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首页> 外文期刊>Prevention science: the official journal of the Society for Prevention Research >Genomics, Big Data, and Broad Consent: a New Ethics Frontier for Prevention Science
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Genomics, Big Data, and Broad Consent: a New Ethics Frontier for Prevention Science

机译：基因组学，大数据和广泛同意：预防科学的新道德前沿

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摘要

Emerging technologies for analyzing biospecimens have led to advances in understanding the interacting role of genetics and environment on development and individual responsivity to prevention and intervention programs. The scientific study of gene-environment influences has also benefited from the growth of Big Data tools that allow linking genomic data to health, educational, and other information stored in large integrated datasets. These advances have created a new frontier of ethical challenges for scientists as they collect, store, or engage in secondary use of potentially identifiable information and biospecimens. To address challenges arising from technological advances and the expanding contexts in which potentially identifiable information and biospecimens are collected and stored, the Office of Human Research Protections has revised federal regulations for the protection of human subjects. The revised regulations create a new format, content, and transparency requirements for informed consent, including a new mechanism known as broad consent. Broad consent offers participants a range of choices regarding consent for the storage and future use of their personally identifiable data. These regulations have important implications for how prevention scientists and oversight boards acquire participant consent for the collection, storage, and future use of their data by other investigators for scientific purposes significantly different from the original study. This article describes regulatory changes and challenges affecting traditional informed consent for prevention research, followed by a description of the rationale and requirements for obtaining broad consent, and concludes with a discussion of future challenges involving ongoing transparency and protections for participants and their communities.
机译：用于分析生物谱的新兴技术导致了解遗传和环境对预防和干预计划的遗传和环境的相互作用。对基因环境影响的科学研究也有利于大数据工具的增长，允许将基因组数据链接到存储在大集成数据集中的健康，教育和其他信息。这些进展为科学家们创造了一个新的道德挑战前沿，因为它们收集，商店或从事潜在可识别信息和生物起草的二次使用。为了应对技术进步所带来的挑战以及收集和储存潜在可识别信息和生物开发的扩展背景，人类研究保护办公室已修订了保护人类受试者的联邦法规。修订后的法规为知情同意创造了一种新的格式，内容和透明度要求，包括称为广泛同意的新机制。广泛的同意提供了参与者关于储存和未来使用其个人可识别数据的同意的一系列选择。这些法规对预防科学家和监督委员会通过其他调查人员获得了对汇集，储存和未来对其数据的认可同意的重要意义，以获得与原始研究有明显不同的科学目的。本文介绍了影响预防研究的传统知情同意的监管变革和挑战，然后描述了获得广泛同意的理由和要求，并讨论了涉及参与者及其社区的持续透明和保护的未来挑战。

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