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Dynamic-informed consent: A potential solution for ethical dilemmas in population sequencing initiatives

机译:动态知情同意:人口测序计划中道德困境的潜在解决方案

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摘要

While the majority of population-level genome sequencing initiatives claim to follow the principles of informed consent, the requirements for informed consent have not been-well defined in this context. In fact, the implementation of informed consent differs greatly across these initiatives - spanning broad consent, blanket consent, and tiered consent among others. As such, this calls for an investigation into the requirements for consent to be “informed” in the context of population genomics. One particular strategy that claims to be fully informed and to continuously engage participants is called “dynamic consent”. Dynamic consent is based on a personalised communication platform that aims to facilitate the consent process. It is oriented to support continuous two-way communication between researchers and participants. In this paper, we analyze the requirements of informed consent in the context of population genomics, review various current implementations of dynamic consent, assess whether they fulfill the requirement of informed consent, and, in turn, enable participants to make autonomous and informed choices on whether or not to participate in research projects.
机译:虽然大多数人群水平的基因组测序计划都声称遵循了知情同意的原则,但在这种情况下,对知情同意的要求还没有很好地定义。实际上,在这些倡议中,知情同意的实施有很大不同-涵盖广泛同意,一揽子同意和分层同意。因此,这要求对在人口基因组学背景下“知情”同意的要求进行调查。一种声称可以充分了解情况并不断吸引参与者参与的特殊策略称为“动态同意”。动态同意基于旨在促进同意过程的个性化通信平台。它旨在支持研究人员和参与者之间的持续双向交流。在本文中,我们分析了人口基因组学背景下的知情同意的要求,回顾了当前动态同意的各种实现,评估它们是否满足知情同意的要求,进而使参与者能够在以下方面做出自主和知情的选择:是否参加研究项目。

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