TY - JOUR
T1 - Disclosing Huntington’s Genetic Testing Results in the Context of Intellectual Disability and Guardianship
T2 - Using the Family Illness Narrative to Guide the Flow of Information
AU - Warren, Mark B.
AU - Schak, Kathryn M.
N1 - Publisher Copyright:
© 2016, Springer Science+Business Media New York (Outside the USA).
PY - 2017/4/1
Y1 - 2017/4/1
N2 - 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.
AB - 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.
KW - Family illness narrative
KW - Guardianship
KW - Huntington’s disease
KW - Intellectual disability
KW - Predictive genetic testing
UR - http://www.scopus.com/inward/record.url?scp=84991409698&partnerID=8YFLogxK
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U2 - 10.1007/s10897-016-0007-1
DO - 10.1007/s10897-016-0007-1
M3 - Article
C2 - 27744538
AN - SCOPUS:84991409698
SN - 1059-7700
VL - 26
SP - 272
EP - 275
JO - Journal of Genetic Counseling
JF - Journal of Genetic Counseling
IS - 2
ER -