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The 5th ELSI Congress - ELSIcon2022

ELSIcon2022 Paper: Why Do Patients Drop Out of Population-Based Screening for Hereditary Cancer Risk?


ELSIcon2022 • Paper • June 1, 2022

Catharine Wang, Kevin C. Cain, Elizabeth Swisher, Deborah J.Bowen, Susan Trinidad

Identifying patients who have increased genetic risk for common hereditary cancers is an important step toward reducing cancer-related disability and death. However, genetic testing rates, particularly in the absence of a cancer diagnosis, have so far been disappointing.
Preliminary data from the EDGE Study, a trial comparing in-clinic and direct-mail invitations to screen in 12 primary care clinics, suggest that drop-off occurs at multiple points throughout the process. To advance understanding of what drives patient retention or discontinuation, we are conducting semi-structured interviews with EDGE participants 18–75 who complete family-history based screening (n=10); decline screening (n=10); and are screened at high risk and either complete (n=10) or decline (n=10) genetic testing.

We are eliciting participants’ perceptions of how they were initially approached about screening/testing; their understanding of the purpose of genetic testing; and their personal decision-making process, including whether they spoke with family or others. We will ask participants to share what shaped their choice about completing the offered screening and genetic testing if screen-positive. We will also explore participants’ self-concept in relation to cancer risk and their ideas about the term “previvor” to describe individuals with elevated cancer risk.

Understanding how patients experience more robust cancer genetic risk screening regimes, as well as how particular outreach and communication strategies influence their decision-making, is critical to developing ethical and effective screening and genetic testing programs for cancer and beyond. The results of this work will inform future efforts to improve outreach and retention in primary care cancer screening programs.


Uptake of genetic testing
Genetic testing and screening

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