DNA test reveals at least 200 siblings
Donor-conceived kids face a health nightmare
When Jaclyn Frosolone received her 23andMe test results on Jan. 1, 2021, she assumed the company confused her DNA with someone else’s. Frosolone thought she had only one sister, but when dozens of half siblings appeared on her laptop screen, she anxiously messaged some of them looking for answers.
Frosolone, 24, eventually learned she was conceived via anonymous sperm donation − and shares a donor father with at least 200 siblings. His sperm is still being sold today. Frosolone called her mother, who confirmed the news through tears and revealed that she had burned all of her donor’s paperwork to keep the truth from coming out.
“It’s been three years, but I still haven’t really processed this . ... I’m trying to work through it.”
Jaclyn Frosolone
“It’s been three years, but I still haven’t really processed this information,” said Frosolone, who lives in New York. “I thought it was cool at first, but now I kind of disassociate, like I’m looking through someone else’s eyes witnessing me trying to get through this.”
Frosolone’s emotions spiraled when she realized she may have been able to prevent or better treat her long list of health problems had she known the truth about her genetics. Today, Frosolone deals with a brain-fluid filled cyst in her spine that causes full-body tremors and threatens paralysis; anxiety; depression; supraventricular tachycardia; ADHD; and severe vaginal pain and dermatitis, among other problems.
In fact, the majority of Frosolone’s siblings with whom she has connected currently or have at one point experienced the same medical struggles,
including but not limited to cysts, arrhythmias, anxiety, severe eczema, depression, connective tissue disorders, PCOS, gastrointestinal issues, OCD and chronic infections.
None of these health conditions are listed on their sperm donor’s profile, and none, according to interviews with several siblings, are prevalent on their biological mother’s side of the family.
“All aspects of the human condition exist on a spectrum of heritability,” said Jennifer “Piper” Below, a geneticist and professor of medicine at the Vanderbilt University Medical Center.
“But the fact that the majority of people in this pod have the same health problems suggests that a much more complicated genetic interaction might be happening there.”
For many donor-conceived people, however, it’s difficult to unravel those health complexities because donors in the U.S. can choose to remain anonymous. Some donors may agree to “open identity,” which allows contact with their donation-born children when they turn 18.
Still, donor anonymity isn’t truly guaranteed, thanks to third-party testing platforms such as Ancestry.com and 23andMe.
“The only people who understand what we are going through are those who are literally going through it too,” Frosolone said. “Although it seems like there’s nobody out there, there’s actually too many experiencing the exact same thing I am, which is terrifying.”
Jana Rupnow, a licensed psychotherapist in Dallas who has been counseling the donor-conceived community for 14 years, calls this genetic revelation “genealogical bewilderment.” It describes the identity crisis that often occurs among adoptees and donorconceived people when they learn the truth about their family history.
“It’s hard enough when you have an unknown medical history, but an inaccurate one adds layers of mental health struggles,” Rupnow said. “Our health is a part of our identity. You have to unravel the shock of finding out something entirely different than you thought, all while dealing with anxiety over the unknown.”
Sperm banks and regulation
Sperm donation is mostly unregulated; it has a patchwork of minimal state and federal oversight, meaning standards vary dramatically from bank to bank. The industry also isn’t required to report or track live births that result from its donations, so it’s unclear how many donor-conceived people are in the U.S.; experts say there are probably millions.
The U.S. Food and Drug Administration requires only that anonymous sperm donors complete a physical exam, general questionnaire, medical history and infectious disease testing. The FDA does not require genetic screening of sperm donors, but the American Society for Reproductive Medicine recommends banks do it anyway, and most of them typically do.
But not all banks verify donors’ selfreported health information or ask that their donors provide medical updates over time, the U.S. Donor Conceived Council (USDCC), a nonprofit that advocates for the donor-conceived community, told USA TODAY. (In one famous case, several mothers learned that their children’s donor lied about his college education and criminal background and hid that he had schizophrenia, which tends to run in families.)
Medical updates are important because many donors are recruited from college campuses who are healthy at the time of donation and don’t know that they carry genes for health conditions that may manifest later in life. Genetic testing may catch some of the more serious diseases, but it isn’t perfect.
Frosolone’s donor father, for example, is listed as a “non-carrier” for the genetic conditions he was screened for. But his profile lists several medical reports of children born with rare genetic diseases, including tuberous sclerosis and primary ciliary dyskenesia. His sperm is now “restricted,” and future sales require a recipient parent’s informed consent.
“What we know and understand about genetics and risk factors for disease is still very little but growing every day,” Below said. “How to use that information to actually change health care decisions or screen participants in donor banks, however, is still the Wild West.”
Most intended sperm donors, however, are screened out in the application process. A study published last year in the journal Human Reproduction of 11,712 men in the U.S. and Denmark found that just 4% had their sperm approved for use and 17% were rejected for health reasons such as infectious or genetic diseases.
Some banks say they will ask donors for medical information or updates upon families’ requests, but donor-conceived people often receive no answers. On the other hand, some donors update banks on their health status but later learn that the banks never contacted recipient families, according to Rupnow.
Even if donor-conceived people have their donor’s identity and contact information, there’s no guarantee they’ll respond or tell the truth.
To prevent these problems, the USDCC is working to push legislation to give adult donor-conceived people the right to their donor’s identity and medical information and limit the number of families per donor.
