How the "control-fate continuum" helps explain the genetic testing decision-making process: a grounded theory study
JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift)
ID 4596629
Author(s) Zimmermann, Bettina M.; Shaw, David; Heinimann, Karl; Knabben, Laura; Elger, Bernice; Koné, Insa
Author(s) at UniBasel Zimmermann, Bettina
Shaw, David
Heinimann, Karl
Elger, Bernice Simone
Koné, Insa
Year 2020
Title How the "control-fate continuum" helps explain the genetic testing decision-making process: a grounded theory study
Journal European journal of human genetics : EJHG : the official journal of the European Society of Human Genetics
Volume 28
Number 8
Pages / Article-Number 1010-1019
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.
Publisher Nature Publishing Group
ISSN/ISBN 1018-4813 ; 1476-5438
Full Text on edoc No
Digital Object Identifier DOI 10.1038/s41431-020-0602-3
PubMed ID
ISI-Number WOS:000519839700001
Document type (ISI) Article

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