Preparing for a Genetic Counseling Appointment

Genetic Counseling for Hereditary Colon Cancer Syndromes

Development of this resource was generously supported by Myriad Genetics. 

What happens during a consultation with a genetic counselor?
 

Most genetic counseling is provided in-person to an individual, couple, or family. Consultations typically take place in a clinic or doctor’s office. During your consultation, the genetic counselor may:

 

  • Review your personal and family medical history, 

 

  • Identify possible genetic risks and discuss inheritance patterns,

 

  • Review appropriate testing options

 

  • Discuss prevention strategies, screening tools, disease management,

 

  • Provide genetics-related information and reliable resources,

 

  • Provide supportive counseling that may help you with topics that arose during the consultation.

 

You may speak with a genetic counselor once or work with your counselor over time. As questions about your genetic health arise, genetic counselors are available to help. It is also important to know that meeting with a genetic counselor does not always mean that you need to proceed with genetic testing or that genetic testing will be recommended. Click HERE to watch a video of a genetic counseling session. 

 

 

How can I get the most out of a genetic counseling appointment?

 

A little preparation before your appointment can help you get the most out of your genetic counseling visit. The more information you have, the more your genetic counselor can help. Before your appointment:

 

  • Ask your relatives about medical conditions in your blood relatives.

  • Who had cancer, where did it start, and at what age was it first discovered?

 

  • Who has had polyps, what type, how many, and at what age did they first show up?

 

  • Gather medical records or other documents that are available to you. The more specific and accurate the information you provide, the more precise your risk evaluation can be. The most useful documents are:

 

  • pathology reports,

 

  • cancer-related medical records,

 

  • death certificates,

 

  • and autopsy reports.

 

  • Bring a written list of questions to your appointment

 

 

Is my genetic information protected?

 

Yes. Many people are not aware that both federal and state laws are in place to protect personal genetic information. Although these laws do not address all aspects genetic privacy, they provide many important protections. Click here to read more about the Genetic Information Non-Discrimination Act (GINA) of 2008. 

 

 

Is genetic counseling covered by health insurance?

 

While genetic counseling is typically covered by medical insurance, it is important to find out about your specific health insurance coverage. You can check with your insurance directly or, if that becomes difficult, your genetic counselor can work with your insurance company to find out what services are covered. Also be mindful that the office visit with the genetic counselor and genetic testing are two separate charges that are billed to your insurance. During the genetic counseling appointment your genetic counselor will discuss insurance coverage for genetic testing.

 

 

Is genetic testing covered by health insurance?

In most cases, testing is covered. This is especially true if you have:

 

  • A history of more than 10 colon polyps,

  • A strong family history,

  • A personal history of colon cancer (especially if diagnosed under age 50),

  • Or a known gene mutation in your family.

 

Your genetic counselor will help you to pre-authorize your genetic testing after your consultation. If you have difficulty getting your insurance to cover your test, or if you do not have insurance, ask your genetic counselor to provide you with contact information for the test manufacturer. Often these companies provide patient support.

 

Learn more about the cost of genetic testing.

 

FAQs

 

1. What is genetic testing? Do I need it?

2If my doctor doesn't work with a genetic counselor, how can I get an appointment?

3. What's the best way to share my diagnosis with my relatives?

4. What advice do others have for discussing hereditary colon cancer with children?

 

 

Information used in the development of this page was sourced from the NSGC and KinTalk, a service of the University of California, San Francisco and reviewed by the Foundation's Patient Education Committee.