
The Importance of Medical History
The primary purpose of a donor’s medical history is to promote the health and safety of donor conceived persons (DCP) and pregnancies. A donor’s personal and family health history provides insight into potential risks for heritable and non-heritable health issues.
Health history is leveraged in the initial screening of potential sperm and egg donors to determine a donor’s qualification for a donor program. A donor with a personal history of a highly heritable or infectious disease may be excluded due to the high risk of passing the disease to DCP. Donor history is also important in the donor selection process, allowing prospective parents to make informed decisions during donor selection.
Although a donor’s initial screening may be comprehensive, it is important to remember that health history is expected to change over time. New history for the donor, their relatives, or DCP may become available, and that information could inform health management for others at risk.
Collection of Medical History
Health history is collected in multiple ways at multiple occasions. Medical history is first acquired during the qualification of potential donors but can also be provided years later. In the US, sperm donors are required to provide information such as travel and sexual history to assess risk for infectious diseases. To assess for heritable health risks, donors also report detailed personal and family health histories, such as specific diagnoses, age at diagnosis, causes of any deaths, treatment details, and any known causes or contributing factors to health issues.
After initial screening, new or evolving health issues may be reported by the donor for themselves or their relatives. Health reports may also come from a donor recipient, DCP, or their healthcare providers for medical issues identified in an affected donor conceived person, pregnancy, or embryos. Additional details may be requested from the reporter in an effort to validate the information and get a more complete picture of the health issue, all in an effort to determine what, if any, risks may exist for others.
Components of Medical History
The information collected in the medical history of donors typically includes:
Personal Health History: A donor’s personal history is assessed in part by evaluations or tests such as physical exams or bloodwork for cholesterol and hemoglobin levels. Donors are also asked to report details of their own medical history, including any past or current health issues, mental health concerns, surgeries, and any treatments or therapies received. Some banks employ genetic specialists such as genetic counselors to collect more details of a donor’s health history. It may include information about the circumstance surrounding a health issue, treatment details, or lifestyle factors such as smoking, alcohol consumption, and drug use. Personal medical records may be requested on a case-by-case basis if deemed appropriate in assisting the assessment of a specific health concern.
Reproductive Health: Sperm donors typically undergo blood tests for infectious and sexually transmitted diseases in addition to semen analyses to assess sperm quality, count, and motility. Likewise, egg donors also typically undergo blood tests and ultrasounds to assess their fertility. Reproductive health history is also collected, including any history of pregnancies, pregnancy outcomes, infertility, and use of any assisted reproductive technologies.
Genetic Testing: Many banks perform carrier screening and chromosome analyses on donors to identify risks for recessive genetic disorders or chromosomal abnormalities in DCP. It is important to note these tests are not comprehensive of all known genetic disorders or heritable health issues.
Psychological Evaluation: Some banks may also conduct a psychological evaluation of potential donors to assess their mental health and suitability for donor program participation. The evaluation includes a standardized personality assessment and an interview with a psych professional. This not only helps to ensure donors understand and are capable of consenting to the donation process, but also evaluates mental health concerns to assess for heritable risks for mental health disorders.
Family Health History: Donors are required to provide health history information for their immediate relatives including parents, siblings, and grandparents. Banks that employ genetic counselors may collect health histories across three generations of the donor’s family, expanding to aunts, uncles, and cousins. Donors are prompted to report any health issues or diagnoses for relatives including birth defects, developmental issues, mental health concerns, cardiovascular or neurological diseases, cancer diagnoses, autoimmune disorders, and more. Additional details such as ages of onset, treatment history, and any known causes may be collected. A donor may also be asked if there is limited information or contact with certain relatives to capture where there may be gaps in the recorded history.
Limitations
While strategies employed to collect and disclose medical history may be robust, it is important to understand where limitations exist.
Reliability: Donors may not always have complete or accurate information due to limited knowledge, lack of contact with family members, or privacy concerns within the family. The information provided also relies on the accuracy of the donor’s memory and their honesty. Similarly, health history regarding a DCP relies on self-disclosure and certain details may remain unverified or insufficient to complete an accurate and reliable assessment of heritable risk.
Genetic Testing: Genetic tests are an important tool to identify risks for certain genetic disorders. However, it is impossible to predict all potential genetic risks or health outcomes for DCP. Among what is routinely tested, it is important to note that there are often differences in what genes are tested between laboratories and even within the same laboratory over time. Additionally, some health conditions result from a complex interaction between genetic and nongenetic factors that cannot be identified on genetic tests. Additionally, testing for some genetic conditions, such as adult onset genetic disorders, is not routinely performed on donors.
Changing Health Status: Medical history is expected to change over time. Even the most detailed health history provided during initial screening cannot predict if, when, or how the health of a donor, donor relative, or DCP will change in the future. It is important to understand that health history is dynamic.
Reduced Accessibility to Information: While medical history information may be accessible when initially collected during the donor qualification stage, information availability may taper over the years following donation. Donors may move, or change email addresses or phone numbers, which limits a bank’s ability to reliably reach a donor. For legal and privacy reasons, most banks also do not have direct relationships with donors’ relatives to reach out for updates if the donor is unreachable, unavailable, or possibly deceased.
Similarly, on the DCP end, if a bank’s initial client (the recipient parent) is not accessible, there may be difficulty communicating significant health information related to the DCP. In the event banks go out of business without another entity inheriting donor and client records, there may be no appropriate establishment at all to collect and manage new medical information.
Process Differences: Many banks currently utilize robust processes for information collection and disclosure pre- and post-donation. However, practices can vary widely between gamete banks and over time. It is important to be aware of how a bank collects, stores, and provides health information to understand how to obtain and provide health information and where limitations may exist.
Conclusion
Medical history is an important aspect of donor screening and selection, as it provides valuable information for prospective parents and healthcare providers to make informed decisions about reproductive options and family planning. Medical history remains dynamic as new health information can become available to assist in appropriate care for at-risk individuals. To be most effectively used, there should be equal awareness of what information is expected to be available and where limitations inevitably exist.
Authored by The Donor Gamete Genetic Counselors
This article represents a collective effort from a group of genetic counselors dedicated to helping donor conceived people, recipients, and donors. Our goal is to offer transparency regarding the processes involved at gamete banks.
Jessica Park, MS, CGC
Katie Hornberger, MS, CGC
Heather Kamen, MS, CGC
Kathryn Lockwood, MS, CGC
Jennifer Luque, MS, CGC
Brynn Persky, MS, CGC