"Who am I?" Haunting question for kids of anonymous sperm donors

When Jaclyn Frosolone swiped the solution from the inside of her cheek, she had no idea she was about to unravel thousands of buried truths about her identity. The young woman from New York had taken an at-home DNA test on a whim, never expecting the earth-shattering results waiting on the other side. Instead of confirming her sole sisterly bond as she assumed, the report revealed dozens of previously unknown half-siblings scattered across the country. Even more mind-blowing, Frosolone's sperm donor had fathered at least 200 children through anonymous donations to a sperm bank. Unbelievably, this same sperm donor's genetic materials are still being purchased and used to conceive even more children today.

As the linkages multiplied, an inescapable reality dawned. Jaclyn's conception had defied traditional biology, taking place not through her mother's husband but via the genetic contributions of a total stranger. A sperm donor's legacy was playing out inside her, crafting a personal history far more complex than she ever imagined. Jaclyn would soon discover that this biological phenomenon, while deeply unsettling, had bound her to an entire community of individuals facing the same identity crisis. 

What started as a moment of innocent curiosity triggered a tidal wave of questions without answers. Three years later, Frosolone says she still hasn't fully processed and come to terms with learning about her unconventional genetic ancestry and family ties. While she initially thought having so many newfound siblings seemed cool, she now feels detached and dissociated from the whole situation. Frosolone believes if she had known the complete truth about her DNA and biological origins from the start, she could have better prevented or managed her long list of complex health conditions.

These medical issues include a fluid-filled cyst in her brain that causes body tremors and could lead to paralysis, as well as anxiety, depression, irregular heartbeat, ADHD, severe vaginal pain, and persistent rashes. Most troubling of all, the majority of Frosolone's many new donor-conceived siblings she has connected with also suffer from similar debilitating conditions like cysts, heart arrhythmias, anxiety, severe eczema, depression, connective tissue disorders, PCOS, gastrointestinal problems, OCD, and chronic infections.

Shockingly, none of these serious health problems were listed on the profile of their shared sperm donor. Nor are they commonly occurring issues on the side of their biological mothers who used the donor's sperm to conceive. According to a geneticist professor, this striking pattern "suggests some complicated genetic interaction" is likely at play within this cohort of donor-conceived siblings.

For countless Americans like Frosolone who were conceived via sperm donation, it is extremely difficult to understand their medical background and genetic risk factors fully. This is because sperm donors in the United States can choose to remain permanently anonymous and unidentified if they wish. While some open-minded donors may agree to have an "open identity" that allows contact with children conceived from their donation once they turn 18, a donor's guaranteed anonymity can no longer be assured. This is due to the rise of consumer DNA testing services like Ancestry.com and 23andMe, which can identify genetic relatives through cross-matching.

A psychotherapist in Dallas calls this shocking discovery of one's donor origins and expansive "donor-conceived siblings" network a "genealogical bewilderment" - a profound crisis of identity, ancestry, and family history. This shaking of foundational roots often adds immense emotional distress and mental health challenges on top of any physical health issues.

The truth is the entire sperm donation industry in the United States has very little comprehensive regulation or oversight. Only a patchwork of minimal guidelines exists from state and federal authorities. This means the standards and practices can vary wildly between different sperm banks and clinics across the country.

The FDA requires basic screening of anonymous sperm donors like a physical exam, background questionnaire, listing of personal medical history, and testing for infectious diseases. However, advanced genetic testing of donors is merely recommended by experts, not legally mandated, though most sperm banks choose to conduct it.

Even more concerning, these sperm banks may not always thoroughly fact-check or investigate the self-reported health information provided by sperm donors. Nor do they all require donors to provide updated medical data as new conditions may develop later in life. This has allowed some sperm donors to have inaccurate or incomplete profiles with missing red flags about their genetic backgrounds and risk factors. In one infamous past case, several mothers were horrified to learn after conceiving that their children's sperm donor had lied about his educational credentials and criminal record while also hiding his diagnosis of schizophrenia, which tends to run in families.

The profile for Frosolone's sperm donor listed him as a "non-carrier" for the genetic disorders he was screened for at the time. However, his profile also showed reports of children being born with very rare genetic conditions like tuberous sclerosis after being conceived using his sperm donation. As a result, future sales of his donated sperm now require parents to give informed consent after being made aware of these potential risks. 

A recent study of over 11,000 potential sperm donors in the U.S. and Denmark found only 4% had their sperm samples approved for use. In contrast, 17% were rejected for health reasons like carrying genetic diseases. However, even when contact can be made with a donor, there is no guarantee they will be willing or able to provide updated details about newly developed medical issues.

A nonprofit organization called the U.S. Donor Conceived Council is pushing for new laws to give donor-conceived adults the legal right to access their sperm donor's true identity as well as full medical records and history. They are also advocating to legally limit the number of families and children that a single sperm donor can contribute to.

Last year, Colorado became the first state to pass this type of groundbreaking legislation for the rights of donor-conceived people. In 2025, Colorado will cap the number of families per sperm donor at 25. It will require clinics to regularly follow up with their donors to request updated health status information that can be passed along.

Jamie LeRose, age 23, from New Jersey, is one of Frosolone's many newfound half-sisters conceived using the same sperm donor. LeRose always knew from a young age that she was a donor-conceived child, but she is still desperate for answers about her genetic background and ancestral medical history. This is because LeRose suffers from a seemingly endless "snowball effect" of overlapping health issues, including PCOS, gastroparesis, borderline personality disorder, chronic infections, ADHD, anxiety, rapid heart rate upon standing up, blurred vision, migraines, OCD, cysts, and Ehlers-Danlos syndrome affecting her connective tissues.

Around 90% of LeRose's extended list of medical problems are strikingly shared in common with the majority of her many other donor-conceived siblings, which is profoundly concerning to her. So much so that LeRose believes she does not even want to have children herself out of fear of passing along these genetic health conditions without understanding their full origins and causes. 

At one point, LeRose called the very same sperm bank, pretending to be a prospective customer interested in purchasing additional vials of her sperm donor's genetic materials. The sperm bank representative initially proceeded with the process as normal until LeRose revealed the truth - that this was her biological father's sperm she was trying to purchase, creating a potential accidental incest scenario had they allowed it.

Another of Frosolone's half-sisters making up this large group of donor-conceived siblings is 25-year-old Myah Alanna. She connected with LeRose and others after learning at age 16 during her parents' divorce that she, too, was conceived not through traditional means but by way of an anonymous sperm donation from this same donor.

Alanna had dreamed since childhood of becoming a professional singer, but that lifelong goal was shattered by a chronic cough, PCOS-induced vomiting, and the growth of cysts and paralysis in her vocal cords - many of the same rare conditions that LeRose and other siblings also suffer from due to their shared genetic ties. Having her passion for singing and her envisioned life purpose ripped away by these mystery health issues has been devastating to Alanna's core identity.

The three sisters and their expanding group of donor-conceived siblings all express immense frustration that outsiders can never fully comprehend the unique anguish of having no family health history or understanding of their genetic ancestry. They find some comfort in connecting to share information and realize they aren't alone in this battle. However, it is still extremely difficult for them to fully trust anyone again after being lied to by their parents, dismissed by doctors, and left so profoundly in the dark about their biology and roots for so long by the sperm donation process. 

Despite the deep emotional toll this genealogical bewilderment has taken on their lives, they remain determined to advocate for legal protections and raise public awareness about the struggles of the donor-conceived community by bravely sharing their personal experiences.

Related Article: 23andMe notifies customers of data breach into its 'DNA Relatives' feature