What to expect when meeting with a genetic counselor  

What is genetic counseling? 

Genetic counseling is a process where a trained healthcare professional helps a person or family understand the medical, psychological, and familial implications of hereditary contributions to disease (those passed from parent to child). 

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This process uses a patient's family and medical history combined with counseling to:

• Assess the chance of disease
• Educate about inheritance, testing, management, prevention, resources, and research
• Promote informed decisions about health and adaptation to the genetic risk or condition

What do genetic counselors do? 

Genetic counselors are health professionals with specialized training in medical genetics and counseling. Cancer genetic counselors evaluate the likelihood of a hereditary cancer risk in families and provide information about genetic testing and cancer screening options. They assist with making decisions about genetic testing and serve as a resource for you and your family to understand how genetics contributes to the cancers in your family.

What happens during a genetic counseling appointment? 

During the 90-minute consultation, you can expect the following topics to be covered:

• Your personal medical history and cancer screening history
• Your family history of cancer. The genetic counselor will draw your family tree and will include at least three generations. He or she will document which family members had cancer, what type of cancer they had, and their age at diagnosis.
• Basic genetic concepts and how they relate to sporadic and hereditary cancer
• The possibility of increased cancer risk in you and your family due to a genetic cause
• Cancer diagnosis and management options, including a review of available options to identify early-stage cancer or reduce the risk of cancer through surveillance, screening, and prevention, as well as the limitations of these options
• The benefits and limitations of genetic testing and how the results could affect medical management for you and your family
• A strategy for genetic testing that best meets the needs of you and your family
• Current laws regarding the privacy and confidentiality of genetic information
• The possible emotional, psychological, and social implications of knowing the results of a genetic test

If you meet criteria for genetic testing and are interested moving forward, a blood or saliva sample can be collected at the end of the appointment. Your genetic counselor will coordinate your genetic testing.

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What happens after your visit?

Your genetic counselor will give you written information from your visit. Typically, a copy of the clinic note will be sent to the doctor who referred you for genetic counseling.

Your genetic counselor may provide you with additional written information relevant to your family history and genetic testing result if applicable.

In some cases, you or other family members may qualify for research or screening studies. If this is the case, your genetic counselor can provide you additional information and help make the necessary arrangements.

If you pursue genetic testing, your genetic counselor will review your test results and their meaning according to the follow up plan discussed during the appointment. Your counselor will continue to be a resource for you and your family after your visit. It is important to call your genetic counselor if you have any questions or if there are changes to the cancer history in your family.

How should I prepare for my genetic counseling appointment?

Although it is not possible for everyone, knowing your family history and your medical history is the best way to prepare for your appointment.

Information that is helpful and may be requested by the cancer center includes:

• Your medical records from your previous or current doctors from outside facilities, including any pathology reports (laboratory test results) from any biopsies, surgery, or standard screening examinations (such as colonoscopy), if applicable
• Current age or age (and cause) of death for each of your family members (parents, brothers, sisters, children, aunts, uncles, nieces, nephews, grandparents, and cousins)
• The specific type(s) of cancer that your family members had and the age at which they were diagnosed. Pathology reports from their doctors are often helpful
• Previous genetic test results (personal and/or family history)

You may receive an email asking you questions about your personal and family history. Completing this survey before your appointment will help the genetic counselors better prepare for your appointment.

Adapted from the American Society of Clinical Oncology (www.asco.org)