Department of Environmental Medicine and Public Health, Legal Medicine Unit, University of Padua, Via Falloppio 50, 35121, Padua, Italy.
J Med Ethics. 2010 Dec;36(12):775-8. doi: 10.1136/jme.2010.037606. Epub 2010 Nov 8.
Biobanks are an important resource for medical research. Genetic research on biological material from minors can yield valuable information that can improve our understanding of genetic-environmental interactions and the genesis and development of early onset genetic disorders. The major ethical concerns relating to biobanks concern consent, privacy, confidentiality, commercialisation, and the right to know or not to know. However, research on paediatric data raises specific governance and ethical questions with regard to consent and privacy. We have considered the Italian normative context focusing on what is mentioned in each document on the ethical and legal requirements that guarantee the rights of minors. We found out that there is no systematic reflection on the ethical and policy issues arising from the participation of minors in biobank research. Moreover, we have focused on the same aspects for the new Italian Law on the National Forensic Biobank.
生物银行是医学研究的重要资源。对未成年人生物材料的遗传研究可以产生有价值的信息，有助于我们更好地理解遗传-环境相互作用以及早发性遗传疾病的发生和发展。与生物银行相关的主要伦理问题涉及同意、隐私、保密、商业化以及知情权或不知情权。然而，儿科数据的研究引发了与同意和隐私相关的特定治理和伦理问题。我们已经考虑了意大利的规范背景，重点关注每份文件中提到的、保障未成年人权利的伦理和法律要求。我们发现，对于未成年人参与生物银行研究所产生的伦理和政策问题，没有系统的思考。此外，我们还针对新的意大利法医生物银行国家法关注了相同的方面。
