One in ten pediatric cancers are caused by genetic changes that are passed down in families. Recognizing that a child’s cancer is caused by a familial genetic chance is critical: if a family and their doctors can recognize that risk for developing cancer is being passed down in a family, they can take steps to prevent future cancers in the child and their family members. They can do things like:

- Periodically perform specialized blood tests or imaging studies to recognize cancer as early as possible
- Start mammograms and colonoscopies at an earlier age
- Perform surgeries to remove parts of the body that are very likely to develop cancer later in life.

However, most families with inherited cancer risk never have a chance to recognize their risk. Insurance typically does not cover genetic testing. Project Inherited Cancer Risk is a partnership among Norton Children’s Hospital (NCH), the University of Louisville, Kentucky Children’s Hospital (KCH), and the University of Kentucky to make genetic testing for cancer risk available to every child in Kentucky who develops cancer. The goals of Project Inherited Cancer Risk are:

1. To ensure every child in Kentucky who develops cancer will have a chance to receive genetic testing
2. To form a joint NCH-KCH Molecular Tumor Board to review genetic results and develop recommendations for families and their doctors
3. To study how genetic changes contribute to pediatric cancer in Kentucky. For example, Kentucky has an unusually high rate of pediatric brain cancer. Could genetic changes be responsible for that pattern?

The state’s Pediatric Cancer Research Trust Fund will support the actual cost of genetic testing, but we are depending on community partners to support other important dimensions of this project.

 

A partnership with Kentuckiana Friends of V would allow us to hire a dedicated genetic counselor. This partnership would provide protected time for the genetic counselor to work with the families of children with cancer to identify ways they could use their genetic test results from Project Inherited Cancer Risk to prevent future cancers in their children and in other family members.