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The 5th ELSI Congress - ELSIcon2022

ELSIcon2022 Paper: Incorporating Patient and Relative Preferences in the Design of Traceback Cascade Testing Initiatives


ELSIcon2022 • Paper • June 3, 2022

Presented by: Katrina Romagnoli

Alanna Kulchak Rahm, Cabell Jonas, Tracey Klinger, Leigh Sheridan, Ilene Ladd, Zachary Salvati, Anna DiNucci, Paula Blasi, Aaron Scrol, Rachel Schwiter, Nora Henrikson

Background: People with ovarian cancer and their biological relatives can benefit from genetic testing for hereditary cancer risk, yet fewer than one-quarter of women with ovarian cancer are tested. A “traceback” cascade testing program seeks to retrospectively identify and offer testing to ovarian cancer survivors and their relatives. Feasibility and Assessment of a Cascade Traceback Screening program (FACTS) focuses on the feasibility of a traceback program with emphasis on communication strategies, the legal landscape, and an implementation science approach. We conducted a qualitative human-centered design interview study to understand the experiences and preferred communication strategies related to a traceback program.

Methods: We engaged ovarian cancer patients (n=31) and people with a family history of ovarian cancer (n=39) across a diverse sample from 3 U.S. integrated health systems. During video- and phone-based interactive interviews, participants designed their ideal experience of receiving communication about genetic testing. We conducted thematic and content data analysis using rapid framework analysis and affinity diagramming.

Results: A traceback genetic testing program was acceptable to participants. We identified 5 ideal experience phenotypes from passive to active outreach and personalized to generalized communication. We synthesized these results to develop preferred messages and design principles for traceback programs including: conducting personalized outreach with physician endorsement, providing access to clinician conversations, and using multiple modes of outreach.

Conclusions: These principles guide the integration of participants’ perspectives into the design of clinical traceback programs.


Disclosure of genetic risk information to relatives
Genetic testing and screening

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