Patients & Providers

Genetic Counseling 101

You may be referred to a genetic counselor by a doctor (such as an obstetrician, oncologist or medical geneticist) to discuss your family history and genetic risks, or before or after having genetic testing (or both!). While genetic counselors are not medical doctors, they are part of your healthcare team and work with you and your doctor to help you understand: your genetic risks based on your family history, your genetic risks for certain diseases (such as cancer), whether genetic testing might be right for you, and what the results of genetic tests may mean for you and your family. With expertise in counseling, genetic counselors can also provide emotional support as you make decisions and empower you with information for your overall healthcare.

What will happen during an appointment depends on what type of genetic counselor you are seeing and the reason for the appointment. You can expect that during your appointment, a genetic counselor will review your reason for referral, and determine what questions or concerns you might have. A genetic counselor will ask detailed questions about your personal and family medical history, will review what tests are available, what those tests may show, and may provide guidance to help you decide whether testing is something you would like to pursue. Most people will meet with a genetic counselor face-to-face for one or two visits, possibly more often depending on your needs and situation. You can meet with the genetic counselor alone, or with your spouse, a family member or a friend. Not only are you welcome to bring someone with you, it is encouraged. It’s always helpful to have someone else who can listen, take notes and ask questions you might not think of. The length and content of a genetic counseling appointment varies between different clinics and specialties, and depends on the reason for the appointment. During your meeting, your genetic counselor will mostly likely: take a full comprehensive family history, ask targeted questions about you and your family member’s medical history, discuss the reason for the visit and why you were referred, help you determine if testing is right for you or your family based on your needs and values, guide you through the decision making process, work with laboratories to ensure the correct testing is being performed, discuss prevention, disease management and possible next steps if test results are positive, provide emotional support during what can be a challenging and confusing time, offer resources and advocacy for more information if desired. For more information about why you might see a genetic counselor, preparing for an appointment and more, please visit NSGC's patient-focused site: https://www.aboutgeneticcounselors.org