The progress of medical genetics leads to a significant increase in genetic knowledge and a vast expansion of genetic diagnostics. However, it is still unknown how these changes will be integrated into medical practice and how they will change patients' and healthy persons' perception and evaluation of genetic diagnoses and genetic knowledge. Therefore, we carried out a comprehensive questionnaire survey with more than 500 patients, clients seeking genetic counseling, health care staff, and healthy persons (N = 523). The questionnaire survey covered detailed questions on the value of genetic diagnoses for the different groups of study participants, the right to know or not to know genetic diagnoses, possible differences between genetic and other medical diagnoses, and the practical use and implications of genetic knowledge with a special focus on hereditary neuropsychiatric diseases. A huge majority of the participants (90.7%) stated to have a right to learn every aspect of her or his genetic make-up. Similarly, study participants showed high interest (81.8%) in incidental health care findings-independent of whether the diseases are treatable or not. One can derive from the data outcome that study participants did not follow the implications of a "genetic exceptionalism" and often considered genetic findings as equivalent in relation to other medical diagnoses.

中文翻译：

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展望未来？患者和医护人员对遗传信息和不知情权的理解和评估。

医学遗传学的进步导致遗传学知识的显着增加和遗传学诊断方法的广泛扩展。然而，仍然未知如何将这些改变整合到医学实践中，以及它们如何改变患者和健康人对遗传诊断和遗传知识的看法和评估。因此，我们对500多名患者，寻求遗传咨询的客户，医护人员和健康人进行了全面的问卷调查（N = 523）。问卷调查涵盖了有关以下问题的详细问题：遗传诊断对不同研究参与者群体的价值，了解或不了解遗传诊断的权利，遗传与其他医学诊断之间的可能差异，以及遗传知识的实际应用和意义，特别关注遗传性神经精神疾病。绝大多数参与者（90.7％）表示有权学习其遗传构成的各个方面。同样，研究参与者对偶然的医疗保健发现表现出很高的兴趣（81.8％），而与疾病是否可治愈无关。从数据结果中可以得出一个结论，即研究参与者没有遵循“遗传例外论”的含义，通常认为遗传发现与其他医学诊断具有同等意义。8％）在偶然的医疗保健结果中，与疾病是否可治愈无关。从数据结果中可以得出一个结论，即研究参与者没有遵循“遗传例外论”的含义，通常认为遗传发现与其他医学诊断具有同等意义。8％）在偶然的医疗保健结果中，与疾病是否可治愈无关。从数据结果中可以得出一个结论，即研究参与者没有遵循“遗传例外论”的含义，通常认为遗传发现与其他医学诊断具有同等意义。