title: Ethical dilemmas in testing for late onset conditions: reactions to testing and perceived impact on other family members.
abstract: This paper examines some of the ethical dilemmas that arise when testing for the late onset, untreatable condition of Huntington disease (HD) specifically now that technology allows us to test younger generations of the family for the mutant gene. Drawing on interview data from families with Huntington disease, the reactions to testing and perceived impact on other family members are considered. These are discussed in the light of the possible lowering of the age of test applicants. This potentially raises problems for a younger generation as they are confronted with reproductive decisions that the older generation did not have to face. It also means that individuals have the prospect of living with knowledge of a future illness for much longer.
authors.affiliation: Centre for Family Research, University of Cambridge, Cambridge CB2 3RF, United Kingdom. ecc22@cam.ac.uk
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Chapman
mesh_terms: D000367:Age Factors; D017668:Age of Onset; D003657:Decision Making; D005190:Family; D005193:Family Planning Services; D005817:Genetic Counseling; D005820:Genetic Testing / Q000523:psychology*; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D006816:Huntington Disease / Q000235:genetics*; D007407:Interviews as Topic; D009042:Motivation; D011296:Prenatal Diagnosis; D012098:Reproduction / Q000941:ethics; D012189:Retrospective Studies