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Facing legal barriers regarding disclosure of genetic information to relatives
New Genetics and Society ( IF 1.8 ) Pub Date : 2020-04-21 , DOI: 10.1080/14636778.2020.1755639
Roy Gilbar 1, 2 , Sivia Barnoy 3
Affiliation  

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.

中文翻译:

在向亲属披露遗传信息方面面临法律障碍

领先的研究项目证明了公众对基因诊断和治疗的兴趣日益增长。在此背景下,向亲属披露遗传信息成为一个突出问题。然而,这涉及患者保密,这是有法律依据的,与向亲属披露相冲突。在此背景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一项定性研究。研究结果表明,临床医生的方法比法律的方法更具相关性,因为他们采取了积极的措施,以确保在患者不愿自己传达这些信息时将家庭信息传递给亲属。
更新日期:2020-04-21
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