新西兰奥特亚罗瓦的亲属基因信息知情权。

IF 0.6 Q2 LAW Journal of Law and Medicine Pub Date : 2023-07-01
Christian Poland
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引用次数: 0

摘要

一旦某人被诊断出患有遗传异常或遗传疾病,这些信息对其亲生父母来说可能是极其宝贵的。这可以让他们获得预防性治疗或做出明智的决定,比如是否要一个亲生孩子。然而,当原始家庭成员拒绝向有风险的亲属披露这些信息时,他们的病人保密权与亲属的知情权之间就会产生冲突。奥特亚罗瓦-新西兰缺乏向高危亲属披露遗传信息的具体可行机制。本文探讨了未经同意披露基因信息所涉及的理论和实践问题,为奥特亚罗亚提出了一条新的道路。文章认为,目前西方国家将自主权视为一种个人权利,无需对他人承担义务,这种态度已不再是对遗传信息保密的适当理由。相反,被诊断为基因异常或紊乱的患者只有在对隐私有合理期望的情况下才有权要求保密--这要通过权衡支持和反对披露信息的客观利益来确定。这种方法承认,我们在对最终共享的家庭信息行使自主权时,应考虑到我们与他人的密切 关系。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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Relatives' Right to Know Genetic Information in Aotearoa New Zealand.

Once someone is diagnosed with a genetic abnormality or disorder, that information can be extremely valuable to their biological relatives. It may allow them to access preventive treatment or make informed decisions, such as whether to have a biological child or not. However, when the original family member refuses to disclose that information to at-risk relatives, a conflict arises between their right to patient confidentiality and their relatives' right to know. Aotearoa New Zealand lacks a specific, workable mechanism for disclosing genetic information to at-risk relatives. This article traverses the theoretical and practical issues involved in non-consensual disclosure of genetic information to suggest a new path for Aotearoa. It argues that the current, Western attitude of autonomy as an individual right free from obligations to others is no longer an appropriate justification for confidentiality over genetic information. Instead, patients diagnosed with a genetic abnormality or disorder should only be entitled to confidentiality where they have a reasonable expectation of privacy - determined by weighing the objective interests for and against disclosure. This approach recognises that we ought to consider our close relationships with others when we exercise autonomy over what is ultimately shared family information.

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CiteScore
0.70
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63
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