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Attitudes toward the right to autonomous decision-making in psychiatric genetic testing: Controversial and context-dependent.
American Journal of Medical Genetics Part B: Neuropsychiatric Genetics ( IF 2.8 ) Pub Date : 2019-03-26 , DOI: 10.1002/ajmg.b.32724
Jana Strohmaier 1 , Stephanie H Witt 1 , Josef Frank 1 , Noemi Lemme 1 , Laura Flatau 2 , Fabian Streit 1 , Jerome C Foo 1 , Markus Reitt 3 , Dan Rujescu 4, 5 , Thomas G Schulze 2, 3 , Dirk Lanzerath 6 , Franciska Illes 7 , Franziska Degenhardt 8, 9 , Marcella Rietschel 1
Affiliation  

Recent breakthroughs in psychiatric genetics have identified genetic risk factors of yet unknown clinical value. A main ethical principal in the context of psychiatric research as well as future clinical genetic testing is the respect for a person's autonomy to decide whether to undergo genetic testing, and whom to grant access to genetic data. However, experience within the psychiatric genetic research setting has indicated controversies surrounding attitudes toward this ethical principal. This study aimed to explore attitudes concerning the right of individuals to self-determine testing and disclosure of results, and to determine whether these attitudes are context-dependent, that is, not directly related to the test result but rather to specific circumstances. N = 160 individuals with major depression or bipolar disorder and n = 29 relatives of individuals with either illness completed an online-questionnaire assessing attitudes toward genetic testing, genetic research, disclosure of results, incidental findings, and access to psychiatric genetic test results. Generally, the right of the person's autonomy was considered very important, but attitudes varied. For example, half of those who considered that children should have the right to refuse psychiatric genetic testing even against their parents' will, also state that they should be tested upon their parents' wishes. Also, the majority of respondents considered the physician entitled to disregard their stated wishes concerning the disclosure of incidental findings in case of good treatment options. Thus, researchers and clinicians must be aware that attitudes toward psychiatric genetic testing are often mutable and should discuss these prior to testing.

中文翻译:

对精神病学基因测试中自主决策权的态度:有争议且取决于上下文。

精神病学遗传学的最新突破已经确定了临床价值未知的遗传危险因素。在精神病学研究以及未来的临床基因检测中,一个主要的伦理原则是尊重一个人的自主权,以决定是否进行基因检测以及由谁来授予对遗传数据的访问权。但是,精神病学遗传研究背景下的经验表明,围绕对此道德主体的态度存在争议。这项研究旨在探讨有关个人自决测试和结果披露权利的态度,并确定这些态度是否与上下文有关,即与测试结果没有直接关系,而是与特定情况有关。N = 160名患有严重抑郁症或躁郁症的人,n = 29名患有任何疾病的人的亲戚,完成了一项在线问卷调查,评估了对基因检测,基因研究,结果的披露,偶然发现以及获得精神病学基因检测结果的态度。通常,人的自治权被认为是非常重要的,但是态度却有所不同。例如,一半认为儿童应有权拒绝进行精神病基因检测甚至违反父母意愿的人中,有一半人还指出,应根据父母的意愿对他们进行检测。同样,大多数答复者认为,如果有良好的治疗选择,则医生有权无视他们关于披露偶然发现的陈述意愿。从而,
更新日期:2019-11-01
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