Meaningful ConsentPartner(s): Jennifer Levine - College of Physicians and Surgeons
Meaningful Consent is a self-paced educational module designed to help families of children with cancer understand the real risks and benefits of whole genome sequencing for their children in order to create an ethical informed consent process. The module will cover the basics of the reasons researchers do whole genome sequencing (WGS) for patients with cancer, and the secondary risks/benefits of WGS for the child and that child's family.
The module will take approximately 20 minutes to complete and will include a video of a fictional family deciding whether to have WGS done for their child as well as an interactive risk/benefit decision balancing tool. The module will be done by parent(s) in a clinic waiting room setting and will precede a conversation with a clinician about testing. Families will have the choice to do the module in English or Spanish.Access: Private