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告知亲属遗传风险:对比利时法律背景的考察。

Informing relatives of their genetic risk: an examination of the Belgian legal context.

机构信息

Center for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium.

Life Sciences & Society Lab, Centre for Sociological Research, KU Leuven, Leuven, Belgium.

出版信息

Eur J Hum Genet. 2022 Jul;30(7):766-771. doi: 10.1038/s41431-021-01016-3. Epub 2022 Jan 8.

Abstract

Findings from genomic sequencing can have important implications for patients and relatives. For this reason, most professional guidelines support that patients have an ethical duty to inform relatives and, when disclosure does not occur, most guidelines allow health-care professionals (HCPs) to breach confidentiality. Translating the ethical duties to respect the patient's confidentiality and prevent harm in at-risk relatives into legislation is a complex issue due to the both personal and familial nature of genetic information. In many countries there is no specific guideline or law addressing family communication of genetic information and thus it is unclear what duties patients and HCPs have towards at-risk relatives. Using Belgium as an example for countries in which this is the case, we examined the existing Belgian legislation in relation to three central topics: (1) patients' duties to family members, (2) respect for patient confidentiality and privacy, and (3) HCPs' duties to family members. We then investigated international legal frameworks and compared it with the Belgian context to see to what degree international precedent could aid in the interpretation of Belgian law. Based on our review of the legislation, we make recommendations for the interpretation of current law and examine whether there is sufficient legal precedent to answer the questions central to family communication of genetic information. Although we focus on the specific Belgian legislation, the discussions are relevant for many other countries that have similar legislative approaches.

摘要

基因测序的结果可能对患者和亲属有重要影响。出于这个原因,大多数专业指南都支持患者有告知亲属的道德义务,并且在未披露的情况下,大多数指南都允许医疗保健专业人员(HCPs)违反保密义务。将尊重患者保密性和防止处于风险中的亲属受到伤害的道德义务转化为立法是一个复杂的问题,因为遗传信息既有个人性质又有家庭性质。在许多国家,没有专门的准则或法律来解决遗传信息的家庭交流问题,因此不清楚患者和 HCPs 对处于风险中的亲属有哪些义务。以比利时为例,我们研究了现有的比利时立法与三个核心主题的关系:(1)患者对家庭成员的义务;(2)尊重患者的保密和隐私;(3)HCPs 对家庭成员的义务。然后,我们调查了国际法律框架,并将其与比利时的情况进行了比较,以了解国际先例在多大程度上可以帮助解释比利时法律。基于我们对立法的审查,我们对现行法律的解释提出了建议,并研究了是否有足够的法律先例来回答遗传信息家庭交流的核心问题。尽管我们专注于特定的比利时立法,但这些讨论对于许多其他采用类似立法方法的国家也具有相关性。

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Clinical genomics testing: mainstreaming and globalising.临床基因组学检测:主流化与全球化
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