在向亲属披露遗传信息方面面临法律障碍

IF 1.3 4区 医学 Q4 BIOTECHNOLOGY & APPLIED MICROBIOLOGY
Roy Gilbar, S. Barnoy
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引用次数: 0

摘要

领先的研究项目是公众对基因诊断和治疗日益增长的兴趣的证据。在这种背景下,向亲属披露遗传信息已成为一个突出的问题。然而,这涉及到病人的保密,这是基于法律的,与向亲属透露有冲突。在这种情况下进行法律和生物伦理讨论时,首先有必要检查临床医生如何看待法律在其实践中的作用以及他们如何解释法律。因此,在以色列的临床医生中进行了定性研究。研究结果表明,临床医生的方法比法律更具有相关性,因为他们采取了积极的步骤,以确保在患者不愿自己传达这些信息时,将家庭信息传达给亲属。鉴于这些发现,作者认为,法律可以解决明确或暗示拒绝通知亲属的情况。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Facing legal barriers regarding disclosure of genetic information to relatives
Leading research projects are evidence of the growing public interest in genetic diagnosis and treatment. In this context, disclosure of genetic information to relatives has become a prominent issue. However, this involves patient confidentiality, which is grounded in law and conflicts with disclosure to relatives. When conducting a legal and bioethical discussion in this context, it is first necessary to examine how clinicians perceive the role of law in their practice and how they interpret it. A qualitative study was therefore conducted among clinicians in Israel. The findings indicate that the clinicians’ approach is more relational than that of the law, in view of their pro-active steps to ensure that familial information reaches the relatives when the patient is reluctant to convey this information themselves. In light of these findings the authors argue that the law can resolve situations of explicit and implicit refusal to inform relatives.
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来源期刊
New Genetics and Society
New Genetics and Society 生物-生物工程与应用微生物
CiteScore
4.30
自引率
16.70%
发文量
19
审稿时长
>12 weeks
期刊介绍: New Genetics and Society: Critical Studies of Contemporary Biosciences is a world-leading journal which: -Provides a focus for interdisciplinary and multi-disciplinary, leading-edge social science research on the new genetics and related biosciences; -Publishes theoretical and empirical contributions reflecting its multi-faceted development; -Provides an international platform for critical reflection and debate; -Is an invaluable research resource for the many related professions, including health, medicine and the law, wishing to keep abreast of fast changing developments in contemporary biosciences. New Genetics and Society publishes papers on the social aspects of the new genetics (widely defined), including gene editing, genomics, proteomics, epigenetics and systems biology; and the rapidly developing biosciences such as biomedical and reproductive therapies and technologies, xenotransplantation, stem cell research and neuroscience. Our focus is on developing a better understanding of the social, legal, ethical and policy aspects, including their local and global management and organisation.
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