Genetic counseling offers donor conceived individuals an opportunity to explore their genetic makeup, understand potential health risks, and navigate the emotional complexities of their unique identity. The information below can help you understand genetic counseling and decide if it’s right for you.
What is a genetic counselor?
Genetic counselors are healthcare professionals that have training in medical genetics and counseling. They guide and support people who are seeking information about conditions that have a genetic or hereditary component. Genetic counselors can order genetic tests and interpret results in the context of your individual personal and family history. Typically, genetic counselors will meet with a patient once or twice for a 60-minute appointment.
What types of health conditions are genetic?
Most health conditions have a genetic component to some extent. For some conditions, genetics plays a very strong role, while in others, the genetic component is relatively weak. Some common conditions/features that genetic counselors can address include:
· Known genetic conditions, such as Huntington’s disease, sickle cell disease, or cystic fibrosis
· Cancer
· Heart Disease
· Birth defects (e.g., heart defects, cleft lip and/or palate)
· Intellectual disability
· Neurodivergence/autism spectrum disorder
· Bleeding disorders
· Mental health disorders
· Autoimmune conditions
· Hearing and/or vision loss
· Multiple miscarriages and/or stillbirth
· Common health conditions, such as type II diabetes, high blood pressure, and Alzheimer’s disease
As a donor conceived person, what can genetic counseling do for me?
Regardless of how much a person knows about their family history, genetic counseling can be useful. A genetic counselor can discuss what tests are available to you, including those that identify relatives and those that assess health risks.
How should I prepare for a genetic counseling appointment?
First, gather any family history available to you. Contact the gamete bank to request the most updated personal and family information on the donor (if available). Be sure to ask the gamete bank if any health updates were reported in individuals conceived from the donor.
- Where you can, collect information about first-, second-, and third-degree relatives including: known or suspected diagnoses or health conditions (refer to the list above); age of onset of condition/severity/lifestyle factors that may have contributed to the person’s condition; and the person’s current age/age of death/cause of death.
- Gather medical records and/or test results, when plausible. If any relatives have had genetic testing, it is helpful to bring the result report to the appointment, even if the results were negative.
- Identify your goals. Reflect on your reasons for seeking genetic counseling and outline your questions or concerns.
- Prepare emotionally. Genetic counseling sessions may evoke strong emotions, especially in people who are donor conceived. You may experience a range of feelings, including anxiety, anger, or sadness. Take time to prepare yourself emotionally and acknowledge that it’s okay to feel vulnerable during the process.
Where can I find a genetic counselor?
Your healthcare provider may be able to refer you to a genetic counselor.
Alternatively, you may use the National Society for Genetic Counselors (NSGC) search tool to find a genetic counselor in your area. Both telehealth and in-person genetic counseling options are available.
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.
Brynn Persky, MS, CGC
Katie Hornberger, MS, CGC
Heather Kamen, MS, CGC
Kathryn Lockwood, MS, CGC
Jennifer Luque, MS, CGC
Jessica Park, MS, CGC