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Abstract：
Large sets of data and human specimens, such as blood, tumour tissue and DNA, are deposited in biobanks for research purposes, preferably for long periods of time and with broadly defined research aims. Our research focuses on the retention of data and biological materials obtained from children. However important such paediatric biobanks may be, the privacy interests of the children involved and the related risks may not be ignored. The privacy issues arising from paediatric biobanks are the central focus of this article. We first review the international regulations that apply to biobanks and then summarise viewpoints expressed by experts in a round-table discussion. We confine ourselves here to two normative questions: (1) How much control should children\'s parents or legal representatives, and later the children themselves, have over the stored materials and data? (2) What should be done if research findings emerge that have serious implications for a child\'s health?
CONCLUSIONS: On the basis of international legal standards and the views of experts, involved in paediatric biobanking, we argue that biological material of children may only be stored in a biobank for scientific purposes if parents provide their explicit consent, the child is re-contacted at 16 or 18 years of age to reconsider storage and use of its material, and the biobank maintains a limited policy in disclosure of individual research findings to the child\'s parents. What is Known: • Increasingly, biological material of children is stored in biobanks for research purposes. • Clear standards on the conditions under which children\'s cells or tissues may be stored and used are lacking. What is New: • According to experts, storage and use of children\'s materials should only be allowed if performed in accordance with appropriate consent procedures and feedback policies.
CONCLUSIONS: On the basis of international legal standards and the views of experts, involved in paediatric biobanking, we argue that biological material of children may only be stored in a biobank for scientific purposes if parents provide their explicit consent, the child is re-contacted at 16 or 18 years of age to reconsider storage and use of its material, and the biobank maintains a limited policy in disclosure of individual research findings to the child\'s parents. What is Known: • Increasingly, biological material of children is stored in biobanks for research purposes. • Clear standards on the conditions under which children\'s cells or tissues may be stored and used are lacking. What is New: • According to experts, storage and use of children\'s materials should only be allowed if performed in accordance with appropriate consent procedures and feedback policies.
摘要：
大量的数据和人体标本,比如血，肿瘤组织和DNA，存放在生物库中用于研究目的，最好是长时间的，并有广泛定义的研究目标。我们的研究重点是保留从儿童那里获得的数据和生物材料。无论这种儿科生物库多么重要，所涉及儿童的隐私利益和相关风险可能不容忽视。儿科生物库引起的隐私问题是本文的重点。我们首先回顾适用于生物银行的国际法规，然后总结专家在圆桌讨论中表达的观点。我们在这里局限于两个规范性问题:(1)儿童的父母或法定代表人应该控制多少,后来孩子们自己，（2）如果出现对儿童健康有严重影响的研究结果，该怎么办？
结论：根据国际法律标准和专家意见，参与儿科生物移植，我们认为，如果父母明确同意，儿童的生物材料只能出于科学目的储存在生物库中，儿童在16岁或18岁时重新联系，以重新考虑其材料的储存和使用，生物库在向孩子的父母披露个人研究结果方面保持有限的政策。什么是已知的：•越来越多，儿童的生物材料储存在生物库中用于研究目的。•缺乏关于儿童细胞或组织储存和使用条件的明确标准。最新动态：•根据专家的说法，只有在按照适当的同意程序和反馈政策执行的情况下，才应允许储存和使用儿童材料。
结论：根据国际法律标准和专家意见，参与儿科生物移植，我们认为，如果父母明确同意，儿童的生物材料只能出于科学目的储存在生物库中，儿童在16岁或18岁时重新联系，以重新考虑其材料的储存和使用，生物库在向孩子的父母披露个人研究结果方面保持有限的政策。什么是已知的：•越来越多，儿童的生物材料储存在生物库中用于研究目的。•缺乏关于儿童细胞或组织储存和使用条件的明确标准。最新动态：•根据专家的说法，只有在按照适当的同意程序和反馈政策执行的情况下，才应允许储存和使用儿童材料。
