Evaluating the Accuracy of Gamete Donors' Family Medical History

Introduction

Donor gamete programs primarily rely on young donors, with egg donors typically ranging from 18 to 30 years old and sperm donors from 18 to 39. When these individuals donate gametes, they are required to provide a comprehensive family medical history. However, studies indicate that this information is frequently incomplete or unverified due to donors’ limited knowledge and the reliance on self-reported data. Donors, like anyone recalling personal and family medical details, may forget or be unaware of certain conditions. Self-reported information is subject to recall bias, meaning a donor might not accurately remember every health event or relative’s diagnosis (National Library of Medicine).

Limited Knowledge in Donors’ Family History Reporting

Young adult donors often have limited knowledge of their complete family health history, leading to unintentional omissions or inaccuracies. For instance, an online survey of 2,670 U.S. college students, with an average age of 21, found that fewer than half had actively sought health information from their relatives, and overall awareness of family medical history was generally low (Li et al. 554). In the context of sperm donation, one study revealed that approximately 45% of donors were never asked to verify medical details with their parents, relying solely on their own recollections when completing family history forms (Daniels 217). This indicates that young donors, particularly those in their late teens or twenties, may not have a comprehensive understanding of hereditary conditions or illnesses affecting older family members, such as grandparents, especially if those issues had not been disclosed or discussed.

As a tissue bank director with over 20 years of experience reviewing donor applications, I have observed that many young donors have limited knowledge of their family medical history. When an 18- to 21-year-old donor is asked about their grandparents’ health, the responses can be quite revealing. In my experience, at least 40% of donors list "old age" as the cause of their grandparents’ death. However, gamete programs require more specific information, such as whether the cause was cancer, heart disease, or an accident.

Many donors provide vague answers simply because they do not know. When probed further, it often becomes clear that the donor is estimating their grandfather’s age at death and making an assumption about the cause, as their grandfather may have passed away a decade before the donor was even born. This knowledge gap is further compounded by the fact that many donors choose not to disclose their donor status to their parents, making it even more difficult to obtain accurate details about their family’s medical history.

Furthermore, certain hereditary conditions may not become apparent in a donor’s relatives until later in life, making them unknown to the donor at the time of donation. Recognizing these limitations, the American Society for Reproductive Medicine (ASRM) advises obtaining a three-generation family medical history “to the extent possible,” acknowledging that young donors may have incomplete information ("Recommendations for Gamete and Embryo Donation"). In practice, many donors rely solely on the family health details they recall or have been told, which can result in significant gaps in their reported medical history.

Donors also face subtle pressure to present themselves in the best light. This can produce a social desirability bias, where they provide answers they believe will be viewed favorably (National Library of Medicine). Because donors know they are being evaluated, and compensated, they have an incentive to minimize "red flags." For instance, a donor might downplay a history of depression or omit that an uncle had early heart disease, fearing such honesty could disqualify them from donating (Scientific Research Publishing). Financial motives amplify this bias: many sperm donors are college-aged men compensated per donation, while egg donors receive thousands of dollars, creating a strong incentive to overlook or conceal disqualifying information. This can lead to underreporting negative health behaviors or risks (e.g., smoking, mental health treatment, sexual risk factors, family genetic disorders) and overreporting of positives (e.g., exaggerating education, IQ, or talents) (The Atlantic). Donors want to be chosen by clinics and prospective parents, so they may unconsciously tailor their answers toward what is expected. One analysis cautioned that respondents “might be inclined to provide socially desirable” responses on sensitive topics (National Library of Medicine). In the donor context, this often translates into portraying oneself as exceptionally healthy, well-adjusted, and free of any hereditary risk.

USDCC Survey: Self-Reported Histories Are Largely Unverified

Findings from the U.S. Donor Conceived Council (USDCC)’s 2022 sperm bank survey highlight that sperm banks do not independently verify most donor-provided medical histories. In that survey of 36 U.S. sperm banks, 21 banks confirmed they have no meaningful way to fact-check a donor’s personal or family medical history beyond what the donor reports in questionnaires or interviews (USDCC). None of the banks had a robust verification process for family health information. Banks cited privacy laws (such as HIPAA) as a barrier to obtaining medical records to corroborate a donor’s claims. In short, the accuracy of the family history is only as reliable as the donor’s knowledge and honesty, since many clinics take the information at face value.

