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Together is a new resource for anyone affected by pediatric cancer - patients and their parents, family members, and friends.

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Genetic Counselors and Understanding Risk

After learning their child has cancer, it’s natural for parents to ask how and why this disease has happened. Many people wonder if the answer lies in their family tree. Did I pass on a genetic mistake to my child that caused the cancer to develop? Does cancer run in my family?

A genetic counselor, a health care professional with advanced training and experience in medical genetics and counseling, can help families find answers. Counselors are a part of the medical team and work closely with doctors and other providers.

brightly colored sculpture of DNA model with children playing on the double helix in a winter landscape

If you learn that there is a history of cancer in your family, discuss this information with your physician and perhaps seek the guidance of a genetics counselor.

Counselors can work with people to review their family’s medical history and discuss specific hereditary conditions that can increase the risk for cancer. Certain patterns in a family—such as the types of cancer that develop, other non-cancer conditions that are seen, and the ages at which cancer develops—may suggest the presence of a hereditary cancer syndrome. Other people may carry a genetic mistake but have no noticeable symptoms.

A 2015 study conducted by the St. Jude Children’s Research Hospital – Washington University Pediatric Cancer Genome Project reported that 8.5 percent of childhood cancers develop because of a genetic mutation inherited from a parent.

There are laboratory tests that can detect genetic mutations that can lead to cancer. If families want to pursue genetic testing for the patient or themselves, the counselor can discuss which genetic tests may or may not be right for them, what the tests may or may not reveal, and can arrange the testing. When the test results are ready, the counselor will explain them and talk with families about whether other family members are at risk, including future children.

Counselors can discuss genetic testing for other family members, if needed. If testing reveals family members have a genetic predisposition for cancer, the natural question is, "What does this mean for my family?" The genetic counselor will be there to educate family members and support them emotionally.

Counselors will provide information so family members can make informed choices about their medical care. Having a predisposition to cancer does not mean the person will develop it. However, the counselor will share what screening tests are available. Patients may want to have regular screening tests for cancers, so any disease will be caught earlier when it is more likely to be treated successfully. Also, families may want to consider other medical options to help prevent cancers from forming.

Genetic counselors can inform patients about ways to get involved in research if they are interested. Counselors can also help families understand Genetic Information Non-Discrimination Act, the federal law that protects against discrimination based on genetic information. They can serve as patient advocates and refer individuals and families to community or state support services.

Reviewed: June 2018