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首页> 外文期刊>Genetic testing and molecular biomarkers >Reforming Biobank Consent Policy: A Necessary Move Away from Broad Consent Toward Dynamic Consent
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Reforming Biobank Consent Policy: A Necessary Move Away from Broad Consent Toward Dynamic Consent

机译：改革生物银行同意书政策：从广泛同意书转向动态同意书的必要步骤

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摘要

The field of genomic-based medicine has power in numbers. With the increasing ability of new technology infrastructures to allow streamlined data sharing, there is a rising potential for networks of data to accelerate genomic-based translational research. Networks of registries and bio-banks are being formed that allow researchers access to more specimens and samples that further allow for studies of greater statistical significance (Kaye et ah, 2012). The summer of 2013 saw a call from the Patient Centered Outcomes Research Institute for "patient-powered research networks" and "clinical data research networks" with the hope that they will be woven into a national clinical research network. This increase in data sharing intensifies long-held concerns about what is traditionally described as privacy and effective informed consent. A shift from the current biobank (and its associated registry; however, for the sake of this article, we will limit our comments to biobanks) paradigm of broad consent to a digitally based system of dynamic consent can help alleviate concerns attached to open databases of information and effectively involve participants in the research process and trial results.
机译：基于基因组的医学领域具有强大的力量。随着新技术基础架构允许简化的数据共享的能力不断增强，数据网络具有越来越大的潜力来加速基于基因组的翻译研究。注册表和生物库的网络正在形成，使研究人员可以获取更多的标本和样本，从而进一步开展具有更大统计意义的研究（Kaye等，2012）。 2013年夏天，以患者为中心的结果研究所呼吁建立“以患者为动力的研究网络”和“临床数据研究网络”，希望将它们纳入全国临床研究网络。数据共享的增加加剧了人们对传统上称为隐私和有效知情同意的长期关注。从当前的生物库（及其相关注册表）转变为将基于广泛同意的范式转变为基于数字的动态同意系统，这有助于减轻对开放式数据库的关注信息，并使参与者有效地参与研究过程和试验结果。

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  • 来源
    《Genetic testing and molecular biomarkers》 |2013年第12期|855-856|共2页
  • 作者

    Dorit T. Stein; Sharon F. Terry;

  • 作者单位

    Genetic Alliance, Washington, District of Columbia,University of California, Los Angeles, Institute for Society and Genetics, Los Angeles, California;

    Genetic Alliance, Washington, District of Columbia,President & CEO Genetic Alliance 4301 Connecticut Avenue, NW Suite 404 Washington, DC 20008;

  • 收录信息 美国《科学引文索引》(SCI);美国《化学文摘》(CA);
  • 原文格式 PDF
  • 正文语种 eng
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