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An ethical dilemma

机译:道德困境

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摘要

For the biotechnology industry, data that cover the health and genetics of a population can represent a treasure-trove of information. But the marriage of business and such public data is, at best, uneasy. Conflicts over informed consent and privacy have, for example, overshadowed plans by Reykjavik-based deCODE Genetics to establish a health-sector database covering most of Iceland's population. So it was with great fanfare a few years ago that the leading scientific press welcomed a new Swedish biotechnology company: UmanGenomics. Promising that its foundations would be based on popular consent, and pledging an ethical approach to the data it would access, including the public sharing of results, UmanGenomics was promoted as "a model of how public tissue banks should interact with the biotech industry". The biobank in question was created during a health-intervention campaign in the northern Swedish county of Vaesterbotten. During the project, clinical researchers at Umea University collected and collated lifestyle and health data, including blood samples, for a significant proportion of the county's population.
机译:对于生物技术行业而言,涵盖人群健康和遗传信息的数据可以代表信息的宝库。但是,企业与此类公共数据的结合充其量是令人不安的。例如,在知情同意和隐私方面的冲突使位于雷克雅未克的deCODE Genetics计划建立覆盖冰岛大部分人口的卫生部门数据库的计划蒙上了阴影。因此,几年前,领先的科学媒体大张旗鼓地欢迎了一家新的瑞典生物技术公司:UmanGenomics。 UmanGenomics承诺其基础将建立在公众同意的基础上,并承诺对其访问的数据(包括结果的公开分享)采取道德方法,因此被提倡为“公共组织银行应如何与生物技术行业互动的模型”。有问题的生物库是在瑞典北部的Vaesterbotten县的一项健康干预运动中创建的。在该项目期间,于默奥大学的临床研究人员收集并整理了该县很大一部分人口的生活方式和健康数据,包括血液样本。

著录项

  • 来源
    《Nature》 |2003年第6954期|p.123-124|共2页
  • 作者

    Hilary Rose;

  • 作者单位

    City University, 4 Lloyd Square, London WC1X 9BA, UK;

  • 收录信息 美国《科学引文索引》(SCI);美国《工程索引》(EI);美国《生物学医学文摘》(MEDLINE);美国《化学文摘》(CA);
  • 原文格式 PDF
  • 正文语种 eng
  • 中图分类 自然科学总论;
  • 关键词

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