Date of Award
2025
Document Type
Open Access Thesis
Department
Genetic Counseling
First Advisor
Amy Wardyn
Abstract
Since the enactment of the Genetic Information Non-Discrimination Act (GINA) in 2008, genetics providers have been incorporating conversations about GINA in pre-test counseling. There is currently limited evidence of the effects of personal or family histories of cardiomyopathy or aortopathy and associated genetic testing on patients seeking insurance policies not protected by GINA, including life, long term care, and disability insurance. This study aimed to determine whether individuals with a personal or family history of cardiomyopathy or aortopathy are having conversations about future insurability with their healthcare providers and how they perceive their ability to get these insurances when deciding to pursue genetic testing. This study included an original online survey sent to individuals through various cardiomyopathy and aortopathy organizations and websites that consisted of yes or no, Likert-style items, multiple choice, and open-ended questions. A total of 108 responses were analyzed using Chi square analysis to investigate the relationship between factors considered prior to genetic testing and the decision to get genetic testing and to elicit beliefs about the relationship between genetic testing and attainment of life, long term care, and disability insurance. Most participants were European/white women (82.8%, 77.8%), most had a personal or family history of cardiomyopathy (53.8%), and others had a personal or family history of aortopathy (41.7%). More participants had conversations about future insurability prior to pursuing genetic testing when they had pre-test counseling with a genetics or healthcare provider compared to when they did not have pre-test counseling with a provider (41.4%, 19.0%). Having these pre-test conversations was not statistically significant when compared to the participants’ perceived level of importance of future insurability (p = .100). The level of importance of future insurability was also not statistically significant compared to the decision to pursue genetic testing. In their current form, conversations with genetics or other healthcare providers about the limitations of GINA do not appear to be significantly impacting patient decision-making regarding genetic testing. More data is needed to determine if genetic testing impacts individuals’ insurability to continue to better inform how healthcare providers discuss GINA.
Rights
© 2025, Julia Schoeni
Recommended Citation
Schoeni, J.(2025). The Relationship Between Cardiac Patient Beliefs and Experiences with Insurability and Their Decisions on Whether or Not to Pursue Genetic Testing. (Master's thesis). Retrieved from https://scholarcommons.sc.edu/etd/8322