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健康研究中的跨辖区数据转移:利益相关者对法律作用的看法。

Cross-jurisdictional Data Transfer in Health Research: Stakeholder Perceptions on the Role of Law.

作者信息

Chan Hui Yun, Toh Hui Jin, Lysaght Tamra

机构信息

Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore.

出版信息

Asian Bioeth Rev. 2024 May 11;16(4):663-682. doi: 10.1007/s41649-024-00283-8. eCollection 2024 Oct.

Abstract

Large data-intensive health research programmes benefit from collaboration amongst researchers who may be located in different institutions and international contexts. However, complexities in navigating privacy frameworks and data protection laws across various jurisdictions pose significant challenges to researchers seeking to share or transfer data outside of institutional boundaries. Research on the awareness of data protection and privacy laws amongst stakeholders is limited. Our qualitative study, drawn from a larger project in Singapore, revealed insights into stakeholders' perceptions of the role of law in cross-national health data research. Stakeholders in our study demonstrated a range of perceptions regarding the role of data protection law in governing the collection and transfer of health data for research. The main criticisms included inadequate legal protection to data and lack of uniformed data protection standards. Despite these criticisms, participants recognised the importance of data protection law in supporting cross-border data transfers and proposed measures to improve perceived limitations of existing laws. These measures include strengthening existing legal framework, establishing contractual agreements and imposing severe punishments for data misuse.

摘要

大型数据密集型健康研究项目受益于可能位于不同机构和国际环境中的研究人员之间的合作。然而,在不同司法管辖区内应对隐私框架和数据保护法律的复杂性,给寻求在机构边界之外共享或转移数据的研究人员带来了重大挑战。关于利益相关者对数据保护和隐私法律的认识的研究有限。我们从新加坡的一个更大的项目中抽取的定性研究,揭示了利益相关者对法律在跨国健康数据研究中的作用的看法。我们研究中的利益相关者对数据保护法在管理用于研究的健康数据的收集和转移方面的作用表现出一系列看法。主要批评包括对数据的法律保护不足以及缺乏统一的数据保护标准。尽管有这些批评,参与者认识到数据保护法在支持跨境数据传输方面的重要性,并提出了改善对现有法律的感知限制的措施。这些措施包括加强现有法律框架、建立合同协议以及对数据滥用实施严厉惩罚。

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