Abstract
Genetic counselors (GCs) have reported an increase in discussion of insurance-related, or “genesurance,” topics during genetic counseling sessions. Despite increasing frequency, there have been no studies examining patient expectations of GCs in these discussions. This study aimed to explore patient expectations of GCs in these discussions, as well as examine factors that may impact expectations. A 38-item survey was administered prior to patients receiving prenatal or cancer genetic counseling at 11 clinic sites across UTHealth, Baylor College of Medicine, and Sanford Health, with 360 responses analyzed. Key variables were analyzed using descriptive statistics, chi-square analysis, and multivariate logistic regression to assess associations between factors and control for potential confounders. Over 75% of patients expected GCs to discuss genesurance topics during a genetic counseling session. The majority of patients (78%) expected GCs to provide an estimated out-of-pocket cost, know if a test is a covered benefit (77%), and provide referral information for further questions (76%). Two additional expectations, considered to be unrealistic in most clinical settings, included expecting GCs to know the patient’s specific insurance plan and coverage information (57%) and provide an exact out-of-pocket cost (41%). Ethnicity was the only significant predictor of response for these two expectations, as African Americans and Hispanics were more likely than Caucasians to have these beliefs. While the patient participants felt that GCs were primarily responsible for initiating these conversations, they also reported a personal sense of responsibility for raising questions. This study demonstrates that patients may expect GCs to address genesurance topics in a genetic counseling session, with specific expectations about the cost and coverage of genetic tests. Further studies will establish the most effective way to communicate this information to patients and examine whether and where within the scope of GC practice, genesurance discussions fall.
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Acknowledgements
This study was completed as a part of a thesis project at the University of Texas MDAnderson Cancer Center UTHealth Graduate School of Biomedical Sciences.
Funding
The authors would like to thank the Texas Society of Genetic Counselors (TSGC) and the National Society of Genetic Counselors (NSGC) Education Special Interest Group for their financial support of this project.
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Chelsea Wagner, Lauren Murphy, Jacqueline Harkenrider, Sandra Darilek, Eleazar Soto-Torres, Quinn Stein, and Jennifer Hoskovec declare that they have no conflict of interest.
Human Studies and Informed Consent
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.
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No animal studies were carried out by the authors for this article.
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Wagner, C., Murphy, L., Harkenrider, J. et al. Genesurance Counseling: Patient Perspectives. J Genet Counsel 27, 814–822 (2018). https://doi.org/10.1007/s10897-018-0211-2
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DOI: https://doi.org/10.1007/s10897-018-0211-2