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Hum Genet. 2011 Sep;130(3):415-23. doi: 10.1007/s00439-011-1049-y. Epub 2011 Jun 25.
Early biomedical research focused primarily on the study of specific diseases or sets of diseases within small groups of living research participants. Accordingly, the first ethical frameworks governing biomedical research addressed short-term, limited-scope research involving living research participants. Due to recent interest in longitudinal population studies and biobanking, research is increasingly long term. This shift raises several ethical and legal issues concerning the impact of a participant's death on research. This paper offers an overview of these issues in the context of longitudinal biobanking genetic research. Our first part outlines the legal and ethical frameworks that govern the effect of the participants' death on consent. This will be followed by an analysis of the legal and ethical frameworks that govern the secondary use of deceased participants' data and samples and the return of deceased participants' individual research results to biological family members. In our second part, we will review the current literature and discuss the above mentioned issues using the bioethics "principlism" theory before concluding.
早期的生物医学研究主要集中在对小部分活着的研究参与者中特定疾病或疾病集合的研究。因此，最初管理生物医学研究的伦理框架涉及涉及活着的研究参与者的短期、有限范围的研究。由于最近对纵向人群研究和生物库的兴趣增加，研究的时间跨度越来越长。这一转变引发了关于参与者死亡对研究影响的若干伦理和法律问题。本文在纵向生物库遗传研究的背景下概述了这些问题。我们的第一部分概述了管理参与者死亡对同意影响的法律和伦理框架。接下来将分析管理已故参与者数据和样本的二次使用以及将已故参与者的个人研究结果返还给生物家族成员的法律和伦理框架。在第二部分，我们将使用生物伦理学“原则主义”理论回顾当前文献，并讨论上述问题，然后得出结论。
