Alexander Bernier, Bartha M Knoppers, Patrick Bermudez, Michael J S Beauvais, Adrian Thorogood, Alan Evans
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引用次数: 0
摘要
科学研究界在实施数据共享战略时追求双重目标。这些团体试图最大限度地提高生物医学数据的可获取性,以便下游研究使用,从而推进开放科学目标的实现。与此同时,这些团体还通过数据管理措施和将适当的风险披露纳入知情同意程序来保障研究参与者的利益。加拿大开放神经科学平台(Canadian Open Neuroscience Platform,CONP)召集了一个由生物伦理学、神经伦理学和法律专家组成的伦理与治理委员会,以开发整体政策工具、组织方法和技术支持,使数据开放治理符合伦理和法律规范。CONP 采用了新颖的平台治理方法,有利于数据的全面开放,并通过使用强大的去标识化流程和知情同意实践使其合法化。CONP 的经验被阐述为其他开放科学工作进一步借鉴的潜在模板。这些经验强调了知情同意指导、去身份化实践、伦理法律元数据、平台级规范以及商业化和出版政策,这些都是开放数据治理实用方法的主要支柱。国家科学委员会采用的管理方法是一个可行的模式,可供更广泛的神经科学和开放科学界采用,以完全开放存取的方式共享数据。
Open Data governance at the Canadian Open Neuroscience Platform (CONP): From the Walled Garden to the Arboretum.
Scientific research communities pursue dual imperatives in implementing strategies to share their data. These communities attempt to maximize the accessibility of biomedical data for downstream research use, in furtherance of open science objectives. Simultaneously, such communities safeguard the interests of research participants through data stewardship measures and the integration of suitable risk disclosures to the informed consent process. The Canadian Open Neuroscience Platform (CONP) convened an Ethics and Governance Committee composed of experts in bioethics, neuroethics, and law to develop holistic policy tools, organizational approaches, and technological supports to align the open governance of data with ethical and legal norms. The CONP has adopted novel platform governance methods that favor full data openness, legitimated through the use of robust deidentification processes and informed consent practices. The experience of the CONP is articulated as a potential template for other open science efforts to further build upon. This experience highlights informed consent guidance, deidentification practices, ethicolegal metadata, platform-level norms, and commercialization and publication policies as the principal pillars of a practicable approach to the governance of open data. The governance approach adopted by the CONP stands as a viable model for the broader neuroscience and open science communities to adopt for sharing data in full open access.
期刊介绍:
GigaScience seeks to transform data dissemination and utilization in the life and biomedical sciences. As an online open-access open-data journal, it specializes in publishing "big-data" studies encompassing various fields. Its scope includes not only "omic" type data and the fields of high-throughput biology currently serviced by large public repositories, but also the growing range of more difficult-to-access data, such as imaging, neuroscience, ecology, cohort data, systems biology and other new types of large-scale shareable data.