Abstract
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. 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. 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. 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. 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.
Highlights
Individuals suspected to carry genetic variants that lead to hereditary forms of cancer face the decision of whether to take a genetic test [1]
The interpretation of predictive genetic test results is challenging, as cancer risk assessments depend on numerous factors such as the exact genetic variant, family history of cancer, and clinical evidence available for the particular variant [3]
Even a genetic test that does not detect any particular pathogenic genetic variant does not imply that the tested individual is free of genetic risk factors for developing cancer [4, 5]
Summary
Individuals suspected to carry genetic variants that lead to hereditary forms of cancer face the decision of whether to take a genetic test [1]. Performed in unaffected individuals, such tests provide a predictive assessment of the risk of developing cancer in the future and can guide preventive measures, such as regular screening, preventive medication, or surgeries. Such predictive genetic tests hold important psychosocial implications, can lead to anxiety, and might indirectly provide risk information for relatives [2]. Even a genetic test that does not detect any particular pathogenic genetic variant does not imply that the tested individual is free of genetic risk factors for developing cancer [4, 5]. The decision-making process in genetic testing for cancer predisposition and other forms of predictive genetic testing is, considerably 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
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