Dynamic consent: a patient interface for twenty-first century research networks.
Dynamic consent: a patient interface for twenty-first century research networks.
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DOI：
10.1038/ejhg.2014.71
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发表时间：
2015-02
影响因子：
5.2
通讯作者：
Melham, Karen
中科院分区：
文献类型：
--
作者：
Kaye, Jane;Whitley, Edgar A.;Lund, David;Morrison, Michael;Teare, Harriet;Melham, Karen
信息技术的应用正在改变生物医学研究，信息技术允许以前所未有的规模共享更多数据。然而，参与参与者的方法并没有跟上研究能力的变化。在全球范围内以数字方式共享信息的时代，知情同意机制仍然是静态的、基于纸张的，并围绕国界和法律框架进行组织。动态同意（DC）既是一个具体的项目，也是一个更广泛的概念，提供了一种新的同意方法；旨在满足二十一世纪研究领域的需求。 DC 的核心是一个个性化的数字通信界面，它连接研究人员和参与者，使参与者处于决策的核心。该界面促进了双向沟通，以激发更多参与、知情和科学素养的参与者群体，个人可以在其中定制和管理自己的同意偏好。 DC 的技术架构包括可以安全加密敏感数据的组件，并允许参与者同意偏好在与第三方共享时携带其数据和样本。除了提高透明度和公众信任之外，该系统还可以简化招募流程并实现更有效的参与者重新联系，从而使研究人员受益。 DC 主要是在生物样本库背景下开发的，但它在其他领域也具有多种用途的潜在应用。
Biomedical research is being transformed through the application of information technologies that allow ever greater amounts of data to be shared on an unprecedented scale. However, the methods for involving participants have not kept pace with changes in research capability. In an era when information is shared digitally at the global level, mechanisms of informed consent remain static, paper-based and organised around national boundaries and legal frameworks. Dynamic consent (DC) is both a specific project and a wider concept that offers a new approach to consent; one designed to meet the needs of the twenty-first century research landscape. At the heart of DC is a personalised, digital communication interface that connects researchers and participants, placing participants at the heart of decision making. The interface facilitates two-way communication to stimulate a more engaged, informed and scientifically literate participant population where individuals can tailor and manage their own consent preferences. The technical architecture of DC includes components that can securely encrypt sensitive data and allow participant consent preferences to travel with their data and samples when they are shared with third parties. In addition to improving transparency and public trust, this system benefits researchers by streamlining recruitment and enabling more efficient participant recontact. DC has mainly been developed in biobanking contexts, but it also has potential application in other domains for a variety of purposes.
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