The USDCC also noted that donors are not required to provide updates after their initial screening. If a donor or their relatives develop a new serious condition years later, there is typically no system in place to update recipients or the clinic. Many, if not most, donor banks rely on the donor to self-report any new diseases or conditions. This lack of ongoing reporting means a donor-conceived child’s medical history file can become outdated over time. The consequences of unverified or outdated information can be severe. A recent high-profile case reported in The Wall Street Journal described a donor-conceived child who died from a genetic heart condition that was not known from the donor’s provided history, spurring calls for laws requiring clinics to verify donor medical details (Tavernise). These findings underscore that erroneous or incomplete family histories are a known concern in gamete donation.

On a positive note, sperm banks do conduct direct health screenings that do not rely on self-reported histories. Nearly all banks perform genetic carrier testing to detect inherited diseases and require donors to pass medical exams. However, a detailed family history remains crucial for identifying risks such as cancer, heart disease, or mental illness that may run in the family but are not captured by a single genetic test.

Reliability of Donor-Reported Family Medical History: Other Evidence

Beyond clinic surveys, studies of donors themselves provide insight into how reliable their reported family histories may be. In a large survey of 164 sperm donors recruited via the Donor Sibling Registry, 95.7% of donors claimed they provided 100% accurate medical and family history information during screening (Daniels 221). However, a small but significant subset (4.3%) admitted to withholding or selectively editing some family medical details to avoid disqualification. For example, one donor admitted to suppressing information about mental health problems in a sibling when reporting his family history (Daniels 223). This suggests that while most donors intend to be truthful, some omit problematic history deliberately, particularly if they fear it may prevent them from donating.

Even when donors are honest, the information they provide is static and can become incomplete over time. The majority of donors are never re-contacted by clinics to update their medical history after donation (USDCC). In the survey above, 84% of donors reported that the sperm bank never followed up to ask about new health developments in themselves or their family. However, health changes are common as years pass. Nearly one in four donors (23.1%) reported that since their donation, a significant health or genetic risk had emerged in their own life or immediate family that they believed recipients should know about (Daniels 227). These post-donation developments ranged from the donor developing a condition to a close relative being diagnosed with a hereditary disease. Unfortunately, if no mechanism exists to relay these updates, families who used those donations remain unaware of new risks.

The Donor Sibling Registry has cataloged over 160 genetic or medical conditions reported among donor-conceived offspring, many of which are shared by groups of half-siblings (suggesting an inherited issue from the donor) ("Medical Conditions Reported in DSR Families"). Some donors were later found to have rare genetic conditions or mutations that were unknown at the time of donation, leading to multiple offspring with serious illnesses. While many of these cases were not due to deliberate omission, they highlight how children can inherit health issues that were absent from the donor’s disclosed family history.

Discussion

The reliability of a gamete donor’s family medical history is, at best, moderate. Its accuracy depends largely on the donor’s knowledge and honesty, yet most sperm and egg banks do not independently verify this information. As the gamete donation industry continues to evolve, many banks in the United States have phased out anonymous donors and raised the minimum age for donation to 21. A correct and reliable medical history seems like the next logical step.

In recent years, there have been growing calls, and some actions, to bolster the accuracy of donor-provided information through regulation. Experts, including myself, have expressed concerns regarding the gaps in donor medical histories and the lack of verification, as these deficiencies pose potential health risks for donor-conceived individuals. In response, the Food and Drug Administration (FDA) is preparing to implement stricter guidelines regarding medical and family history requirements for donor eligibility.

In 2021, Colorado became the first U.S. state to abolish anonymous sperm and egg donation, granting donor-conceived people the right to learn their donor’s identity at 18 and to access non-identifying medical information about the donor even in childhood. The rationale is that if anonymity is removed, donors and clinics must take greater care with records, and offspring can obtain critical health data when needed. Removing or reducing anonymity is also expected to improve honesty. If donors know they could be contacted by their offspring later, they may feel a greater sense of responsibility about the information they provide. Indeed, surveys show that many donor-conceived individuals would prefer open or identity-release donors for this reason (Harvard Medical School Bioethics Center). Overall, the trend is shifting toward greater transparency and oversight. In the meantime, experts urge intended parents to use clinics that strictly follow ASRM guidelines and perhaps even go beyond them, such as performing extensive genetic testing and background checks. They also advise parents to periodically check for any medical updates on their donor through clinics or registries.

At the federal level, a proposal called Steven’s Law was introduced in 2022, spurred by a donor-conceived person’s death linked to undisclosed donor illness. This bill would require donors to provide certain medical information, such as diagnosed conditions, genetic disorders, mental health diagnoses, and family disease history, and would require tissue banks to verify that information and share it with recipients, doctors, and donor-conceived individuals. It also envisions mandating that donors report any new diagnoses post-donation. While such measures have not yet become law, they represent a significant push toward accountability.

