is difficult to test DNA for schizophrenia risk, but it turned out that when he donated as a college student, the donor had already been hospitalized for behavioral issues, which he did not disclose on his medical questionnaire. Banks, however, rely largely on the honor system and do not typically verify medical histories.
The Gunners have since advocated for legislation to change that, acknowledging the contradiction that a law may have stopped their beloved son from ever being born. But his mom told the Wall Street Journal that it also would have prevented his years of anguish.
High – who has been outspoken about enduring her own medical issues without access to half of her genetic history – pointed out that had Gunner’s parents at least been informed of the donor’s schizophrenia diagnosis after their son was born, they could have known what signs to watch for in their son and gotten him help earlier. Banks claim to inform recipient parents of relevant medical updates about donors but advocates like High allege they rarely do.
High is the self-proclaimed “donor-conceived person of TikTok.” She became an expert on sperm donation after discovering her parents were told the wrong ethnicity of her donor, that she had no idea how many donor siblings she had, and that once her donor refused contact with her, she had no way to obtain critical medical information.
She began talking about her experience on TikTok, and her account quickly spiraled. Now, she shares her intimate knowledge of the industry with her 682,000 followers.
High says much of the medical information on the donor profile is “useless.” She said she’s heard too many horror stories about kids with illnesses that were missed for too long because doctors didn’t know to test for them.
“I’ve been on the phone with too many recipient parents in tears… I absolutely think everyone should have access to their genetic identity. That’s a human right… But number one is just health and safety.”
One parent on the DSR wrote about a donor with 99 known genetic children who has a rare genetic disease called neurofibromatosis that typically affects about one in 2,500 people. The parent alleged the sperm bank waited six months after the first child was diagnosed to alert the clinics where the sperm was delivered and added that “there are reasons to believe the sperm donor wasn’t properly screened.” They said at least 19 kids have been diagnosed with the illness.
Stories like this are plentiful.
The end of anonymity
Spiers’ experience of discovering her 37 siblings inspired her to dedicate her life to advocating for industry reform. She currently serves as vice president of stakeholder engagement for the U.S. Donor Conceived Council (USDCC), which advocates for laws and policies that prioritize the best interests of donor-conceived people.
Established in 2021, the organization believes in stricter family limits, as well as outlawing anonymous donation (which barely exists anymore anyway), with the idea that donor-conceived people have a right to know their genetic roots for both medical and personal reasons.
Spiers was clear: “It’s not just about passing any regulation; it’s about passing the right regulation.” This means making sure any change keeps families protected. USDCC works closely with lawmakers, LGBTQ+ organizations, and the Uniform Law Commission – a bipartisan group of experts that created the Uniform Parentage Act as a model for state parentage laws – to ensure the policies it advocates for do not jeopardize the legal rights parents have over their children.
Parentage laws are especially important for LGBTQ+ people, who often utilize donors and must take extra steps to ensure legal rights over their kids.
In 2022, USDCC was involved in the landmark passage of Colorado’s Donor-Conceived Persons and Families of Donor-Conceived Persons Protection Act, hailed as the first U.S. law protecting the rights of donor-conceived people.
Set to take effect this year, it gives donor-conceived people the right to identifying information about their donor when they turn 18 and creates an enforceable 25-family limit per donor. It requires fertility clinics and gamete banks to check in with donors for medical updates and make them available to the necessary parties. It also mandates that donors and parents receive educational materials on the interests of donor-conceived people.
It is telling in and of itself that these seemingly bare minimum requirements are hailed as historic.
But for some people, ID disclosure at 18 is far from good enough.
In 2020, Danielle Winston and her wife, Paige Kennedy-Winston, founded Seed Scout, a concierge sperm donor matchmaking service that promotes contact with the donor from birth, requires a three-family limit, and is stringent about medical updates.
Winston told LGBTQ Nation that more than 80 percent of the families they work with are LGBTQ+ and that most of their highly-vetted donors are gay men. “A lot of people really find it heartwarming. It’s part of our own community, and those people really get it.”
Winston – who also used a known donor to conceive her son – said some clients are hesitant about the model at first, but once they meet their donor, the worries disappear.
“The friendships between clients and donors, the way that people call us or message us on Slack after they’ve met the donor. They’re like, ‘I never thought I could find a donor like this.’”
