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Genetic Counselors’ Perceived Responsibilities Regarding Reproductive Issues for Patients at Risk for Huntington Disease
Author(s) -
Hines Karrie A.,
McCarthy Veach Patricia,
LeRoy Bonnie S.
Publication year - 2010
Publication title -
journal of genetic counseling
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.867
H-Index - 52
eISSN - 1573-3599
pISSN - 1059-7700
DOI - 10.1007/s10897-009-9265-5
Subject(s) - genetic counseling , genetic testing , psychosocial , population , disease , psychology , qualitative research , medicine , family medicine , clinical psychology , psychiatry , pathology , genetics , social science , environmental health , sociology , biology
Research indicates that health care professionals’ attitudes may affect patients’ decisions regarding prenatal Huntington Disease testing, but few studies have sampled genetic counselors. In this qualitative study, genetic counselors described their experiences counseling individuals at risk for HD regarding reproductive decision‐making. Five major research questions were investigated: 1) What are genetic counselor responsibilities? 2) What issues arise for patients and counselors? 3) How do counselors reconcile prenatal testing with presymptomatic testing? 4) To what extent are counselors’ initial expectations of at‐risk patients’ beliefs and behaviors met? and 5) What advice would counselors offer to novice practitioners about working with this patient population? Fifteen genetic counselors experienced in counseling individuals at risk for HD participated in a semi‐structured phone interview that yielded several themes. For example, participants identified their primary responsibility as information provision ; less prevalent were psychosocial support and facilitating decision makin g. The most common ethical challenge was testing prenatally for HD which also results in presymptomatic testing of minors. Participants were divided about how directive to be in response to this ethical issue and about termination of a gene positive pregnancy.