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Stories in Decisions: How At-Risk Individuals Decide to Request Predictive Testing for Huntington Disease

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Abstract

Huntington Disease (HD) is a hereditary neurological disease that typically occurs in mid-life. There is no prevention or cure, but persons at risk may request predictive genetic testing to learn whether or not they will develop the disease later in life. Many studies describe why such persons request this knowledge. Few consider how people actually make this novel decision. Drawing on in-depth interviews with sixteen test candidates, this article differentiates three types of stories about—as well as embedded in—the experience of deciding. Each type of story sheds a different light on the meaning and experience of making this decision. Stories of having to know reveal that decision-making may be experienced as a self-evident act while stories of evolving toward it feature an incremental process of weighing up the implications. Stories of taking the decision feature a pivotal point which involves the narrator in seeing anew the opportunity to make a choice. Emphasizing previously neglected temporal, biographical and phenomenological dimensions of decision-making, this typology underscores the relevance of narrative in complex processes of decision-making. It also illustrates the inadequacy of understanding decision-making purely through the lens of rational choice.

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  1. The W. Maurice Young Centre for Applied Ethics, University of British Columbia, 227–6356 Agricultural Road, Vancouver, British Columbia, Canada, V6T 1Z2

    Susan M. Cox

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Cox, S.M. Stories in Decisions: How At-Risk Individuals Decide to Request Predictive Testing for Huntington Disease. Qualitative Sociology 26, 257–280 (2003). https://doi.org/10.1023/A:1022971113683

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