For each family, it’s a build-your-own adventure. Some merely check in with their donors once a year for health updates, while others build strong friendships where the donor becomes part of the child’s life. But the most comforting part for everyone, Winston said, is that when the kids start asking questions, they’ll have the answers.
Winston hopes Seed Scout will be part of a culture shift in the industry, which was built on shame and secrecy from the start.
For almost a century, artificial insemination was used exclusively for heterosexual couples experiencing male infertility, which was (and still is) highly stigmatized. Poor record-keeping was purposeful to maintain anonymity. Parents were advised to conceal the use of a donor from their children and more or less pretend it never happened.
The first recorded artificial insemination was done without even the recipient parents knowing. In 1884, Dr. William Pancoast inseminated a woman under anesthesia using a medical student’s sperm. It led to a baby. Years later, the doctor told the husband what he’d done, but neither ever told the wife.
By the time sperm donation became more popular in the 1980s, that culture of secrecy had permeated every nook and cranny of the industry.
But Winston emphasized that parents need not feel threatened by known donors, that they are often far more concerned with ensuring they have no obligation to support the kids than they are with becoming significant figures in their lives.
“It takes a village to create love for a kid,” she said, “to give them the strength mentally and to have them go on and be the best version of themselves. That’s the way I view it.”
Kramer agreed.
“Donors don’t want to be a parent to the kids. Parents don’t want money. There’s no reason why adults cannot be empowered to do the best thing for their kids… So many parents are in this fear-based place of keeping the donor out because they feel somehow threatened… When properly counseled and educated, all those fears just dissipate because they’re based on false assumptions.”
“We have so many adult donor-conceived people who come to the DSR and then say to their parents, ‘I could have grown up knowing my half-siblings. Why didn’t you let me?’”
Despite the complexity associated with large numbers of donor siblings, Kramer said the connections made through the DSR are “overwhelmingly positive.”
“Before we came along, people didn’t understand that they had the right to be curious,” Kramer said. “We circumvent the industry and put the power back in the family’s hands.”
Kramer’s work has changed thousands of lives, but she laments that it’s necessary. “This really shouldn’t be my job. I’m just the mom of a donor kid. The reason I’m doing it is because the industry won’t do it.”
Work like Kramer’s has fueled some change, as several banks now have their own optional sibling registries. Acknowledging the challenges of anonymity today, some have also shifted to exclusively working with donors who are willing to disclose their identity to offspring when they turn 18.
Apart from following each country’s laws, Cryos International’s Nielsen said he does not believe it is Cryos International’s place to determine which type of donor (anonymous or open ID) is “more ‘right.’”
“There are many different and legitimate reasons why future parents would choose either type of donor… As long as there is a demand for both types of donors, Cryos will offer them. And we will provide our best possible advice for future parents on which type of donor to choose as well as solid information for our donors about the implications of their choices.”
The rising tide
High believes the industry has reached a tipping point. Things have been “snowballing,” she said, since the 2022 release of Our Father, a documentary about a massive fertility fraud scheme.“This is an avalanche right now,” she said. “The amount of stories that are coming out at such a high rate… We are in the avalanche.”
“The donor-conceived community and recipient parents are talking. Donors are talking. We are now all comparing notes and realizing, oh sh*t, we were lied to… Something that should be so carefully and thoughtfully put out into this world was literally handled like a ham sandwich in a plastic bag.”
High called herself “annoyingly positive” and said she has “full faith” that the industry will improve. Sperm banks will never choose to do so on their own, she guessed (as did every other source who spoke with LGBTQ Nation), but those fighting for change will ultimately force their hand.
She predicts that within 20 years, the U.S. will mandate donor identity disclosure when a child turns 18. She also believes there will someday be a national family limit, as well as better counseling and more education. She thinks more people will become infertility trauma-informed, more banks will train staff in LGBTQ+ issues, and that eventually, there will be some sort of standardized educational packet fertility clinics provide to prospective parents about raising a donor-conceived child.
“This cannot be a profit-centered industry,” she said. “It must be family and child-centered.”
“I don’t know what the best system is, but I do think that it is going to be a little bit more official. Let’s join the rest of the countries. Everyone else has got their ass a gear with this. Let’s move it along.”
