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Ethical and deontological aspects of pediatric biobanks: the situation in Italy.
Cell and Tissue Banking ( IF 1.5 ) Pub Date : 2020-04-20 , DOI: 10.1007/s10561-020-09833-4
Nunzia Cannovo 1 , Rosa Guarino 2 , Piergiorgio Fedeli 3
Affiliation  

While pediatric biobanks are a precious resource for scientific research to improve our understanding of genetic pathologies, the value of these studies should be considered together with the value of the privacy rights of pediatric donors, as they are particularly vulnerable and in many cases unable to discern the meaning of the donation of biological material and the related implications of the research. Thus this work calls for reflection on the numerous ethical and legal issues involved in the development and regulation of these biobanks. In particular, it explores what form of consent best balances the intangible rights of the minor, on the one hand, and the development of technological progress and scientific research, on the other, and examines the implications of the collection of biological material of minors in biobanks. It focuses on solutions to bridge the gaps in current Italian legislation, especially in light of the current lack of attention to the interests of fragile subjects. In addition, this work presents an overview of the pediatric biobanks in Italy.

中文翻译:

儿科生物库的伦理学和义务学方面:意大利的情况。

虽然儿科生物库是科学研究的宝贵资源,可增进我们对遗传病理学的理解,但应将这些研究的价值与儿科捐赠者的隐私权的价值一起考虑,因为它们特别脆弱,在许多情况下无法辨别捐赠生物材料的含义以及研究的相关含义。因此,这项工作要求对这些生物库的开发和监管中涉及的众多道德和法律问题进行反思。特别是,它探讨了哪种形式的同意一方面可以最佳地平衡未成年人的无形权利,另一方面可以更好地平衡技术进步和科学研究的发展,并探讨收集未成年人的生物材料的意义。生物库。它着眼于弥合意大利现行法律空白的解决方案,尤其是考虑到当前缺乏对脆弱主体利益的关注。此外,这项工作概述了意大利的儿科生物库。
更新日期:2020-04-20
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