Last year, the nonprofit spearheaded passage of a bill in Colorado that made it the first state to give adult donorconceived people the right to their donor’s identity and set a limit of 25 families per gamete donor. The bill, which takes effect in 2025, also requires banks to periodically request updates from donors on their health status and contact information.
‘Nobody prepares you’
Desperate for answers about her declining health, Jamie LeRose, one of Frosolone’s half sisters, tried to get in touch with their donor through his brother; he had found and joined a Facebook group the siblings created to meet one another and wanted to get to know his nieces and nephews.
“My donor father didn’t and still doesn’t want anything to do with any of us,” said LeRose, who always knew she was donor-conceived. “It’s not like I wanted a father of this man. I just want answers about half of my genetics because I’m lost and no doctors can help me.”
LeRose, 23, like Frosolone, has dealt with a “snowball effect” of health problems. Some of her conditions include PCOS, gastroparesis, borderline personality disorder, chronic UTIs and vaginal infections, extreme eczema, ADHD, anxiety, POTS, severe blurry vision, depression, migraines, OCD, cysts in her vocal cords and Ehlers-Danlos syndrome (EDS), a group of inherited disorders that affect the skin, joints and blood vessels.
“I share basically 90% of that with the majority of my siblings,” said LeRose, who lives in New Jersey. “Nobody prepares you to have a life like this. We really are so sick and it sucks.”
Her donor’s brother shared that he deals with blurry vision and problems with his joints and ligaments. He also shared that her biological father is his half sibling. Adding to the genetic mystery, neither of them know much about their own father.
“I don’t even want children because of what my life is, and it’s not fair,” LeRose said. Her younger brother shares the same donor father and deals with EDS and blurry vision. “I don’t want to bring a baby into this world with my DNA and pass down all these medical problems without answers.”
Most sperm banks in the U.S. aren’t legally required to keep records of siblings or cap the number of families that can use a specific donor, but there are recommendations from reproductive health experts that encourage banks to enforce limits. If a bank chooses not to follow that guidance, donor-conceived people belonging to large sibling pods not only run the risk of having children with one of their half siblings but also having children with their own father if they were to pursue donor insemination.
LeRose once tested that theory. She called her donor’s bank, asking to purchase his sperm. The bank went on with the process as usual. When LeRose revealed that he’s her biological father, the bank ended the call.
“I have quite a few gay siblings that would have to go through donors to have children,” LeRose said, “and I would rather die than find out that one of them had a baby with our dad because they didn’t know.”
Fear of incest has affected her dating life as well: “I’m 23 and the last guy I was with was 40 years old because I literally look at people my age and I’m grossed out.”
Shattered dreams
Myah Alanna, 25, learned she was donor-conceived at age 16 when her parents were going through a divorce. Seven years later, she took a 23andMe DNA test and connected with her half sisters, Frosolone and LeRose. Alanna wasn’t too rattled by the news until she reflected on the fact that her health problems, most of which she shares with her half siblings, have shattered her dreams of singing for a living. Her half sister, LeRose, is also a singer and faces similar tribulations.
A chronic cough from repeat illnesses, a PCOS-induced vomiting spell and the growth of multiple cysts have bruised and paralyzed Alanna’s vocal cords. She has been singing professionally in theaters across New York since she was 11, but she can’t anymore.
“To have it taken away from me when I haven’t even experienced life yet because of a physical health issue, not even a behavioral one, is extremely frustrating and devastating and has made me a very unhappy person,” said Alanna, who also lives in New Jersey. “Singing is not only how I make money, it’s my purpose. This has robbed me of my entire life.”
She’s now being treated via injections of her own blood into her vocal cords, but they don’t seem to be working, as “nothing ever does,” Alanna said.
“I’m used to being an anomaly, and so are my siblings. We just cope,” Alanna said. “We’re spending so much money on doctors for no answers.
“And trust me, we take care of ourselves. We’re desperate.”
LeRose said that she was taking 22 medications simultaneously at 16 years old, and that for many years she spent nearly every week in a hospital. Now she does everything she can to “suffer at home” because she’s petrified.
“I have endured a lot of medical trauma through vigorous testing and all these medications because no one knew what was going on, which only harmed my body more,” LeRose said.
Had her doctors known her true medical history from the beginning, Frosolone believes she would have been spared a lot of time, energy and stress.
“How many MRIs does a 13-year-old need to go through before they figure out what’s wrong with her? If I knew my real health information since birth, I wouldn’t have had to experience all those traumatic hospital visits,” Frosolone said. “I think my mental health would have been a lot better, and my mother’s too, just knowing that her kid is healthy.”
Sharing their story for a purpose
Whether they were lied to by their parents or gaslighted by their doctors, the siblings USA TODAY spoke to say trust is hard to come by these days.
“There’s a lot of dismissiveness from people who don’t understand what it feels like to be donor-conceived and not know their medical history,” said Rupnow, the psychotherapist. “I think people who have always had that information take it for granted. Talking with people who validate your experiences and mental distress is important.”
It hasn’t been easy discovering siblings as adults, but LeRose, Frosolone and Alanna have been able to find solace in one another.
“I didn’t realize how missing this whole half of my life was affecting me, but it feels like a void is being filled when I connect with some of my siblings,” LeRose said. “Getting answers from them and finding similarities is really helping me.”
Now they’re on a mission to advocate for donor-conceived people by sharing their story so future generations of children born into this community, including their own siblings, are protected.
“This has definitely messed me up a little bit, but I’m trying to work through it,” Frosolone said. “From here on out, I just really want to help people.”