Smith JA, Stephenson M, Jacobs C, Quarrell O. Doing the right thing for one's children: deciding whether to take the genetic test for Huntington's disease as a moral dilemma. Clin Genet 2013: 83: 417-421. (C) John Wiley & Sons A/S. Published by Blackwell Publishing Ltd, 2013 This is a qualitative examination of candidates' decision-making in relation to the genetic test for Huntington's disease. Semi-structured interviews were conducted with nine participants who were asked about factors influencing their decision whether to take up predictive genetic testing. Transcripts of interviews were subjected to interpretative phenomenological analysis to elicit emergent themes. A key factor for participants was to do the right thing for their children. Interestingly, this factor presents a moral dilemma to participants and can direct them either towards or away from testing. This article offers a detailed examination of how participants think through this dilemma.
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Univ Michigan, Child Hlth Evaluat & Res Unit, Div Gen Pediat, Ann Arbor, MI 48109 USAUniv Michigan, Child Hlth Evaluat & Res Unit, Div Gen Pediat, Ann Arbor, MI 48109 USA
Tarini, Beth A.
Singer, Dianne
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Univ Michigan, Child Hlth Evaluat & Res Unit, Div Gen Pediat, Ann Arbor, MI 48109 USAUniv Michigan, Child Hlth Evaluat & Res Unit, Div Gen Pediat, Ann Arbor, MI 48109 USA
Singer, Dianne
Clark, Sarah J.
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Univ Michigan, Child Hlth Evaluat & Res Unit, Div Gen Pediat, Ann Arbor, MI 48109 USAUniv Michigan, Child Hlth Evaluat & Res Unit, Div Gen Pediat, Ann Arbor, MI 48109 USA
Clark, Sarah J.
Davis, Matthew M.
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Univ Michigan, Div Gen Med, Ann Arbor, MI 48109 USA
Univ Michigan, Gerald R Ford Sch Publ Policy, Ann Arbor, MI 48109 USAUniv Michigan, Child Hlth Evaluat & Res Unit, Div Gen Pediat, Ann Arbor, MI 48109 USA
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Univ British Columbia, Pediat, Vancouver, BC, Canada
BC Childrens Hosp, BC Injury Res & Prevent Unit, Vancouver, BC, CanadaUniv British Columbia, Pediat, Vancouver, BC, Canada
Bauer, Michelle Emma Eileen
Pike, Ian
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Univ British Columbia, Pediat, Vancouver, BC, Canada
BC Childrens Hosp, BC Injury Res & Prevent Unit, Vancouver, BC, CanadaUniv British Columbia, Pediat, Vancouver, BC, Canada