韩国生物大数据项目:治理和数据利用的重要性和挑战。

IF 2.1 Q3 MEDICAL INFORMATICS
Healthcare Informatics Research Pub Date : 2025-07-01 Epub Date: 2025-07-31 DOI:10.4258/hir.2025.31.3.226
Jae Sun Kim, Dae Un Hong
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引用次数: 0

摘要

目标:十多年来,韩国政府一直在开发国家综合生物数据建设项目(NIBDCP),旨在建立一个收集、生产、提供和利用生物数据的综合框架。本研究考察了项目的结构、特征和治理框架,以确定成功实施的关键建议。方法:对NIBDCP进行系统分析,重点分析治理结构、数据管理协议和操作系统。评估强调了机构作用、同意要求、可持续数据生产和研究人员可及性,确定了需要改进的领域。结果:分析确定了需要加强的四个关键领域。第一,治理框架应使秘书处能够明确界定机构职责,促进机构间协作。其次,数据收集协议必须满足广泛的同意要求,包括提供充分的信息,明确同意二次使用,分项撤回选项,保护未成年人的权利,以及改善参与者的便利性。第三,建立系统和可持续的数据生产框架至关重要,重点是数据质量、标准化和可扩展性。最后,数据提供和利用系统应通过确保数据开放、维护统一的机构审查委员会系统和简化申请和使用流程来提高研究人员的可访问性。结论:加强治理、坚持数据收集中的道德标准、确保可持续的数据生产和优化研究人员的可及性是NIBDCP成功的关键。这些措施将有助于实现该项目的目标,并为韩国的生物数据治理和利用建立一个健全的模式。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Korea's Bio Big Data Project: Importance and Challenges of Governance and Data Utilization.

Objectives: The Korean government has been developing the National Integrated Biological Data Construction Project (NIBDCP) for over a decade, aiming to establish a comprehensive framework for the collection, production, provision, and utilization of biological data. This study examines the project's structure, features, and governance framework to identify key recommendations for successful implementation.

Methods: A systematic analysis of the NIBDCP was conducted, focusing on governance structures, data management protocols, and operational systems. The evaluation emphasized institutional roles, consent requirements, sustainable data production, and researcher accessibility, identifying areas for improvement.

Results: The analysis identified four critical areas requiring enhancement. First, the governance framework should empower the Secretariat to clearly define institutional responsibilities and facilitate inter-agency collaboration. Second, data collection protocols must address broad consent requirements, including provision of adequate information, explicit consent for secondary use, itemized withdrawal options, protection of minors' rights, and improved participant convenience. Third, establishing a systemic and sustainable data production framework is essential, with an emphasis on data quality, standardization, and scalability. Finally, the system for data provision and utilization should enhance researcher accessibility by ensuring data openness, maintaining a unified Institutional Review Board system, and streamlining application and usage processes.

Conclusions: Strengthening governance, upholding ethical standards in data collection, ensuring sustainable data production, and optimizing researcher accessibility are essential for the success of the NIBDCP. These measures will help achieve the project's goals and establish a robust model for biological data governance and utilization in Korea.

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来源期刊
Healthcare Informatics Research
Healthcare Informatics Research MEDICAL INFORMATICS-
CiteScore
4.90
自引率
6.90%
发文量
44
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