title: Disclosing Huntington's Genetic Testing Results in the Context of Intellectual Disability and Guardianship: Using the Family Illness Narrative to Guide the Flow of Information.
abstract: A diagnosis of Huntington's disease has broad social, vocational, reproductive and psychological implications. The ability to accurately diagnose the illness via genetic testing is not new. However, given a persistent lack of robustly effective interventions, it remains an area of ethical concern. The difficulty is compounded in cases of intellectual disability. This paper presents a case of genetic testing for Huntington's disease conducted on a patient with intellectual disability with guardian consent, but without the patient's direct knowledge and how the family illness narrative and psychiatric care were employed in the eventual disclosure of the patient's diagnosis and subsequent management.
authors.affiliation: Department of Psychiatry and Behavioral Sciences, Boise Veterans Administration Medical Center, University of Washington, 500 W Fort St, Boise, ID, 83702, USA. mark.warren@va.gov.
authors.forename: Mark B
authors.initials: MB
authors.lastname: Warren
authors.affiliation: Department of Psychiatry and Psychology, Mayo Clinic, Rochester, MN, USA.
authors.forename: Kathryn M
authors.initials: KM
authors.lastname: Schak
mesh_terms: D000328:Adult; D030881:Disclosure; D005817:Genetic Counseling; D005820:Genetic Testing; D006801:Humans; D006816:Huntington Disease / Q000150:complications / Q000235:genetics / Q000523:psychology*; D008607:Intellectual Disability / Q000150:complications / Q000523:psychology*; D007872:Legal Guardians; D008297:Male; D010361:Patients / Q000523:psychology*
keywords: Family illness narrative; Guardianship; Huntington’s disease; Intellectual disability; Predictive genetic testing