title: Genetic testing: can it predict the lived experience of individuals and families? A personal testimony.
abstract: An individual's and family's experience with a genetic disease is too complex and diverse to be totally predicted using genetic testing. Stigmatization and discrimination of gene carriers can occur if society chooses to utilize genetic technology to eliminate 'disease and disability' without accepting human variation and devoting any possible efforts for ameliorating the life of individuals faced with disabilities. In this paper I use Friedreich's ataxia (FA) to illustrate some ways in which a disease experience can differ from what is expected from textbook descriptions of a given condition. I describe the expected medical characteristics with FA and some of my own personal experience with the disease as well as that of my family.
authors.affiliation: Genetics Department, Stanford University, Stanford, CA 94305-5120, USA.
authors.forename: T M
authors.initials: TM
authors.lastname: Powell