Solidarity and justice as guiding principles in genomic research
Solidarity and justice as guiding principles in genomic research
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DOI：
10.1111/j.1467-8519.2007.00562.x
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发表时间：
2007-07-01
期刊：
影响因子：
2.2
通讯作者：
Pijnenburg, Martien
中科院分区：
文献类型：
--
作者：
Hoedemaekers, Rogeer;Gordijn, Bert;Pijnenburg, Martien
在基因组研究中，自由、知情、事先和明确同意的理想标准有时难以适用。这引起了人们的关注，即重要的基因组研究将受到限制。因此提出了不同的同意程序。本文明确探讨的问题，在基因组研究中，团结和正义的原则可以用来证明个人控制个人数据和生物样本的形式减少。在讨论了团结和正义的概念以及它们如何与医疗保健和基因组研究相关之后，我们研究了这些概念如何以及在何种情况下可以形成要求某些经济牺牲的强大道德基础。然后，我们研究这些原则可以证明同意程序偏离理想的标准。由于许多基因组研究预计不会带来直接的（临床）益处，我们还讨论了我们是否有义务为未来（尚未存在的）患者做出任何牺牲的问题。最后，我们制定了一些条件，必须满足自主性牺牲之前，可以合理地要求在基因组研究。
In genomic research the ideal standard of free, informed, prior and explicit consent is sometimes difficult to apply. This has raised concern that important genomic research will be restricted. Different consent procedures have therefore been proposed. This paper explicitly examines the question how, in genomic research, the principles of solidarity and justice can be used to justify forms of diminished individual control over personal data and bio-samples. After a discussion of the notions of solidarity and justice and how they can be related to health care and genomic research, we examine how and in which situations these notions can form a strong moral basis for demanding certain financial sacrifices. Then we examine when these principles can justify consent procedures which diverge from the ideal standard. Because much genomic research is not expected to lead to immediate (clinical) benefits we also discuss the question of whether we can be obliged to make any sacrifices for future (not yet existing) patients. We conclude with the formulation of a number of conditions that have to be met before autonomy sacrifices can be reasonably demanded in genomic research.