Genetic counseling

Genetics can be a complex topic. Before and after genetic testing at City of Hope, you may choose to have a counseling session to help you navigate the science of genetics and what the test results may mean for you and your family. Physicians or other medical providers may refer people for be genetic counseling and to discuss the option of genetic testing if they have personal or family histories in which:

• Multiple relatives have had cancer.
• Multiple relatives on the same side of the family have had the same or related types of cancer (for example, colon and uterine cancers may be related to the same inherited cause).
• Ovarian or pancreatic cancer has been diagnosed, both of which may be linked with inherited cancer risks.
• More than one type of cancer has been diagnosed in the same individual.
• Cancers were diagnosed at earlier-than-average ages, typically defined as 50 or younger.
• There’s a generation-to-generation pattern of cancer in the family.
• A family member has been found to have a genetic mutation that increases cancer risk.
• The family has Ashkenazi Jewish (Eastern European) heritage with indications for breast, ovarian or pancreatic cancer.

Participating in an introductory counseling session does not obligate you to have genetic testing. If you wish to pursue genetic counseling and testing once you leave the hospital, we offer telegenetics in most areas or are happy to see you at your next visit to our center.

Benefits and risks of genetic testing

Genetic testing poses psychological benefits and risks. A negative result can bring a sense of relief and reduce some of your worry and anxiety. It may also eliminate the need for more frequent checkups and tests that are routine in individuals with a high risk of cancer.

Cancer genetic counseling is a service provided by health care professionals with expertise in medical genetics and counseling. During a counseling session, genetic counselors will:

• Evaluate your personal and family cancer histories
• Assess your inherited cancer risk 
• Simplify the concepts of genetics and hereditary cancer risks
• Offer support to individuals and families at risk for cancer
• Empower you to make informed choices
• Address your questions and concerns

It’s important to remember that testing positive for a gene mutation does not necessarily meant that you will develop cancer. Some people with these results never get cancer.

Learn more about genetic testing

What is a genetic counselor?

Genetic counselors are health care professionals who help people understand the inherited basis for certain health conditions. They review the options for and promote informed decision-making about genetic testing, and explore how genetic test results may be used to guide medical care.

What kind of training do genetic counselors have?

Although they are not physicians, genetic counselors may be a central part of a person’s medical team. Their credentials include a master’s degree in genetic counseling or medical genetics, certification by the American Board of Genetic Counseling (ABGC), and licensure in one ore more (sometimes many) states. 

With expansive training in medical genetics, genetic counselors are an important point of reference for people interested in learning about inherited risks for health conditions for themselves and their families. Genetic counselors are experienced in assessing risks in families, coordinating and interpreting genetic testing results and offering psychological and emotional support. 

Areas of specialization may include: 

• Cardiology
• Neurology
• Oncology
• Ophthalmology
• Pediatrics
• Prenatal
• Psychiatry

When would someone meet with a genetic counselor?

People may meet with a genetic counselor if they have questions or concerns about their personal or family histories of cancer.  Physicians or other medical providers may refer people for be genetic counseling and to discuss the option of genetic testing if they have personal or family histories in which:

• Multiple relatives have had cancer.
• Multiple relatives on the same side of the family have had  the same or related types of cancer (for example, colon and uterine cancers may be related to the same inherited cause).
• Ovarian or pancreatic cancer has been diagnosed, both of which may be linked with inherited cancer risks.
• More than one type  of cancer has been diagnosed in the same individual.
• Cancers were diagnosed at earlier-than-average ages, typically defined as 50 or younger.
• There’s a generation-to-generation pattern of cancer in the family.
• A family member has been found to have a genetic mutation that increases cancer risk.
• The family has Ashkenazi Jewish (Eastern European) heritage with a history of breast, ovarian or pancreatic cancer.

What to expect during a visit with a genetic counselor in oncology?

About 5 to 10 percent of all cancers are estimated to be caused by an inherited risk for cancer, according to the American Cancer Society (ACS). Genetic counseling and testing can help people understand their risks for developing cancer. These tools may also help them learn how to manage their risks with personalized cancer screening and identify steps they may take to reduce their cancer risks.

Genetic counselors perform risk assessments by asking questions about personal and family histories to create a family tree that goes back three to four generations. This information helps assess the chances of an inherited risk for cancer in a family and determine whether medical criteria for genetic testing are met. Information is provided about the link between cancer and genetics and inherited cancer conditions. The counselor also reviews the availability of and considerations for genetic testing.

As outlined by the ACS, the National Society of Genetic Counselors (NSGC) and other organizations, genetic counselors help people consider how the results of genetic testing will affect them and their families. Prior to genetic testing, and as part of the genetic counseling session, the counselor reviews and discusses these topics:

• The purpose of genetic testing
• What conditions the genetic test will evaluate
• Possible genetic test results
• Test accuracy and reasons why people may have or decline testing
• Alternatives to genetic testing
• How genetic test results may impact medical care, including cancer screening, options to reduce cancer risks and cancer treatments
• Possible decision-making based on genetic test results
• Laws that pertain to the privacy of genetic information and genetic discrimination
• Considerations about how genetic test results may help further research
• Additional supportive counseling and other available service

Ultimately, genetic counselors provide a supportive environment to empower people to learn about genetics and the risks for health conditions and make informed decisions about genetic testing.

How to find a genetic counselor

A doctor or insurance provider may provide information on genetic counselors in the area. Additionally, the following groups offer online resources:

• National Society of Genetic Counselors (NSGC)
• American College of Medical Genetics and Genomics (ACMG)