目的:关于未经请求的发现(UFs)的非规范性不确定性(关于经验事实的不确定性)和规范性不确定性(关于道德价值观或信念的不确定性)可能在临床遗传学中起重要作用。识别规范性不确定性具有特殊意义,因为它可能会指导咨询实践的新方向。本研究旨在深入了解关于UF的非规范性和规范性不确定性的作用,正如顾问和顾问所表达的那样。
方法:我们对遇到UF的咨询师(n=20)和咨询师(n=20)进行了二次定性分析。按照演绎的方法,我们用了Han等人.现有的不确定性理论框架,其中我们还加入了规范性不确定性。
结果:非规范性不确定性的主要问题对于顾问来说是实际的和个人的,而辅导员的不确定性主要与科学问题有关。规范性不确定性是整个采访的主要主题。我们遇到了自治与道德冲突仁慈和非恶意和自主性与真实。
结论:关于UF的非规范性不确定性突出了需要对其外显率和临床效用获得更多的洞察力。这项研究表明,道德冲突是临床遗传学中不确定性情绪的主要来源。
结论:探索顾问的非规范性不确定性和规范性冲突似乎是优化遗传咨询的先决条件。
OBJECTIVE: Non-normative uncertainty (uncertainty about empirical facts) and normative uncertainty (uncertainty about moral values or beliefs) regarding unsolicited findings (UFs) might play an important role in clinical genetics. Identifying normative uncertainty is of special interest since it might guide towards novel directions for counseling practice. This study aims to gain insight into the role of non-normative and normative uncertainty regarding UFs, as expressed by counselees and counselors.
METHODS: We performed a secondary qualitative analysis of interviews with counselees (n = 20) and counselors (n = 20) who had been confronted with UFs. Following a deductive approach, we used Han et al.\'s existing theoretical framework of uncertainty, in which we additionally incorporated normative uncertainty.
RESULTS: Major issues of non-normative uncertainty were practical and personal for counselees, whilst counselors\' uncertainty pertained mainly to scientific issues. Normative uncertainty was a major theme throughout the interviews. We encountered the moral conflicts of autonomy vs. beneficence and non-maleficence and of autonomy vs. truthfulness.
CONCLUSIONS: Non-normative uncertainty regarding UFs highlights the need to gain more insight in their penetrance and clinical utility. This study suggests moral conflicts are a major source of feelings of uncertainty in clinical genetics.
CONCLUSIONS: Exploring counselees\' non-normative uncertainties and normative conflicts seems a prerequisite to optimize genetic counseling.