title: Making the decision to participate in predictive genetic testing for arrhythmogenic right ventricular cardiomyopathy.
abstract: This paper describes the experience of predictive genetic testing for Arrhythmogenic Right Ventricular Cardiomyopathy in the context of novel gene discovery. Two approaches to making the decision to engage in genetic testing were apparent: the decision to be tested either (a) develops gradually over time or (b) happens so quickly that it is felt as a "fait accompli." Six key factors that influenced the particular approach taken by the participants were identified: (1) scientific process--available and relevant predictive genetic test; (2) numerous losses or deaths within the family; (3) physical signs and symptoms of disease; (4) gender; (5) sense of relational responsibility or moral obligation to other family members; and (6) family support. This study found that at risk individuals juxtapose scientific knowledge against their experiential knowledge and the six identified factors in order to make the decision to participate in genetic testing. Recommendations include the creation of a relational space within which to provide psychological counselling and assessment for the six identified factors that shape the decision to engage in predictive genetic testing.
authors: Faculty of Nursing, Memorial University, 300 Prince Phillip Drive, St. John's, Newfoundland and Labrador, Canada, A1B 3V6, admanuel@mun.ca.
authors: April
authors: A
authors: Manuel
authors: Fern
authors: F
authors: Brunger
mesh_terms: D000328:Adult; D019571:Arrhythmogenic Right Ventricular Dysplasia / Q000175:diagnosis* / Q000523:psychology*; D001294:Attitude to Health; D003657:Decision Making; D005190:Family; D005260:Female; D005817:Genetic Counseling / Q000523:psychology*; D020022:Genetic Predisposition to Disease / Q000523:psychology*; D005820:Genetic Testing; D006801:Humans; D008297:Male