Series
The 5th ELSI Congress - ELSIcon2022
ELSIcon2022 Paper: Incorporating Patient and Relative Preferences in the Design of Traceback Cascade Testing Initiatives
Type
Conference

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.

Tags

Keywords
Live
Paper
Disclosure of genetic risk information to relatives
Genetic testing and screening

Videos in Series

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 12

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 17

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Fresh Air for Genetic Data Sharing

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 15

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Flash Session 2

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 14

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Moderated Plenary Panel

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 13

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 10

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 11

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 9

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Trainee Networking Session: Working with NHGRI

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Diversity’s Pandemic Distractions

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 6

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 5

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 8

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 7

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 1

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Flash Session 1

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 4

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 3

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 2

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: ELSI and the New Precision Stewards?

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Toward an anthropology of rare disease

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: In the Shadows of Virtual Family Trees

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: The ELSI of Pandemic Biobanking

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Whose future should we worry about?

Related Videos