Constructing the meaning of being at-risk: the experiences of individuals living in families at risk for arrhythmogenic right ventricular cardiomyopathy in the province of Newfoundland and Labrador

Manuel, April D. (2013) Constructing the meaning of being at-risk: the experiences of individuals living in families at risk for arrhythmogenic right ventricular cardiomyopathy in the province of Newfoundland and Labrador. Doctoral (PhD) thesis, Memorial University of Newfoundland.

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Abstract

The past decade has seen a proliferation of available predictive genetic tests. These are the result of one of the most significant scientific advances of the 21st century: the Human Genome Project. Social scientists have examined how the availability of genetic testing shapes the lived experience of at-risk people as well as subsequent health decision-making. Little attention has been paid to how the embodiment of risk is (re)shaped in light of changing genetic technologies or how experience of risk may in turn shape the development of genetics. A grounded theory approach was used to gain a fuller understanding of how 29 individuals living in a family at risk for Arrhythmogenic Right Ventricular Cardiomyopathy, in the province of Newfoundland and Labrador, construct the meaning of being at-risk prior to, during, and following genetic testing in relation to the various stages of gene discovery and test availability. Three phases of constructing meaning were identified: (1) Awakening to a New Meaning of Being At-Risk, (2) Deciphering the Meaning of Being At-Risk, and (3) Embodying a New Meaning of Being At-Risk. This study found that at-risk individuals' understandings of the meaning of being at-risk both shapes and is shaped by the "lived experience" of the genetic testing process and also impacts (and is impacted by) health care decisions. The meaning assigned to being at-risk is pragmatic, transient, and fluid. It is pragmatic in that the participants juxtapose three types of contextual dimensions (scientific knowledge, experiential knowledge, and phase of the genetic testing process) against the existing conditions, or specific factors that influence risk perception, as they assign meaning to being at-risk and make decisions, a process that is ongoing throughout the genetic testing process. The meaning assigned to risk is transient, in that as one's risk perception fluctuates so do the contextual dimensions and conditions that influence participants' choices. It is fluid, in that the meaning of being at-risk is shaped and reshaped (and the decisions change), with each new experience and coincident with the particular stage of gene discovery. These findings lead to recommendations for genetic service providers, health policy makers, and genetic scientists on best practices for health care in the context of novel gene discovery.

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