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生物银行与公共卫生:人权方法是联系两者的纽带吗?

Biobanking and public health: is a human rights approach the tie that binds?

机构信息

Indiana University Center for Bioethics, 410 W 10th Street, Suite 3100, Indianapolis, IN 46202, USA.

出版信息

Hum Genet. 2011 Sep;130(3):451-63. doi: 10.1007/s00439-011-1061-2. Epub 2011 Jul 15.

DOI:10.1007/s00439-011-1061-2
PMID:21761137
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7088251/
Abstract

Ethical principles guiding public health and genomic medicine are often at odds: whereas public health practice adopts collectivist principles that emphasize population-based benefits, recent advances in genomic and personalized medicine are grounded in an individualist ethic that privileges informed consent, and the balancing of individual risk and benefit. Indeed, the attraction of personalized medicine is the promise it holds out to help individuals get the "right medicine for the right problem at the right time." Research biobanks are an effective tool in the genomic medicine toolbox. Biobanking in public health presents a unique case study to unpack some of these issues in more detail. For example, there is a long history of using banked tissue obtained under clinical diagnostic conditions for later public health uses. But despite the collectivist approach of public health, the principles applied to the ethical challenges of biobanking (e.g. informed consent, autonomy, privacy) remain individualist. We demonstrate the value of using human rights as a public health ethics framework to address this tension in biobanking by applying it to two illustrative cases.

摘要

指导公共卫生和基因组医学的伦理原则往往存在冲突

公共卫生实践采用集体主义原则,强调基于人群的利益,而最近基因组学和个性化医学的进展则基于个人主义伦理,强调知情同意和个人风险与利益的平衡。事实上,个性化医学的吸引力在于它承诺帮助个人在“正确的时间为正确的问题获得正确的药物”。研究生物库是基因组医学工具包中的有效工具。公共卫生中的生物库为更详细地阐明这些问题提供了一个独特的案例研究。例如,长期以来,人们一直使用在临床诊断条件下获得的储存组织,以便以后用于公共卫生用途。但是,尽管公共卫生采取了集体主义方法,但应用于生物库伦理挑战的原则(例如知情同意、自主权、隐私)仍然是个人主义的。我们通过将人权应用于两个说明性案例,展示了将人权作为公共卫生伦理框架来解决生物库中这种紧张关系的价值。

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A human rights approach to an international code of conduct for genomic and clinical data sharing.一种基于人权视角的基因组和临床数据共享国际行为准则。
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本文引用的文献

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Nat Med. 2011 Apr;17(4):401. doi: 10.1038/nm0411-401.
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Genomics. Deflating the genomic bubble.基因组学。戳破基因组泡沫。
Science. 2011 Feb 18;331(6019):861-2. doi: 10.1126/science.1198039.
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Nationwide molecular surveillance of pandemic H1N1 influenza A virus genomes: Canada, 2009.全国范围的大流行性 H1N1 流感 A 病毒基因组分子监测:加拿大,2009 年。
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Extending the reach of public health genomics: what should be the agenda for public health in an era of genome-based and “personalized” medicine?拓展公共卫生基因组学的应用范围:在基于基因组和“个体化”医学的时代,公共卫生应关注哪些议题?
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Being more realistic about the public health impact of genomic medicine.更加现实地看待基因组医学对公共卫生的影响。
PLoS Med. 2010 Oct 12;7(10):e1000347. doi: 10.1371/journal.pmed.1000347.
6
International obligations through collective rights: Moving from foreign health assistance to global health governance.通过集体权利承担国际义务:从对外卫生援助走向全球卫生治理。
Health Hum Rights. 2010 Jun 15;12(1):61-72.
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Research ethics in the era of personalized medicine: updating science's contract with society.个性化医疗时代的研究伦理:更新科学与社会的契约。
Public Health Genomics. 2010;13(6):378-84. doi: 10.1159/000319473. Epub 2010 Aug 31.
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Framing genomics, public health research and policy: points to consider.构建基因组学、公共卫生研究与政策:需考虑的要点。
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