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Using a donor gamete (egg, sperm, or embryo) can be overwhelming. Four years after my husband and I decided to adopt two embryos, one of which is now our three-year-old son, I still have questions. Maybe some would have been answerable. Perhaps they were, and still are, unknown to the genetic donors. I don’t know.
The path to parenthood has many possible roads, and, for many of us, a lot of them are not clearly marked. We often go into this process confused, scared, uneducated, and with far more questions than answers. For me, the biggest part was not knowing what I didn’t know — and not knowing if what I didn’t know was something I should, or could, ask.
Four years later, I advise prospective donor recipients to keep a running list of questions. This can be on your phone or in a notebook. Any time something occurs to you, jot it down. There are a few medical questions I wish I had more insight into, but the genetic testing that is now available was not an option for me at the time. Other testing insights, like miscarriage risk, would have been extremely helpful to us early on in our fertility process.
Of course, there are other things I’m curious about: What were the donors like in school? Are they extroverted or introverted? Do their family or close loved ones say they have any particular quirks or idiosyncrasies that they love about them?
I see a lot about my son from my husband and me. But, there are some things that I wonder: Where did that trait come from? It’s an unknowable condition for us. And it doesn’t really matter. He is our son, and when we ask if he is a dinosaur or Spider-Man, he tells us proudly, “I am [name].”
Still, there are questions to consider asking a genetic counselor.
Thankfully, for the essential questions we want to know the answers to as we seek potential donor options, I sat down with Jennifer Eccles, Licensed Certified Genetic Counselor, Senior Director and Head of Clinical Genetics, and Deidre A. Leahy, Licensed Certified Genetic Counselor, from LifeView Testing Powered By Genomic Prediction who offered their expert opinions.
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1. What type of family history has been obtained from the donor?
Understanding the qualifications and background of a potential donor can provide you with important information about their health and genetic history, which is why it's important to find out how thoroughly the donor was screened. A more detailed family history is critical to identifying any potential risks associated with using a donor's genetic material. For example, was a three-generation pedigree obtained by a medical professional, or did the donor simply answer a brief questionnaire? The answer to this question matters more than you may think.
2. Has the donor undergone comprehensive genetic screening?
Knowing which genetic tests were conducted on a potential donor can help determine the likelihood of inherited conditions or genetic disorders being passed on to the child. Be sure to ask about expanded carrier screening, which can be used to identify individuals who are carriers of common and not-so-common recessive genetic conditions. If both the egg source and sperm source are carriers of the same genetic condition(s), there is a 25% chance of having an affected child. That's why it's essential to choose a donor who, ideally, is not a carrier of the same conditions that you are a carrier of.
3. What was NOT included in the donor's genetic screening? Did the donor undergo routine karyotypes to rule out chromosome rearrangements that could increase the risk of aneuploidy in embryos?
Often, intended parents are under the impression that donors are screened for "everything." However, more advanced testing for karyotypes and carrier screening for hereditary cancer syndromes are often not included on typical genetic screening panels. If you want to get the full picture, make sure to ask what is and isn't included so that once a donor is selected and if something comes up, it can be addressed correctly.
4. How easy will it be to get additional DNA from this donor? Can you provide information on the anonymity or contact with the donor?
Genetic issues may arise during the IVF process or post-conception, and further testing may be needed. If the donor is no longer active, this may present a barrier to getting necessary answers.
In addition, if you have any specific preferences regarding anonymity or future contact with the donor, it's crucial to discuss this with the genetic counselor. They can provide information on the policies and procedures regarding anonymity, donor identification, and the potential for future contact.
5. What if I pick a donor known to be positive for a genetic condition? What do I do next?
There are several reasons why a donor would be selected with a known risk of a genetic condition. During IVF, preimplantation genetic testing may be available to test embryos for known monogenic or single gene disorders prior to transfer. During pregnancy, diagnostic testing may also be available through tests such as chorionic villi sampling or amniocentesis. You can speak to a genetic counselor to learn more about these testing options, and how to avoid potentially passing the condition on to your future child(ren).
Remember: The science of genetic testing is constantly evolving. To stay in the know, join LifeView Testing Powered By Genomic Prediction’s patient mailing list here.
Kristin Diversi is a writer and versatile creative. She is passionate about reproductive health and justice and lives in Longmont, Colorado, with her husband and their son.