title: Ethical and legal dilemmas arising during predictive testing for adult-onset disease: the experience of Huntington disease.
abstract: The goal of predictive testing is to modify the risk for currently healthy individuals to develop a genetic disease in the future. Such testing using polymorphic DNA markers has had major application in Huntington disease. The Canadian Collaborative Study of Predictive Testing for Huntington Disease has been guided by major principles of medical ethics, including autonomy, beneficence, confidentiality, and justice. Numerous ethical and legal dilemmas have arisen in this program, challenging these principles and occasionally casting them into conflict. The present report describes these dilemmas and offers our approach to resolving them. These issues will have relevance to predictive-testing programs for other adult-onset disorders.
authors.affiliation: Department of Medical Genetics, University of British Columbia, Vancouver, Canada.
authors.forename: M
authors.initials: M
authors.lastname: Huggins
authors.forename: M
authors.initials: M
authors.lastname: Bloch
authors.forename: S
authors.initials: S
authors.lastname: Kanani
authors.forename: O W
authors.initials: OW
authors.lastname: Quarrell
authors.forename: J
authors.initials: J
authors.lastname: Theilman
authors.forename: A
authors.initials: A
authors.lastname: Hedrick
authors.forename: B
authors.initials: B
authors.lastname: Dickens
authors.forename: A
authors.initials: A
authors.lastname: Lynch
authors.forename: M
authors.initials: M
authors.lastname: Hayden
mesh_terms: D000025:Abortion, Eugenic; D000328:Adult; D000367:Age Factors; D026686:Beneficence; D004992:Ethics, Medical; D005260:Female; D005819:Genetic Markers; D006801:Humans; D006816:Huntington Disease / Q000175:diagnosis* / Q000235:genetics; D033181:Information Dissemination; D008297:Male; D010375:Pedigree; D026684:Personal Autonomy; D012150:Polymorphism, Restriction Fragment Length; D011237:Predictive Value of Tests; D011247:Pregnancy; D018570:Risk Assessment
chemical_list: D005819:Genetic Markers