迈向国际基因组研究数据共享行为准则。
Towards a data sharing Code of Conduct for international genomic research.
机构信息
Department of Human Genetics, McGill University, 740 Dr Penfield Avenue, Montreal, Quebec H3A 1A4, Canada.
出版信息
Genome Med. 2011 Jul 14;3(7):46. doi: 10.1186/gm262.
Data sharing is increasingly regarded as an ethical and scientific imperative that advances knowledge and thereby respects the contributions of the participants. Because of this and the ever-increasing amount of data access requests currently filed around the world, three groups have decided to develop data sharing principles specific to the context of collaborative international genomics research. These groups are: the international Public Population Project in Genomics (P3G), an international consortium of projects partaking in large-scale genetic epidemiological studies and biobanks; the European Network for Genetic and Genomic Epidemiology (ENGAGE), a research project aiming to translate data from large-scale epidemiological research initiatives into relevant clinical information; and the Centre for Health, Law and Emerging Technologies (HeLEX). We propose seven different principles and a preliminary international data sharing Code of Conduct for ongoing discussion.
数据共享越来越被视为一种伦理和科学的必要手段，可以促进知识的进步，从而尊重参与者的贡献。出于这个原因，以及目前全球范围内不断增加的数据访问请求，三个组织决定制定针对合作性国际基因组学研究背景的数据共享原则。这三个组织分别是：国际基因组学公共人群项目（P3G），一个参与大规模遗传流行病学研究和生物库的国际项目联盟；欧洲遗传和基因组流行病学网络（ENGAGE），一个旨在将大规模流行病学研究计划的数据转化为相关临床信息的研究项目；以及健康、法律和新兴技术中心（HeLEX）。我们提出了七条不同的原则和一个初步的国际数据共享行为准则，供进一步讨论。
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