Author ORCID Identifier
0009-0008-2777-8206
Date of Graduation
5-2025
Document Type
Thesis (MS)
Program Affiliation
Genetic Counseling
Degree Name
Masters of Science (MS)
Advisor/Committee Chair
Leslie Dunnington, MS, CGC
Committee Member
Syed S. Hashmi, MD, MPH, PhD
Committee Member
Christina Falugi, MS, CGC
Committee Member
Emile Moura Coelho da Silva, MS, CGC
Committee Member
Jordan Zeiger, MS, CGC
Committee Member
Amber McCarthy, LMSW
Abstract
Huntington’s disease (HD) is an inherited, neurodegenerative condition characterized by a clinical triad of motor, cognitive, and psychiatric symptoms. Individuals diagnosed with HD manifest characteristic symptoms of the disease including motor and cognitive changes, and they may or may not have undergone genetic testing to confirm the diagnosis. Individuals at-risk for HD are those who have not yet undergone genetic testing for HD, but have a first- or second- degree relative diagnosed with the disease. Genetic testing for HD is categorized into two forms: predictive and confirmatory. However, many individuals choose not to pursue testing due to a fear of genetic discrimination, in particular insurance discrimination. The Genetic Information Non-discrimination Act (GINA) prohibits genetic discrimination for health insurance or employment purposes, but does not apply to life, long-term care, or disability insurances. Previous studies suggest that the protections and limitations of GINA are not well understood by those at-risk and diagnosed with HD. Furthermore, there is limited information in the literature regarding the experiences of this population in pursuing classes of insurance not protected by GINA. This study aimed to identify motivating factors in pursuing life, long-term care, and disability insurance and determine barriers and facilitators in the process of obtaining these insurances. This study assessed English-speaking adults living in the U.S. who were diagnosed with or at-risk for HD. This study utilized an online, anonymous survey for which participants were recruited from various HD organizations, conferences, and local support groups. Forty-six responses were analyzed through descriptive statistics as well as Fisher’s exact test and Mann-Whitney U test in which statistical significance was set at p < 0.05. Additionally, thematic analysis was utilized for free responses from participants. Factors influencing the decision to pursue life, long-term care, or disability insurances included feeling in control/planning for the future, concern for discrimination, and securing finances. Beyond the motivating factors for pursuing insurances, the study identified three primary factors that play a role in the acceptance or rejection of an individual’s insurance application. Those factors are the completion of an additional phone interview, inclusion of HD history on an application, and disclosure status of an individual’s personal or family history of HD. While these three factors appeared to influence approval or denial of all insurance types, they were primarily associated with long-term care insurance. Clinical applications include enhancing discussion of GINA’s protections and limitations to aid obtaining these insurances as well as implementation of young adult programs to encourage earlier insurance applications.
Keywords
Huntington's disease, genetic counseling, genetic discrimination, life insurance, long-term care insurance, disability insurance