{"title":"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","authors":"Hui Yun Chan, Hui Jin Toh, Tamra Lysaght","doi":"10.1007/s41649-024-00283-8","DOIUrl":null,"url":null,"abstract":"<div><p>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.</p></div>","PeriodicalId":44520,"journal":{"name":"Asian Bioethics Review","volume":"16 4","pages":"663 - 682"},"PeriodicalIF":1.3000,"publicationDate":"2024-05-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41649-024-00283-8.pdf","citationCount":"0","resultStr":"{\"title\":\"Cross-jurisdictional Data Transfer in Health Research: Stakeholder Perceptions on the Role of Law\",\"authors\":\"Hui Yun Chan, Hui Jin Toh, Tamra Lysaght\",\"doi\":\"10.1007/s41649-024-00283-8\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div><p>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.</p></div>\",\"PeriodicalId\":44520,\"journal\":{\"name\":\"Asian Bioethics Review\",\"volume\":\"16 4\",\"pages\":\"663 - 682\"},\"PeriodicalIF\":1.3000,\"publicationDate\":\"2024-05-11\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://link.springer.com/content/pdf/10.1007/s41649-024-00283-8.pdf\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Asian Bioethics Review\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://link.springer.com/article/10.1007/s41649-024-00283-8\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q3\",\"JCRName\":\"ETHICS\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Asian Bioethics Review","FirstCategoryId":"1085","ListUrlMain":"https://link.springer.com/article/10.1007/s41649-024-00283-8","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"ETHICS","Score":null,"Total":0}
Cross-jurisdictional Data Transfer in Health Research: Stakeholder Perceptions on the Role of Law
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.
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.
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