How Risk is Perceived, Constructed and Interpreted by Clients in Clinical Genetics, and the Effects on Decision Making: Systematic Review |
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Authors: | Stephanie Sivell Glyn Elwyn Clara L Gaff Angus J Clarke Rachel Iredale Chris Shaw Joanna Dundon Hazel Thornton Adrian Edwards |
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Institution: | (1) Department of Primary Care and Public Health, School of Medicine, Cardiff University, 2nd Floor, Neuadd Meirionydd, Heath Park, Cardiff, CF14 4YS, UK;(2) Institute of Medical Genetics, School of Medicine, Cardiff University, Cardiff, UK;(3) Faculty of Health, Sport and Science, University of Glamorgan, Pontypridd, UK;(4) Gwent Healthcare NHS Trust, Torfaen, UK;(5) Department of Health Sciences, University of Leicester, Leicester, UK |
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Abstract: | As an individual’s understanding of their genetic risk may influence risk management decisions, it is important to understand
the ways in which risk is constructed and interpreted. We systematically reviewed the literature, undertaking a narrative synthesis
of 59 studies presenting data on the ways in which individuals perceive, construct and interpret their risk, and the subsequent
effects. While most studies assessed perceived risk quantitatively, the combined evidence suggests individuals find risk difficult
to accurately quantify, with a tendency to overestimate. Rather than being a stand-alone concept, risk is something lived
and experienced and the process of constructing risk is complex and influenced by many factors. While evidence of the effects
of perceived risk is limited and inconsistent, there is some evidence to suggest high risk estimations may adversely affect
health and lead to inappropriate uptake of medical surveillance and preventative measures by some individuals. A more focused
approach to research is needed with greater exploration of the ways in which risk is constructed, along with the development
of stronger theoretical models, to facilitate effective and patient-centered counseling strategies. |
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Keywords: | Genetic counseling Risk communication Risk perception Decision making Risk management Systematic review |
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