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

IF 1.3 Q3 ETHICS Asian Bioethics Review Pub Date : 2024-05-11 DOI:10.1007/s41649-024-00283-8

Hui Yun Chan, Hui Jin Toh, Tamra Lysaght

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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.

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健康研究中的跨司法管辖区数据传输：利益相关者对法律作用的看法

大型数据密集型健康研究计划受益于研究人员之间的合作，这些研究人员可能位于不同的机构和国际环境中。然而，不同司法管辖区的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巨大挑战。有关利益相关者对数据保护和隐私法认识的研究非常有限。我们的定性研究来自新加坡的一个大型项目，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。在我们的研究中，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传输方面的作用有不同的看法。主要的批评意见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。尽管有这些批评意见，与会者还是认识到数据保护法在支持跨境数据传输方面的重要性，并提出了一些措施来改善现有法律的局限性。这些措施包括加强现有法律框架、制定合同协议以及对滥用数据行为实施严厉惩罚。

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来源期刊

Asian Bioethics Review Multiple-

CiteScore

6.20

自引率

3.40%

发文量

期刊介绍： Asian Bioethics Review (ABR) is an international academic journal, based in Asia, providing a forum to express and exchange original ideas on all aspects of bioethics, especially those relevant to the region. Published quarterly, the journal seeks to promote collaborative research among scholars in Asia or with an interest in Asia, as well as multi-cultural and multi-disciplinary bioethical studies more generally. It will appeal to all working on bioethical issues in biomedicine, healthcare, caregiving and patient support, genetics, law and governance, health systems and policy, science studies and research. ABR provides analyses, perspectives and insights into new approaches in bioethics, recent changes in biomedical law and policy, developments in capacity building and professional training, and voices or essays from a student’s perspective. The journal includes articles, research studies, target articles, case evaluations and commentaries. It also publishes book reviews and correspondence to the editor. ABR welcomes original papers from all countries, particularly those that relate to Asia. ABR is the flagship publication of the Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore. The Centre for Biomedical Ethics is a collaborating centre on bioethics of the World Health Organization.