“耐心中心”:一篇社论

C. Corradetti, P. Pramstaller, D. Mascalzoni
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引用次数: 0

摘要

2009年3月12日,《时代》杂志用一整期的篇幅列出了未来十大改变世界的想法,其中特别关注了生物银行。这篇文章提出了一个非常重要和具有挑战性的问题:从非常昂贵的生物材料存储中是否可以合理地预期有好处,如果有的话,这些好处是什么?我们所坚持的是确定以下亟待解决的道德问题:数据的隐私和安全。深化这些与生物银行企业相关的社会和伦理方面的需要导致了“以患者为中心”会议的组织。该会议于2011年9月28日至29日在罗马举行,在意大利大学和研究部的财政支持下,由博尔扎诺欧洲科学院生物医学中心组织。本期特刊介绍了那次会议,这篇社论介绍了我们开展这项工作的动机。客座编辑的愿望和希望是,这样的讨论将有助于通过解决新的挑战和帮助思考新的解决方案来开辟新的研究和政策议程。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
"Patientcentricity": An Editorial
Abstract On 12 March 2009 Time dedicated an entire issue indicating the top ten world-changing ideas for the next future and among these a special attention was dedicated to biobanks. The article asks a very important and challenging question: are there benefits that can be reasonably expected from very costly biomaterial storage and — if yes — which kind of benefits are these? What is insisted upon is the identification of the following burning ethical issue: privacy and security of data.The need of deepening these social and ethical aspects related to the biobank enterprise lead to the organization of the conference on “patientcentricity”. The conference took place in Rome on 28-29 September 2011 and it was organized by the Center of Biomedicine of the European Academy of Bolzano thanks to the financial support of the Italian Ministry of University and Research.This special issue introduces that conference, and this editorial introduces our motivations for this work.The wish and hope of the guest editors is that such discussions will contribute to opening new research and policy agendas by addressing new challenges and helping out in thinking new solutions.
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