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Predictive Genetic Testing and Beyond: A Theory of Engagement

This article presents a tentative grounded theory, which can provide some explanation of variation in behaviour around predictive genetic testing (PGT) for Hereditary Non-Polyposis Colorectal Cancer (HNPCC), based on interviews with individuals (n = 55) from families with a clinical diagnosis of HNPCC, 12 of whom were followed through the PGT protocol. The theory is built around a core category of engagement, a newly constructed concept reflecting the degree of cognitive and emotional involvement with cancer risk in individuals from these families, and models the psychosocial process of engaging with cancer risk. The degree of engagement at the time of testing can explain variations in approaches and reactions to PGT. A series of social factors, many related to the experiences of family life, emerged as either facilitating or blocking the process of engaging with cancer risk; a series of psychological factors emerged as interacting in a recursive, dynamic manner with each other and with engagement status. The degree of engagement can change with the unfolding of time and events in family life. The theory of engagement (TE) provides an explanatory framework for understanding behaviour related to PGT for HNPCC, and can potentially be applied to research on risk perception in the social sciences more generally. In addition, the theory may have potential uses in the genetics clinic, in identifying individuals at risk of adverse reactions to PGT for cancer, thus enabling better targeting of genetic counselling resources.