Like assembling an intricate puzzle, St. Jude genetic counselors piece together a patient’s family tree, physical exam and medical history to determine a patient’s likelihood of having a predisposition to cancer or a hematologic disease.
The hospital’s six licensed genetic counselors spend much of their time examining the past, but their work has a potentially widespread impact on the future of treatment and care.
“We analyze this information and put those pieces together to think about which genes could be explaining this personal and family history of cancer,” said Genetic Counselor Kayla Hamilton. “We discuss options for genetic testing and help families think about the impact that testing could have on their child and their whole family.”
An estimated 5 to 10 percent of children with cancer have the disease due to a genetic condition. By identifying these rare genes, clinicians and researchers can learn more about why tumors form and the best methods of treating them.
In 2014, Kim Nichols, MD, came to St. Jude to launch and direct the Cancer Predisposition Division to expand research efforts, identify children with hereditary forms of cancer and to coordinate their treatment. Genetic counselors serve as the gateway for these efforts through initial 90-minute consultations with patients and families. All new oncology patients at St. Jude are offered the option of a consultation.
St. Jude recently hired a Hematology genetic counselor, Sara Lewis, to work with patients and families who may be at risk for hereditary non-malignant hematologic conditions.
Counselors focus on the whole family, working with patients, siblings and parents to determine if testing is needed and what risks and benefits are involved. There are several different tests ranging from karyotypes to DNA sequencing, many of which are conducted at St. Jude. After testing, counselors review and explain the results to families.
They also help families obtain appropriate medical care and provide mental, emotional, social and spiritual support when a genetic diagnosis is made.
Counselors collaborate with clinical staff members and are widely involved in the institution’s various clinical and research genomics efforts.
“Our field is new and still evolving,” said Courtney Lewis, who works with St. Jude LIFE participants. “From a research perspective, St. Jude allows us to study and analyze important genetic questions that haven’t been previously addressed in a pediatric cancer setting.”
As genetic testing opportunities expand and technology develops, genetic counselors will continue to play an important role in finding the underlying causes of cancer and other diseases in families.
The National Society of Genetic Counselors recognizes November 9 as Genetic Counselor Awareness Day. This year is the inaugural observation.