Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine and Health Sciences, McGill University, 740, Dr Penfield Ave, suite 5200, Montréal, Québec H3A 0G1, Canada.
McGill Centre for Integrative Neuroscience, Montreal Neurological Institute, McGill University, Montréal, Québec H3A 2B4, Canada.
Gigascience. 2024 Jan 2;13. doi: 10.1093/gigascience/giad114.
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.
科学研究社区在实施数据共享策略时,面临着双重要求。这些社区试图通过开放科学的目标,使生物医学数据尽可能容易地被下游研究利用。同时,这些社区通过数据管理措施和将适当的风险披露纳入知情同意过程,来保护研究参与者的利益。加拿大开放神经科学平台(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和治理委员会,制定了全面的政策工具、组织方法和技术支持,以调整数据的开放治理,使其符合伦理和法律规范。CONP 采用了新颖的平台治理方法,通过使用强大的去识别化过程和知情同意实践,使全面的数据开放合法化。CONP 的经验可以作为其他开放科学努力的潜在模板,进一步发展。这一经验突出了知情同意指导、去识别化实践、伦理法律元数据、平台级规范以及商业化和出版政策,作为开放数据治理的可行方法的主要支柱。CONP 采用的治理方法为更广泛的神经科学和开放科学社区提供了一种可行的模型,以实现全面开放获取的数据共享。