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Developing a policy for paediatric biobanks: Principles for good practice

机译:制定儿科生物库政策:良好实践原则

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The participation of minors in biobank research can offer great benefits for science and health care. However, as minors are a vulnerable population they are also in need of adequate protective measures when they are enrolled in research. Research using biobanked biological samples from children poses additional ethical issues to those raised by research using adult biobanks. For example, small children have only limited capacity, if any, to understand the meaning and implications of the research and to give a documented agreement to it. Older minors are gradually acquiring this capacity. We describe principles for good practice related to the inclusion of minors in biobank research, focusing on issues related to benefits and subsidiarity, consent, proportionality and return of results. Some of these issues are currently heavily debated, and we conclude by providing principles for good practice for policy makers of biobanks, researchers and anyone involved in dealing with stored tissue samples from children. Actual implementation of the principles will vary according to different jurisdictions.
机译:未成年人参与生物库研究可以为科学和卫生保健带来巨大好处。但是,由于未成年人是弱势群体,因此在入研究时也需要采取适当的保护措施。与使用成人生物库进行的研究相比,使用来自儿童的生物库生物样品进行的研究提出了其他伦理问题。例如,小孩子只有有限的能力(如果有的话)来理解研究的意义和含义并给出书面协议。未成年人正在逐步获得这种能力。我们描述了有关将未成年人纳入生物库研究的良好实践原则,重点关注与收益和补贴,同意,比例和结果回报相关的问题。其中一些问题目前正在激烈辩论中,最后我们为生物银行的政策制定者,研究人员以及参与处理来自儿童的存储组织样本的任何人提供了良好做法的原则。原则的实际实施将根据不同的司法管辖区而有所不同。

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