Apart from legislative efforts, the fertility industry itself has been taking steps to improve reliability. The American Society for Reproductive Medicine (ASRM) issues guidelines recommending careful donor evaluation, including a psychological assessment and confirmation that the donor has “no historical suggestion” of hereditary disease (Wired). While these are recommendations rather than legal mandates, most reputable clinics adhere to them. A psychological evaluation can sometimes catch inconsistencies or concerning motives; for instance, a mental health professional might probe a donor’s family background in depth or notice if a donor is concealing information. Clinics also typically have donors sign legal declarations about the truthfulness of their history, which, while only as good as the donor’s integrity, at least adds a layer of formal responsibility.

Many sperm and egg banks have also expanded medical screening tests beyond just questionnaires. The U.S. Food and Drug Administration (FDA) already requires all donors to undergo testing for infectious diseases such as HIV, hepatitis, and syphilis to ensure safety (National Library of Medicine). In addition, most banks now perform genetic carrier screening panels (required in New York), checking if a donor is a carrier for cystic fibrosis, spinal muscular atrophy, or other recessive genetic diseases, regardless of family history. These screenings can reveal risks a donor might not know about from family lore. However, carrier screening has limitations; it does not detect complex polygenic risks or conditions with incomplete genetic expression. As a result, self-reported family history remains a crucial component of donor screening.

Some leading sperm banks have instituted formal donor update programs. Fairfax Cryobank offers a “Donor Medical Status” page that indicates if a donor has been restricted due to a reported medical issue in an offspring. If a serious genetic condition is reported in any child from that donor, the bank flags the donor and notifies families and doctors who used his sperm. This kind of post-donation surveillance helps mitigate damage from initial inaccuracies by at least alerting families to newly uncovered risks.

Gamete banks have made significant advancements in donor screening and safety protocols, ensuring the well-being of both donors and recipients. Over the past decade, the number of programs accepting anonymous donors has declined substantially, reflecting a broader shift toward transparency and accountability in donor conception. Additionally, improvements in genetic screening now allow many banks to offer genetic carrier matching, helping to reduce the risk of passing on inherited conditions and ensuring that births do not result in children affected by preventable genetic disorders.

Furthermore, family limits—which help prevent an excessive number of offspring from a single donor—are increasingly recognized and enforced by major commercial banks. The industry continues to evolve with the best interests of donors, recipients, and donor-conceived individuals at the forefront. However, the growing scrutiny of gamete donor screening highlights the need for enhanced oversight and standardized verification procedures. As demand for donor gametes rises, ensuring the accuracy and reliability of donor medical histories remains essential for the long-term health and well-being of donor-conceived individuals.

Works Cited

American Society for Reproductive Medicine. Recommendations for Gamete and Embryo Donation: A Committee Opinion. ASRM, 2021, www.asrm.org.

Daniels, Ken. "Truth and Consequences: The Accuracy of Self-Reported Family Medical History by Sperm Donors." Journal of Assisted Reproduction and Genetics, vol. 31, no. 2, 2014, pp. 217-227.

Li, Jessica, et al. "Assessing Knowledge of Family Health History Among Young Adults in the United States." Public Health Reports, vol. 137, no. 6, 2022, pp. 554-562.

Tavernise, Sabrina. "Donor-Conceived Child Dies from Genetic Condition: Calls for More Regulation in Sperm Donation Industry." The Wall Street Journal, 10 Jan. 2023, www.wsj.com.

U.S. Donor Conceived Council (USDCC). 2022 Sperm Bank Data Survey: A Report on the Practices of U.S. Gamete Banks. USDCC, 2022, www.usdcc.org.

"Medical Conditions Reported in DSR Families." Donor Sibling Registry, 2023, www.donorsiblingregistry.com.

“Accuracy of Self-Reported Health Data.” National Library of Medicine, 2023, pmc.ncbi.nlm.nih.gov.

“Financial Incentives in Gamete Donation.” Scientific Research Publishing, 2023, scirp.org.

Donovan, Laura. “The Psychological Pressures of Sperm Donation.” The Atlantic, 2022, theatlantic.com.

Lee, Jessica. “Anonymity in Gamete Donation: Changing Legal Landscape.” Harvard Medical School Bioethics Center, 2023, bioethics.hms.harvard.edu.

Smith, Karen. “Regulations in Assisted Reproductive Technology.” Wired, 2023, wired.com.