At Seattle Sperm Bank (SSB), we are committed to the health and well-being of families created through our services. Our Genetic Counseling Team diligently monitors all medical updates reported by our clients, donors, distributors, and eventually by donor-conceived people (DCP) themselves. We aim to ensure that all clients, clinicians, and adult DCP will have access to the most up-to-date and accurate donor family history. Here’s an overview of our process to ensure transparency regarding donor family history.
Tracking and Investigating Medical Updates
We ask that any clients who utilize an SSB donor to conceive contact us to report any medical diagnoses in their pregnancy and/or child. We also routinely recontact our active and retired sperm donors to request any changes to their medical history.
When SSB is informed that a donor or a donor-conceived person has a new medical diagnosis, we initiate an investigation. This process typically includes reviewing the donor’s personal and family medical history and lab results, recontacting the donor to inform them of the update and ask more targeted medical questions, reviewing all available birth, pregnancy, and medical update reports, and requesting medical records and genetic test results (if applicable) from the individual reporting the update.
Requesting Genetic Testing in Donors
If an individual conceived using the sperm from one of our donors is found to have a genetic cause for their diagnosis, specifically a pathogenic (disease-causing) variant that may have been inherited paternally, SSB will request the donor-conceived person’s genetic report, results from the egg source’s genetic testing confirming that the variant is not present in the egg source, and clinical notes. If genetic testing is warranted, SSB will contact the donor and request that the donor complete genetic testing to determine if the genetic change was paternally inherited. The donor is not required to complete this testing and must consent before we will coordinate sample collection. Most donors consent to additional testing as they are concerned for their donor conceived and for their own health and the health of their family members.
Communicating Family History Updates with Clients
In cases where a genetic diagnosis (pathogenic variant in a disease gene) is confirmed to be inherited from one of our sperm donors, we prioritize transparent communication. Clients who have purchased units from the donor in question can typically expect to receive the following:
- A detailed Medical Update Letter outlining the genetic finding
- Information on the implications for people conceived from the donor
- A copy of the donor’s redacted genetic results.
- Access to a complimentary consult with a certified genetic counselor to review the findings and answer questions
Even if a genetic cause for a diagnosis is not identified, donor-conceived people may still have an increased chance of developing the condition. If the chance for a significant medical diagnosis is significantly increased beyond general population chances based on the updated family history, SSB will provide a Medical Update Letter to all clients and distributors who have purchased units directly from SSB. The Medical Update Letters are currently distributed using the email addresses associated with SSB customer profiles.
Support and Counseling
We understand that receiving such information can be challenging and unexpected. Our dedicated genetic counseling team is available Monday through Friday to address any questions or concerns. We are dedicated to ensuring that all our clients are well-informed and supported regarding their families’ genetic health.
Medical Update Challenges
One of the biggest challenges to tracking and communicating medical updates is the lengthy wait times individuals may experience when securing appointments with specialists and the turnaround time for genetic testing. As a result, SSB may sometimes have limited information to share with our clients, as the affected individual may spend months or years seeking evaluations, genetic testing, and diagnoses. Medical update investigations can take months to conclude as families await appointments and results. Additionally, our information is constrained by what clients are willing to share with us and how promptly they respond to our requests for records and genetic test results. There are times when we do not have access to all the information we would like to have. This can make it challenging to determine the significance of a medical update due to the limited or ongoing nature of these investigations.
Written by: Katherine Hornberger, Certified Genetic Counselor
