Chronic Kidney Disease
Helping families understand genetic test results
Project Background
With the increased availability of personalized genetic test results to study participants, researchers from the Chronic Kidney Disease in Children (CKiD) Study wanted to understand family perspectives receiving information about variants of uncertain significance.
Our Work
We developed two videos to explain the difference between pathogenic and uncertain genetic test results. The visuals illustrated the steps that families might follow after they get an uncertain genetic test result and how the results relate to a patient’s medical care.
Results
The videos are currently being used by bioethics researchers.
