Genesurance Counseling: Patient Perspectives

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.

Racial and ethnic differences in genetic counseling experiences and outcomes in the United States: A systematic review

“…Other studies were conducted in the specialties of prenatal ( n = 4) (Hoskovec et al, ; Roter et al, ; Sim, Zhou, Hom, Chen, & Sze, ; Wagner et al, ), hematology ( n = 2) (Gustafson, Gettig, Watt‐Morse, & Krishnamurti, ; Sim et al, ), cardiology ( n = 1) (Taylor & Wu, ), and neuropsychology ( n = 1) (Green et al, ). Three studies included more than one specialty area (Sim et al, ; Taylor & Wu, ; Wagner et al, ). In most of the studies, genetic counseling was provided by certified genetic counselors.…”

“…One study assessed participants’ perceptions of the genetic counselor's role in regard to health insurance. Hispanics and African Americans were significantly more likely to expect their genetic counselor to know their specific insurance plan and coverage information and provide an exact out‐of‐pocket cost than Caucasians (Wagner et al, ).…”

“…(n = 2) (Gustafson, Gettig, Watt-Morse, & Krishnamurti, 2007;Sim et al, 2011), cardiology (n = 1) (Taylor & Wu, 2009), and neuropsychology (n = 1) (Green et al, 2015). Three studies included more than one specialty area (Sim et al, 2011;Taylor & Wu, 2009;Wagner et al, 2018). In most of the studies, genetic counseling was provided by certified genetic counselors.…”

“…Studies included individuals from a variety of minority racial and ethnic backgrounds including African American and Black participants (n = 17) (Cragun et al, 2015;Gonzalez et al, 2018;Green et al, 2015;Gustafson et al, 2007;Halbert et al, 2012Halbert et al, , 2010Hoskovec et al, 2008;Hurtado-de-Mendoza et al, 2017;Jones et al, 2016;Nikolaidis et al, 2019;Pal et al, 2010;Ricker et al, 2018;Roter et al, 2008;Sheppard et al, 2013;Somers et al, 2009;Taylor & Wu, 2009;Wagner et al, 2018), Latina and Hispanic participants (n = 7) (Gammon et al, 2011;Hoskovec et al, 2008;Ricker et al, 2018;Roter et al, 2008;Sussner et al, 2010Sussner et al, , 2013Wagner et al, 2018), and Asian participants (n = 3) (Hoskovec et al, 2008;Ricker et al, 2018;Sim et al, 2011). Two studies did not categorize non-White participants into separate ethnic minority groups (Butrick et al, 2015;Peshkin et al, 2016).…”

“…Two studies did not categorize non-White participants into separate ethnic minority groups (Butrick et al, 2015;Peshkin et al, 2016). Thirteen studies looked at specific communities of one minority race or ethnicity (Cragun et al, 2015;Gonzalez et al, 2018;Gustafson et al, 2007;Halbert et al, 2012Halbert et al, , 2010Hurtado-de-Mendoza et al, 2017;Jones et al, 2016;Pal et al, 2010;Sheppard et al, 2013;Sim et al, 2011;Sussner et al, 2010Sussner et al, , 2013Taylor & Wu, 2009), while ten studies included a mix of White and non-White participants (Butrick et al, 2015;Gammon et al, 2011;Green et al, 2015;Hoskovec et al, 2008;Nikolaidis et al, 2019;Peshkin et al, 2016;Ricker et al, 2018;Roter et al, 2008;Somers et al, 2009;Wagner et al, 2018). Only two articles specifically sought to examine and compare genetic counseling differences between individuals from the majority and individuals from racial and ethnic minority backgrounds (Gammon et al, 2011;Nikolaidis et al, 2019).…”