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从国家角度看国际生物银行的法律和伦理后果:德国 BMB-EUCoop 项目。

Legal and ethical consequences of international biobanking from a national perspective: the German BMB-EUCoop project.

机构信息

RAe Goebel & Scheller, Bad Homburg, Germany.

出版信息

Eur J Hum Genet. 2010 May;18(5):522-5. doi: 10.1038/ejhg.2009.214. Epub 2009 Dec 2.

Abstract

The international transfer of human biomaterial and data has become a prerequisite for collaborative biomedical research to be successful. However, although a national legal framework for 'biobanking' has already been formulated in many countries, little is known about how an international exchange of data and samples might affect the legal position of national biobanks and their donors. The German Telematics Platform and the Competence Network 'Congenital Heart Defects' jointly instigated a project (BMB-EUCoop) to (i) identify and assess the legal risks ensuing for biobanks and their donors in the context of Europe-wide research collaborations, (ii) devise practical recommendations to minimize or avoid these risks, and (iii) provide generic informational text, contracts and agreements to facilitate their practical implementation. Four different countries were included in the study; namely, the UK, Netherlands, Austria and Switzerland. The results of the study indicate that the degree of similarity between legal systems in different countries varies according to the respective field of jurisdiction. Although personality and property rights have long been enshrined in virtually identical pieces of law, the applicable medical professional regulations were found to be somewhat heterogeneous. Furthermore, clear-cut differences were often found to be lacking between regulations that reflect either 'soft law' or the nationally binding 'hard law' that has emerged from it. In view of the potential ambiguities, the experts uniformly concluded that the rights and interests of national (in this case, German) biobanks and their donors would be best protected by explicitly addressing any uncertainties in formal contractual agreements.

摘要

人体生物材料和数据的国际转移已成为合作开展生物医学研究取得成功的前提条件。然而,尽管许多国家已经制定了国家层面的“生物银行”法律框架,但对于数据和样本的国际交流可能如何影响国家生物银行及其捐赠者的法律地位,人们知之甚少。德国远程信息处理平台和先天性心脏缺陷能力网络共同发起了一个项目(BMB-EUCoop),以(i)确定和评估在欧洲范围内的研究合作背景下生物银行及其捐赠者面临的法律风险,(ii)制定切实可行的建议以最小化或避免这些风险,以及(iii)提供通用信息文本、合同和协议以促进其实际实施。该研究纳入了四个不同的国家,即英国、荷兰、奥地利和瑞士。研究结果表明,不同国家法律体系的相似程度因各自的管辖领域而异。尽管人格权和财产权早已被纳入几乎相同的法律中,但适用的医疗专业法规却存在一定的异质性。此外,反映“软法”或由此产生的具有约束力的“硬法”的法规之间往往缺乏明确的区别。鉴于潜在的模糊性,专家一致认为,通过在正式合同协议中明确解决任何不确定性,最能保护国家(在这种情况下为德国)生物银行及其捐赠者的权益。

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The regulation of biobanks in Spain.
Rev Derecho Genoma Hum. 2008 Jul-Dec(29):169-88.
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Biobanking for Europe.欧洲生物样本库
Brief Bioinform. 2008 Jan;9(1):14-24. doi: 10.1093/bib/bbm050. Epub 2007 Oct 23.
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A legal framework for biobanking: the German experience.生物样本库的法律框架:德国的经验
Eur J Hum Genet. 2007 May;15(5):528-32. doi: 10.1038/sj.ejhg.5201810. Epub 2007 Mar 14.

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