Published: June 19, 2025
The multidisciplinary Norton Children’s Cancer Predisposition Program is designed to identify, monitor and support children who have inherited genetic conditions that increase their lifetime risk of cancer.The program established in November 2024 is a collaborative effort between Norton Children’s Cancer Institute, affiliated with the UofL School of Medicine, and Norton Children’s Genetics Center, also affiliated with the UofL School of Medicine.
The program provides early identification and long-term support for children at increased risk of developing cancer due to inherited gene mutations. These mutations can predispose patients to a wide range of cancers — from colon cancer to sarcomas, or rare pediatric tumors like pleuropulmonary blastoma associated with DICER1 mutations, for example.“Our goal is to identify inherited genes that set patients up for a potential of having a cancer, either when they’re young or later in life,” said Michael J. Ferguson, M.D., M.S., pediatric hematologist/oncologist and chief of Norton Children’s Cancer Institute. “If we can identify cancers in the early stage, we can treat them much more easily. Some patients may only need radiation; some may not even need chemotherapy.”An estimated 10% of pediatric cancer cases are related to inherited gene mutations. Although the diagnoses are rare, the implications for families can be profound. The program’s mission emphasizes early intervention to improve the likelihood of a cure.
“This is a very rare event of a rare event, but when we find it, it’s crucial that we act early,” Dr. Ferguson said. “Unfortunately, this is a lifelong issue, because they inherited the gene, and that risk doesn’t go away.”
The Norton Children’s Cancer Predisposition Programs serves patients already diagnosed with cancer that is suspected to be hereditary and patients with a known family history of inherited cancer syndromes, even if they have not been diagnosed themselves.“In those cases, it’s appropriate to test children for those genetic conditions to predict the risk for cancer and then enroll them into the program for screening before they even develop cancer or a tumor,” said Chase M. Beeman, M.S., CGC, genetic counselor with Norton Children’s Cancer Institute. “If a pediatrician uncovers a very large family history of cancer, we’re here for referrals and being able to talk through that with families.”
The Cancer Predisposition Program uses a multidisciplinary, team-based approach to support patients and families with comprehensive and thorough care. In addition to access to a genetic counselor and oncologist, patients and their families are supported by nurses and a full psychosocial care team, including psychologists, social workers and child life specialists.Dr. Ferguson emphasizes the importance of guiding families through such a difficult time with compassion and expertise.“I’m a parent myself, and if I learned this about my own child, I would be devastated. I would want to know every piece of information I could,” he said. “I would also want someone to say it’s going to be OK, and that there’s a plan in place. And with our Cancer Predisposition Program, we have a plan.”
The program is open to referrals from both within and outside the Norton Children’s system, including community pediatricians and other health care professionals.Providers should consider referring a patient to the Cancer Predisposition Program if there is:
“We’re happy to evaluate anybody who has a concern,” Chase said. “Some conditions don’t end up requiring genetic testing or referral, but that’s why we’re here — to help screen, educate and make the best plan for each family.”