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.
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Acknowledgements
We acknowledge the contribution of Dr med. Manuela Ragablio and Dr med. Nicole Bürki in patient recruitment and study design.
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This study was financed by the Institute for Biomedical Ethics, University of Basel.
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LK is employed at the University Hospital Bern, and KH is employed at the University Hospital Basel. Both recruited study participants and provided genetic counselling for some of them. They did not have access to the original interviews or transcripts to avoid any conflict of interest in result interpretation. Instead, they were involved in study design and the interpretation of the results. The other authors declare no conflict of interest.
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Zimmermann, B.M., Shaw, D., Heinimann, K. et al. How the “control-fate continuum” helps explain the genetic testing decision-making process: a grounded theory study. Eur J Hum Genet 28, 1010–1019 (2020). https://doi.org/10.1038/s41431-020-0602-3
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DOI: https://doi.org/10.1038/s41431-020-0602-3
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