Poster 3: An Examination of Actual and Potential Discrimination of Individuals at Risk of Huntington's Disease: An Analysis of the RESPOND-HD Data from Australia (Site 144)

Abstract

The advent of predictive HD gene testing has raised many unique issues, including the confidentiality of genetic information and the potential for social stigmatization and discrimination. There are also philosophical challenges regarding identity, responsibility, and what it means to live with genetic information that predicts future health status. Some choose not to have predictive testing due to these issues. We examined, as part of RESPOND-HD, the experiences of Australian individuals with a family history of HD and/or who tested for the HD gene in order to evaluate the related social, ethical, and legal issues. Fifty-four participants so far have completed the RESPOND-HD survey at our S..