Ovarian cancer is the deadliest gynecologic cancer, and the fifth leading cause of cancer death in US women. Despite guidelines recommending genetic testing for all women with ovarian cancer, fewer than one-quarter are tested. This project will focus on the feasibility and options for implementation of a Traceback cascade screening program through methods, culturally- appropriate language, and legal issues related to identifying probands and family members and successfully facilitating genetic testing in healthcare systems with currently available resources. Our Long-term goal is to create an effective Traceback program that is practical and sustainable in the real-world setting. The main objective of this project is to determine the acceptability, feasibility, and effectiveness of a Traceback cascade screening program in multiple populations and healthcare systems that will guide broader implementation. Our research question is in what organizational contexts and populations a Traceback program for proband identification and cascade screening of family members can be implemented, what would successful outcomes be for such programs, and what are the contextual, logistical, and legal barriers to be addressed? Our specific aims are to: 1) to explore a legal solution based on the privacy laws of all 50 states that may hinder or facilitate genetic testing of family members; 2) illuminate culturally appropriate language and communication strategies to inform women with ovarian cancer and their family members about the availability of genetic testing; 3) describe the effectiveness and feasibility of a Traceback cascade screening program in three healthcare systems; and 4) to explore the implementation outcomes related to a Traceback cascade program to provide guidance for broader dissemination of such a program.
Uptake of genetic testing in ovarian cancer patients and their family members is low. Research is needed to determine the feasibility of a program for identifying and testing previously diagnosed ovarian cancer patients in order to facilitate genetic testing in their at-risk relatives. This study will determine the feasibility of a Traceback cascade screening program and provide information on legal barriers and culturally-appropriate language and communication strategies to guide broader implementation.
