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

Zimmermann, Bettina; Shaw, David; Heinimann, Karl; Knabben, Laura; Elger, Bernice Simone; Koné, Inza

doi:10.1038/s41431-020-0602-3

Cited by 5 publications

(8 citation statements)

References 36 publications

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“…This might produce stress, a feeling of losing control, and desperation. On the other hand, such considerations of inherent life uncertainty reflect counselees’ general life philosophy, as our group found in a different analysis based on the same data [ 25 ]. Consequently, our findings underline how vital it is for informed decision making that genetic counselors attempt to understand the values and life philosophy of their individual counselees and address them, as those preferring to leave life to fate might be more prone to enter harmful cycles of brooding.…”

Section: Discussionmentioning

confidence: 92%

“…While those individuals gained little certainty from a genetic test, others felt empowered by knowing and quantitatively assessing their hereditary cancer risk through a genetic test [ 25 ].…”

Section: Resultsmentioning

confidence: 99%

“…This work is a secondary analysis from a grounded theory study about the genetic testing decision-making process in the Swiss context, where we found that reducing complexity was an integral part of this process [ 25 ]. We applied the COREQ guidelines for reporting qualitative studies [ 35 ] ( S1 File ).…”

Section: Methodsmentioning

confidence: 99%

“…We conducted these interviews after an initial analysis of all counselee interviews and included them in the analysis to examine whether experts supported or contradicted our general understanding of interview data. While all participants commented on the original grounded theory study [ 25 ], no additional feedback was sought for this secondary analysis.…”

Section: Methodsmentioning

confidence: 99%

“…We interviewed at-risk adults who attended genetic counseling and decided upon genetic testing for heritable cancer syndromes (hereafter: counselees). We asked them how they experienced the decision-making process and found that their decision was heavily influenced by their life philosophy: while some like to leave life to fate, others prefer control, and genetic testing is perceived as taking control [ 25 ]. We also found many instances where counselees talked about how they dealt with the complexities inherent in such a decision-making process.…”

Section: Introductionmentioning

confidence: 99%

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The use of heuristics in genetic testing decision-making: A qualitative interview study

et al. 2021

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Background Decision-making concerning predictive genetic testing for hereditary cancer syndromes is inherently complex. This study aims to investigate what kind of complexities adults undergoing genetic counseling in Switzerland experience, how they deal with them, and what heuristics they use during the decision-making process. Methods Semi-structured qualitative interviews with eighteen Swiss adults seeking genetic counseling for hereditary cancer syndrome genetic testing and two counseling physicians were conducted and analyzed using a grounded theory approach. Results Counselees stated that once they were aware of their eligibility for genetic testing they perceived an inevitable necessity to make a decision in a context of uncertainties. Some counselees perceived this decision as simple, others as very complex. High emotional involvement increased perceived complexity. We observed six heuristics that counselees used to facilitate their decision: Anticipating the test result; Focusing on consequences; Dealing with information; Interpreting disease risk; Using external guidance; and (Re-)Considering the general uncertainty of life. Limitations Our findings are limited to the context of predictive genetic testing for hereditary cancer syndromes. This qualitative study does not allow extrapolation of the relative frequency of which heuristics occur. Conclusions The use of heuristics is an inherent part of decision-making, particularly in the complex context of genetic testing for inherited cancer predisposition. However, some heuristics increase the risk of misinterpretation or exaggerated external influences. This may negatively impact informed decision-making. Thus, this study illustrates the importance of genetic counselors and medical professionals being aware of these heuristics and the individual manner in which they might be applied in the context of genetic testing decision-making. Findings may offer practical support to achieve this, as they inductively focus on the counselees’ perspective.

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Section: Discussionmentioning

confidence: 92%

Section: Resultsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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The use of heuristics in genetic testing decision-making: A qualitative interview study

et al. 2021

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Cancer‐linked genetic testing: The key role of cultural influences

Nelson¹,

Faquin²

2023

Cancer Cytopathology

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This news section is written by a medical journalist and offers Cancer Cytopathology readers timely information on events, issues, and personalities of interest to the subspecialty. In this second of a two‐part series, genetic testing for hereditary cancers promises more targeted approaches to prevention and intervention, but cultural differences in perceptions of utility, autonomy, and decision‐making have a major impact on how such testing is conducted.

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Genetic testing decision-making experiences within families of colorectal cancer patients: A qualitative study

He,

Guan,

et al. 2023

European Journal of Oncology Nursing

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

Cited by 5 publications

References 36 publications

The use of heuristics in genetic testing decision-making: A qualitative interview study

The use of heuristics in genetic testing decision-making: A qualitative interview study

Cancer‐linked genetic testing: The key role of cultural influences

Genetic testing decision-making experiences within families of colorectal cancer patients: A qualitative study

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