Patient decision-making for clinical genetics


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Abstract

Medicine is incorporating genetic services into all avenues of health-care, ranging from the rarest to the most common diseases. Cognitive theories of decision-making still dominate professionals' understanding of patient decision-making about how to use genetic information and whether to have testing. I discovered a conceptual model of decision-making while carrying out a phenomenological-hermeneutic descriptive study of a convenience sample of 12 couples who were interviewed while deciding whether to undergo prenatal genetic testing.Thirty-two interviews were conducted with 12 men and 12 women separately. Interviews were transcribed verbatim and all data were analyzed using three levels of coding that were sorted into 30 categories and then abstracted into three emergent meta-themes that described men's and women's attempts to make sense and find meaning in how to best use prenatal genetic technology. Their descriptions of how they thought about, communicated, and coped with their decision were so detailed it was possible to discern nine different types of thinking they engaged in while deciding to accept or decline testing.They believed that decision-making is a process of working through your own personal style of thinking. This might include only one or any combination of the following types of thinking: analytical, ethical, moral, reflective, practical, hypothetical, judgmental, scary, and second sight, as described in detail by these 12 couples.

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