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How Risk is Perceived, Constructed and Interpreted by Clients in Clinical Genetics, and the Effects on Decision Making: Systematic Review

  • Original Research
  • Published:
Journal of Genetic Counseling

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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Acknowledgements

The authors would like to thank all members of the GENVIEW steering group, especially Alastair Kent, Melissa Winter, Jonathon Gray, Paul Atkinson and Nicholas Lench. Particular thanks go to Engy Hussein for her administrative support throughout the project. This project was funded by the Department of Health in the UK (Grant HSR03A). There are no conflicts of interest.

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Authors and Affiliations

  1. Department of Primary Care and Public Health, School of Medicine, Cardiff University, 2nd Floor, Neuadd Meirionydd, Heath Park, Cardiff, CF14 4YS, UK

    Stephanie Sivell, Glyn Elwyn & Adrian Edwards

  2. Institute of Medical Genetics, School of Medicine, Cardiff University, Cardiff, UK

    Clara L. Gaff, Angus J. Clarke & Rachel Iredale

  3. Faculty of Health, Sport and Science, University of Glamorgan, Pontypridd, UK

    Chris Shaw

  4. Gwent Healthcare NHS Trust, Torfaen, UK

    Joanna Dundon

  5. Department of Health Sciences, University of Leicester, Leicester, UK

    Hazel Thornton

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  1. Stephanie Sivell
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Correspondence to Stephanie Sivell.

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Sivell, S., Elwyn, G., Gaff, C.L. et al. How Risk is Perceived, Constructed and Interpreted by Clients in Clinical Genetics, and the Effects on Decision Making: Systematic Review. J Genet Counsel 17, 30–63 (2008). https://doi.org/10.1007/s10897-007-9132-1

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