How the "control-fate continuum" helps explain the genetic testing decision-making process: a grounded theory study

Bettina M. Zimmermann*, David Shaw, Karl Heinimann, Laura Knabben, Bernice Elger, Insa Kone

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

4 Citations (Web of Science)

Abstract

Genetic testing decision-making for cancer predisposition is inherently complex. Understanding the mechanisms and influencing factors of the decision-making process is essential for genetic counselling and has not yet been investigated in Switzerland. This study's aim is thus to provide a theory about the individual's decision-making process regarding genetic testing for cancer predispositions in order to provide medical geneticists and genetic counsellors with insights into the needs and expectations of counsellees. We interviewed at-risk individuals who underwent genetic counselling in a clinical setting in Switzerland, using a grounded theory approach. Based on the interview data, we propose that a control-fate continuum, which is part of the individuals' life philosophy, importantly influences the decision-making process. Those in need for control decide differently compared with those leaving their future to fate. Several psychosocial factors influence the position on the control-fate continuum: "looking for certainty"; "anticipating consequences"; "being socially influenced"; "simplifying risks"; and "deciding intuitively vs reflectively". The control-fate continuum theory gives insights into the possible reasons behind decision-making regarding genetic testing for cancer predispositions. It includes both acceptors and decliners of genetic testing. Our theory helps healthcare professionals offering genetic counselling to anticipate problems within at-risk families and adapting their services to people's needs.

Original languageEnglish
Pages (from-to)1010-1019
Number of pages10
JournalEuropean Journal of Human Genetics
Volume28
Issue number8
DOIs
Publication statusPublished - 16 Mar 2020

Keywords

  • HEREDITARY BREAST-CANCER
  • COLORECTAL-CANCER
  • RISK
  • COMMUNICATION
  • FAMILIES
  • EUROPE
  • LEGISLATION
  • BARRIERS
  • ETHICS

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