期刊
EUROPEAN JOURNAL OF HUMAN GENETICS
卷 21, 期 1, 页码 2-7出版社
NATURE PUBLISHING GROUP
DOI: 10.1038/ejhg.2012.99
关键词
-
资金
- FWO Flanders [G029107]
- FP7 EU projects: BioSHaRE-EU (GA) Biobank Standardisation and Harmonisation for Research Excellence in the European Union
- EU infrastructure project BBMRI (Pan-European Biobanking and Biomolecular Resources Research Infrastructure) [FP7-212111]
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. European Journal of Human Genetics (2013) 21, 2-7; doi: 10.1038/ejhg.2012.99; published online 20 June 2012
作者
我是这篇论文的作者
点击您的名字以认领此论文并将其添加到您的个人资料中。
推荐
暂无数据