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

Zimmermann, Bettina M. and Shaw, David and Heinimann, Karl and Knabben, Laura and Elger, Bernice and Koné, Insa. (2020) How the "control-fate continuum" helps explain the genetic testing decision-making process: a grounded theory study. European journal of human genetics : EJHG : the official journal of the European Society of Human Genetics, 28 (Supplement 5). pp. 1010-1019.

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Official URL: https://edoc.unibas.ch/78314/

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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.
Faculties and Departments:08 Cross-disciplinary Subjects > Ethik > Institut für Bio- und Medizinethik > Bio- und Medizinethik (Elger)
03 Faculty of Medicine > Departement Public Health > Ethik in der Medizin > Bio- und Medizinethik (Elger)
UniBasel Contributors:Zimmermann, Bettina and Shaw, David and Heinimann, Karl and Elger, Bernice Simone and Koné, Insa
Item Type:Article, refereed
Article Subtype:Research Article
Publisher:Nature Publishing Group
Note:Publication type according to Uni Basel Research Database: Journal article
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Last Modified:28 Dec 2020 08:04
Deposited On:28 Dec 2020 08:04

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