Thesis

An updated view of individuals' attitudes, beliefs, and concerns regarding predictive testing for Huntington's disease

Huntington’s Disease (HD) is a slowly progressive neurodegenerative disease. Individuals at risk for HD may present prior to the onset of symptoms seeking predictive testing in order to determine their gene status. Previous research has explored at-risk individuals’ motivations for pursing predictive testing and its psychological consequences. However, the majority of this research predates 2010. Additionally, after literature review, there are currently no studies exploring the relationship between genetic law literacy (i.e. familiarity with the Health Information Portability and Accountability Act (HIPAA) and/or the Genetic Information Non- Discrimination Act (GINA)) and the decision to undergo predictive testing. The purpose of this study was to re-evaluate the at-risk testing population to better understand who is testing and to evaluate their attitudes, beliefs, and concerns about predictive testing. This study also explored the at-risk testing populations’ genetic law literacy and how that may potentially influence testing decisions. This study revealed a similar socio-demographic profile to previous research, and motivations for testing were also consistent with those previously described. This study also demonstrated that the best predictors for one’s testing decision are familiarity with GINA and/or HIPAA and higher education level. While only a subset of survey participants were offered anonymous testing, survey participants found the option to be of high importance. Lastly, there were mixed preferences, both in favor and not, for the [genetic] counseling component of the current predictive testing protocol.

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