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What is the Typical Process of Getting Pre-Test Genetic Counseling?

You may be wondering what to expect once you have scheduled your genetic counseling appointment. The below process outlines a typical genetic counseling session:

  1. Plan: Your genetic counselor will first review the plan for the visit. This ensures the patient and genetic counselor are aligned on the goals for the visit. This is a good time to tell your genetic counselor what you already know about genetics and genetic testing. Feel free to express your concerns, what you wish to learn at the visit, and how you are feeling. The session is for you, so do not be shy!
  2. Education: The genetic counselor will briefly review the function and importance of our DNA. They will explain how genes are inherited. They also may discuss the genetics of your specific condition. 
  3. Family History: Because genes are passed on through families, genetic counselors are interested in what diseases your family members had/have, especially if it is similar to you. They will take a 3-generation family medical history called a “pedigree”. They will ask questions about your children, siblings, parents, aunts/uncles, grandparents, and ancestry. Specifically, they are interested in what symptoms/diseases your family members had/have, cause of death, and age at death. They will analyze your family history for clues about your genetic diagnosis. This will also help them in determining the best genetic test for you.
  4. Discussion: The genetic counselor will be your guide through the decision-making process. They will discuss reasons why people would want to proceed with genetic testing and why they may not want to. The genetic counselor is an unbiased provider that and aims to give you all the facts so you can decide what’s best for you and your family. This will be very conversational, so feel free to express your thoughts and opinions. You should leave the visit feeling confident in your decision. In most cases, it is okay if you need more time to make your decision. You can re-contact the genetic counselor when you are ready. There is no pressure to test or not test.
  5. Logistics: If you have made your decision to proceed, the genetic counselor will review the process of genetic testing. You will provide a DNA sample (cheek swab, saliva, or blood) that will be shipped to a genetic testing laboratory. If you are having your genetic counseling appointment over telemedicine, the laboratory will send you a kit to your home for you to obtain your own DNA sample. You should drop your kit promptly in the mail once done using the prepaid shipping label. Genetic testing is a very specialized test. It often takes weeks to months to receive results depending on what was ordered. Your genetic counselor should be able to provide an estimated turnaround time at your pre-test visit.

If you want to learn more about the typical process of post-test genetic counseling, you can read our blog post on this topic.

Written by Michelle Rochman, MS CGC

Edited by Celeste Suart, PhD

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