Author ORCID Identifier


Date of Graduation


Document Type

Thesis (MS)

Program Affiliation

Genetic Counseling

Degree Name

Masters of Science (MS)

Advisor/Committee Chair

Jennifer Hoskovec, MS, CGC

Committee Member

Lauren Murphy, MS, CGC

Committee Member

Jacqueline Harkenrider, MS, CGC

Committee Member

Sandra Darilek, MS, CGC

Committee Member

Eleazar Soto-Torres, MD, MFM

Committee Member

Quinn Stein, MS, CGC


Genetic counselors (GCs) have recently reported an increase in the discussion of insurance-related, or “genesurance,” topics during genetic counseling sessions. Despite increasing frequency, little knowledge exists about genesurance conversations and patient expectations. This study aimed to assess patient expectations of GCs in genesurance discussions and evaluate if health insurance literacy impacted these expectations. A 38-item survey, including a validated tool to assess health insurance literacy (HIL) was administered prior to patients receiving prenatal or cancer genetic counseling at three participating institutions. A total of 360 responses were analyzed. Key variables were compared using chi-square analysis and multivariable logistic regression was used to assess associations between factors, while controlling for potential confounders. Over 80% of patients expected genesurance topics to be discussed during a genetic counseling session with a majority expecting their GC to: provide them an estimated out-of-pocket (OOP) cost for a genetic test (83%), know if a genetic test is a covered benefit (82%), and provide referral information if they have additional questions (81%). In general, HIL did not impact patient expectations of GCs. This study provides evidence that patients expect their GCs to be discussing genesurance topics and further delineates their specific expectations. Further studies will be help to establish the most effective way to communicate this information to patients, evaluate current genetic counseling training programs, and assist in the development of further specialized Health Insurance Literacy assessment tools.


genesurance counseling, genetic counseling, efficiency, health insurance literacy



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