Journal of Genetic Counseling

, Volume 17, Issue 1, pp 30–63 | Cite as

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

  • Stephanie SivellEmail author
  • Glyn Elwyn
  • Clara L. Gaff
  • Angus J. Clarke
  • Rachel Iredale
  • Chris Shaw
  • Joanna Dundon
  • Hazel Thornton
  • Adrian Edwards
Original Research


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.


Genetic counseling Risk communication Risk perception Decision making Risk management Systematic review 



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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Copyright information

© National Society of Genetic Counselors, Inc. 2007

Authors and Affiliations

  • Stephanie Sivell
    • 1
    Email author
  • Glyn Elwyn
    • 1
  • Clara L. Gaff
    • 2
  • Angus J. Clarke
    • 2
  • Rachel Iredale
    • 2
  • Chris Shaw
    • 3
  • Joanna Dundon
    • 4
  • Hazel Thornton
    • 5
  • Adrian Edwards
    • 1
  1. 1.Department of Primary Care and Public HealthSchool of Medicine, Cardiff UniversityCardiffUK
  2. 2.Institute of Medical GeneticsSchool of Medicine, Cardiff UniversityCardiffUK
  3. 3.Faculty of Health, Sport and ScienceUniversity of GlamorganPontypriddUK
  4. 4.Gwent Healthcare NHS TrustTorfaenUK
  5. 5.Department of Health SciencesUniversity of LeicesterLeicesterUK

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