You’ve invested the time, money, and the emotional energy into the process of selecting a donor, and you now have a child. But is your journey with the gamete bank over? Possibly not. Here’s why gamete banks might need to hear from you after you are finished with donor selection.
Humans age and things happen. Children are diagnosed with health conditions every day. For most of us, routine conditions are just that—routine. A round of antibiotics, rest and fluids, and time itself are curative for things like bacterial infections, the flu, and insect bites. Some health conditions, though, are more serious and require invasive procedures or long-term management.
Within donor conception, in the event that you have a(n) embryo, pregnancy, or child with a diagnosed health condition, genetic or not, the gamete bank should be informed. This isn’t intended to invade your privacy, but rather to help manage donor inventory, detect any patterns that may suggest an increased risk to other donor conceived persons (DCP) from that donor, and convey relevant updates to other families that may change clinical management for their own pregnancies or children.
Wouldn’t this have come up already?
If you are a parent of a DCP with a health condition, you may wonder how this could have happened. You may be asking, “Shouldn’t this have already been tested?” The answer is complicated. During gamete donor program participation, prospective donors undergo several stages of evaluations. These may include a physical exam, blood testing, STI screening, family history analysis, and genetic testing. This information is compiled and made available to clients who are searching for a donor. The results of genetic testing, for example, may lead an intended parent (IP) to choose one donor over another. The bank is using the data collected from evaluations to determine the donor’s suitability for the program. But it is also helpful to look back on a health condition if it is reported in a DCP.
Unfortunately, there is no way to screen a donor for every possible health outcome or risk to a donor conceived offspring. This is not unique to donor gamete conception. There is no way to screen anyone for all possible health risks (inherited or otherwise) before they contribute genetically to a pregnancy.
So how do these things happen?
Genetic conditions can be inherited from a gamete contributor (donor) or occur spontaneously. When a person is diagnosed with a genetic condition and their diagnosis is confirmed with genetic testing, the genetic parents may be offered testing to see if the change was inherited or not. In some cases, a genetic parent has the same variant but has no (or minimal) symptoms. When both genetic parents are negative, it’s considered a de novo, or new mutation. The gamete bank will help you determine if donor testing is a possibility for your specific situation.
Many conditions are multifactorial, meaning the cause is a combination of factors such as genetics, environment, and exposures. Congenital heart disease (a heart defect) can be due to exposures in utero, maternal age, and family history. Autism, though the cause is largely unknown, has some known genetic contribution from specific genes and/or genetic syndromes. While we can look at patterns in a family history to assess possible increased risks, multifactorial conditions cannot be predicted in future generations.
Should I call the gamete bank and inform them?
Within donor conception, if you have a(n) embryo, pregnancy, or child with a health condition, please share this information with the gamete bank. It may have implications for other families, or even the donor themselves. The bank may also be able to assist with coordinating a donor history update and/or donor testing, as appropriate, to assist with your own child’s diagnosis and management.
What will happen when I call?
The gamete bank will likely record the health condition(s) into an internal database. In most cases, the bank will conduct an internal review by looking at previous health conditions reported (if any) and the donor’s personal and family history. If multiple DCP from the same donor are found to have a similar condition, that may suggest an inherited component (identifiable or not) from the donor. This does not apply to just inherited conditions. If there are multiple DCP with an autoimmune condition, high blood pressure, or learning disorders (things that are multifactorial and not solely due to a genetic mutation), the gamete bank may share this information with other families who used the same donor in case it may inform their own child’s clinical management.
If your pregnancy, child, or embryo has a genetic finding, the bank may ask for a copy of the records. This helps with the investigation and determining whether donor testing is possible and/or appropriate.
Who can I speak to if I have questions?
If a bank has a genetics team, or a genetic counselor on staff, ask to speak with them. If you’re not sure, just ask the person who answers the phone how to inform the bank about a health condition in your DCP. They will be able to direct you to the right person or team.
Authored by The Donor Gamete Genetic Counselors: Kathryn Lockwood, MS, CGC; Katie Hornberger, MS, CGC; Heather Kamen, MS, CGC; Jennifer Luque, MS, CGC; Jessica Park, MS, CGC; Brynn Persky, MS, CGC
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.