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“数据是新的石油”:公民科学与知情同意在研究人员处理具有经济价值资源的时代

"Data is the new oil": citizen science and informed consent in an era of researchers handling of an economically valuable resource.

机构信息

Department of Law, Maynooth University, Kildare, Ireland.

School of Sociology, University College Dublin, Dublin, Ireland.

出版信息

Life Sci Soc Policy. 2021 Dec 10;17(1):9. doi: 10.1186/s40504-021-00118-6.

Abstract

As with other areas of the social world, academic research in the contemporary healthcare setting has undergone adaptation and change. For example, research methods are increasingly incorporating citizen participation in the research process, and there has been an increase in collaborative research that brings academic and industry partners together. There have been numerous positive outcomes associated with both of these growing methodological and collaborative processes; nonetheless, both bring with them ethical considerations that require careful thought and attention. This paper addresses the ethical considerations that research teams must consider when using participatory methods and/or when working with industry and outlines a novel informed consent matrix designed to maintain the high ethical standard to which academic research in the healthcare arena has traditionally adhered.

摘要

与社会世界的其他领域一样,当代医疗保健环境中的学术研究也经历了适应和变革。例如,研究方法越来越多地将公民参与纳入研究过程,合作研究也在增加,将学术和行业合作伙伴聚集在一起。这两种日益增长的方法和合作过程都带来了许多积极的结果;尽管如此,它们都带来了需要仔细考虑和关注的伦理问题。本文探讨了研究团队在使用参与式方法时必须考虑的伦理问题,以及在与行业合作时必须考虑的伦理问题,并概述了一种新颖的知情同意矩阵,旨在保持医疗保健领域学术研究传统上一直坚持的高标准伦理。

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