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Reshaping Informed Consent in the Biobanking Context

机译:重塑生物银行背景下的知情同意

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In my article, I discuss the role of informed consent in the context of biobanking. I argue that the basic issue in understanding the role of the consent is one of identifying the interests at stake and determining which of these interests we intend to promote. The definition of the informational content represents only a consequential step. For this purpose, I analyse the legal status of human biological materials from three different perspectives: "material", "informational" and "relational". Informed consent produces different effects on each of these perspectives. From the material perspective, consent can influence the allocation of property rights over human tissue; from the informational point of view, consent is the legal instrument that permits control over personal data; while from the "relational" perspective, it is possible through consent to ensure that the persons personal beliefs are respected. The crucial point is that the legal effects that informed consent has on the three perspectives overlap. Therefore, in order to understand the role of informed consent holistically, in this article I analyse how these perspectives relate to each other. This analysis shows that the relationship between die perspectives can vary depending on the interests that we intend to promote. If we intend to promote the freedom of research, then the material dimension can prevail, whilst if we focus our attention on the interests of individuals then the informational and the relational dimensions will prevail. The challenge is to find a good balance between these two extremes.
机译:在我的文章中,我讨论了知情同意在生物银行中的作用。我认为,了解同意的作用的基本问题是确定利益攸关方并确定我们打算促进这些利益中的一个。信息内容的定义仅代表后续步骤。为此,我从三个不同的角度分析了人类生物材料的法律地位:“材料”,“信息”和“关系”。知情同意会对这些观点产生不同的影响。从物质的角度来看,同意可以影响财产权在人体组织上的分配。从信息的角度来看,同意是允许控制个人数据的法律工具;从“关系”的角度来看,有可能通过同意确保尊重个人的信仰。关键点在于,知情同意对这三个方面的法律效力是重叠的。因此,为了从整体上理解知情同意的作用,在本文中,我将分析这些观点如何相互关联。该分析表明,不同视角之间的关系可能会有所不同,具体取决于我们打算促进的利益。如果我们打算促进研究自由,那么物质方面可以占上风,而如果我们将注意力集中在个人利益上,那么信息方面和关系方面将占上风。挑战是要在这两个极端之间找到良好的平衡。

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