Institute for Biomedical Ethics, University of Basel, Bernoullistrasse 28, 4056, Basel, Switzerland.
Care and Public Health Research Institute, Maastricht University, Maastricht, The Netherlands.
Eur J Hum Genet. 2020 Aug;28(8):1010-1019. doi: 10.1038/s41431-020-0602-3. Epub 2020 Mar 16.
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.
癌症风险遗传检测决策本身就很复杂。了解决策过程的机制和影响因素对于遗传咨询至关重要，但在瑞士尚未对此进行研究。因此，本研究旨在提出一个关于个体进行癌症风险遗传检测决策的理论，以便为医学遗传学家和遗传咨询师提供有关咨询对象的需求和期望的深入了解。我们在瑞士的临床环境中对有风险的个体进行了采访，采用了扎根理论方法。基于访谈数据，我们提出，控制-命运连续体是个体生活哲学的一部分，它对决策过程有重要影响。那些需要控制的人与那些将未来交给命运的人做出了不同的决定。一些心理社会因素影响着控制-命运连续体的位置：“寻找确定性”；“预测后果”；“受到社会影响”；“简化风险”；以及“凭直觉还是深思熟虑地做出决定”。控制-命运连续体理论深入了解了癌症风险遗传检测决策背后的可能原因。它包括接受和拒绝遗传检测的人。我们的理论有助于提供遗传咨询的医疗保健专业人员预测高危家庭中可能出现的问题，并根据人们的需求调整他们的服务。
