This study is concerned with how candidates for pre-symptomatic genetic testing for Huntington's disease represent their risk status and how they describe the process involved in their deciding whether or not to take the test. Transcripts of semi-structured interviews with five women offered testing were analysed by interpretative phenomenological analysis (IPA). The women find it difficult to conceptualize their current risk, and express reasons for a perceived enhanced or diminished risk based on, for example, number of previous family members affected or pre-selection of a likely recipient of the genetic mutation. The article then illustrates the contextual factors, such as family discussion or a key triggering event, which can influence the decision process of whether or not to take the genetic test. The study has implications both for psychological models of decision making and for the practice of genetic counselling.
None of the authors has a conflict of interest in relation to this paper
AcknowledgementsWe thank the participants for speaking about their experiences and three anonymous reviewers for their helpful and insightful comments on a previous version of this 2 paper. This study was supported by a small dept research grant from University of Sheffield.
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DOING THE RIGHT THING FOR ONE'S CHILDREN: DECIDING WHETHER TO TAKE THE GENETIC TEST FOR HUNTINGTON'S DISEASE AS A MORAL DILEMMA AbstractThis is a qualitative examination of candidates' decision-making in relation to the genetic test for Huntington's disease (HD). 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 paper offers a detailed examination of how participants think through this dilemma.
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