Genetic Conditions, Experiences of Families during the Prediagnosis and Diagnosis Phases of

Genetic testing is both an individual and a family experience. Even though genetic testing is performed on genetic material obtained from individuals, the decision of a family member to undergo genetic testing, as well as the family member's test result, can have profound and long-term implications on the immediate and extended family. For example, if a young adult male with a family history of Huntington's disease (a progressive neurodegenerative disorder inherited in an autosomal dominant pattern) decides to undergo predictive or presymptomatic testing (testing used to detect gene mutations associated with diseases that typically appear later in life), even though his parents and siblings have asked him not to, his decision will most likely have a powerful impact that will reverberate throughout both his immediate ...