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墨西哥遗传学家对信息披露问题的看法。

Mexican geneticists' opinions on disclosure issues.

作者信息

Lisker R, Carnevale A, Villa J A, Armendares S, Wertz D C

机构信息

Departamento de Genética, Instituto Nacional de la Nutrición Salvador Zubirán, Tlalpan, Mexico.

出版信息

Clin Genet. 1998 Oct;54(4):321-9. doi: 10.1034/j.1399-0004.1998.5440410.x.

Abstract

Here we discuss the opinion on disclosure issues (respect for confidentiality) of Mexican professionals working in clinical genetics. The information was obtained from a comprehensive survey on genetics, ethics and society organized by Wertz and Fletcher in 1993, in which geneticists from 37 nations participated. The responses to 18 questions from 64 of 89 (72%) geneticists invited to participate were analyzed for this paper. The questions were directed to investigate: a) disclosure of clinically relevant information in several situations such as testicular feminization syndrome, mosaic de novo balanced translocation in a fetus, or accidental discovery of non-paternity; b) the protection of patient's privacy from the spouse or blood relatives; and c) confidentiality in cases with high genetic risk to relatives. The results reveal significant disparity between general responses related to disclosure of all clinically relevant information and specific responses in particular cases. In addition, professionals appear to give higher priority to protecting the spouse, blood relatives or public safety, rather than the patient's confidentiality.

摘要

在此,我们讨论墨西哥临床遗传学领域专业人员对于信息披露问题(尊重保密性)的看法。这些信息来自于1993年由韦尔茨和弗莱彻组织的一项关于遗传学、伦理与社会的全面调查,来自37个国家的遗传学家参与了该调查。本文分析了受邀参与的89位遗传学家中64位(72%)对18个问题的回答。这些问题旨在调查:a)在多种情况下临床相关信息的披露,如睾丸女性化综合征、胎儿的嵌合型新发平衡易位或意外发现非亲生关系;b)保护患者隐私不被配偶或血亲知晓;c)对有高遗传风险亲属的保密情况。结果显示,在所有临床相关信息披露的总体回答与特定案例中的具体回答之间存在显著差异。此外,专业人员似乎更优先考虑保护配偶、血亲或公共安全,而非患者的保密性。

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