Data Sovereignty and Genomic Data Across Borders: Taiwan in a Comparative Perspective

Chih-hsing Ho ()
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Chih-hsing Ho: Academia Sinica

A chapter in International Transfers of Health Data, 2024, pp 139-157 from Springer

Abstract: Abstract This chapter delves into the critical role of genomic data sharing in advancing scientific researchData sovereignty, amidst the backdrop of varying international legal frameworks and the concerted efforts of global consortia. Through a detailed examination of regulations such as the European Union's General Data Protection Regulation (GDPR) and the European Health Data Space (EHDS)European Health Data Space (EHDS), aimed at fostering a harmonized data ecosystem, alongside the initiatives of the Global Alliance for Genomics and Health (GA4GH)Global Alliance for Genomics and Health (GA4GH), we navigate the complex landscape of genomic data exchange. The case study of Taiwan’sTaiwan approach to genomic data governance illuminates the intricate balance required between protecting data sovereignty and promoting global data sharing. This exploration highlights the importance of a nuanced strategy that honors both the autonomy of nations and individuals over their genomic data, while also encouraging the cooperative exchange essential for scientific breakthroughs. The insights gained from international experiences, including Taiwan'sTaiwan, offer crucial guidance for developing policies that support the ethical and equitable distribution of genomic data. Such policies are vital for harnessing the potential of genomic research in enhancing global health outcomes and fostering the collective advancement of knowledge.

Keywords: Genomic data; GDPR; EHDS; GA4GH; Data sharing; Taiwan (search for similar items in EconPapers)
Date: 2024
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DOI: 10.1007/978-981-97-9983-1_7

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