Navigating Legal and Ethical Boundaries: Safeguarding Personal Health Data in International Research Collaboration

[1] Carter, P., Laurie, G. T., & Dixon-Woods, M. (2015). The social license for research: Why care. Journal of Medical Ethics, 41(5), 406–407. Search in Google Scholar

[2] Zhejiang Digital Healthcare Technology Research Institute. (2019). White paper on health and medical data governance (pp. 12–14). Search in Google Scholar

[3] Kayyali, B., Knott, D., & Van Kuiken, S. (2013). The big-data revolution in US health care: Accelerating value and innovation. McKinsey & Company. Search in Google Scholar

[4] Dilsizian, S. E., & Siegel, E. L. (2014). Artificial intelligence in medicine and cardiac imaging: Harnessing big data and advanced computing to provide personalized medical diagnosis and treatment. Current Cardiology Reports, 16(1), 444. Search in Google Scholar

[5] Larrobino, M. (2017, March 21). 3 ways big data affects biomedical research. Copyright Clearance Centre. http://www.copyright.com/blog/3-ways-data-affects-biomedical-research/ Search in Google Scholar

[6] Gates, B. (2017, December 14). Bill Gates: We must share data to fight Alzheimer’s. Financial Times. Search in Google Scholar

[7] Ballantyne, A., & Schaefer, O. (2018). Consent and the ethical duty to participate in health data research. Journal of Medical Ethics. Search in Google Scholar

[8] Currie, J. (2013). “Big data” versus “Big brother”: On the appropriate use of large-scale data collections in pediatrics. Pediatrics, 131(2), 127–132. Search in Google Scholar

[9] Ohm, P. (2010). Broken promises of privacy: Responding to the surprising failure of anonymization. UCLA Law Review, 57, 1707–1776. Search in Google Scholar

[10] Irura, M. (2019). Health. In T. Davies, S. Walker, M. Rubinstein, & F. Perini (Eds.), The state of open data: Histories and horizons (p. 175). African Minds and the International Development Research Center. Search in Google Scholar

[11] Xiaying, M. (2020). The legal significance of conceptual differentiation between information and data. Comparative Law Research, 6. Search in Google Scholar

[12] Knoppers, B. M. (2014). Framework for responsible sharing of genomic and health-related data. HUGO Journal, 8(3), 4. Search in Google Scholar

[13] Shabani, M., Knoppers, B. M., & Borry, P. (2015). From the principles of genomic data sharing to the practices of data access committee. EMBO Molecular Medicine, 7, 508. Search in Google Scholar

[14] Evans, B. J., & Jarvik, G. P. (2018). Impact of HIPAA’s minimum necessary standard on genomic data sharing. Genetics in Medicine, 20, 532. Search in Google Scholar

[15] Boyd, J. H., et al. (2012). Data linkage infrastructure for cross-jurisdictional health-related research in Australia. BMC Health Services Research, 12, 488. Search in Google Scholar

[16] Yue, S. (2024). Brief analysis of Washington State’s revised data leakage notification act. https://www.secrss.com/articles/10812 Search in Google Scholar

[17] Thorogood, A. (2018). Canada: Will privacy rules continue to favour open science? Human Genetics, 137, 597. Search in Google Scholar

[18] OECD. (2015). Health data governance: Privacy, monitoring and research (pp. 86–90). Search in Google Scholar

[19] Eckstein, L., et al. (2018). Australia: Regulating genomic data sharing to promote public trust. Human Genetics, 137, 585. Search in Google Scholar

[20] Deloitte. (2021). The Asia Pacific privacy guide 2020-2021 (p. 8). Search in Google Scholar

[21] Glinos, K. (2018). Global data meet EU rules. Science, 467. Search in Google Scholar

[22] Hogan, D. B., et al. (2013). Ethical and legal considerations for Canadian registries. Canadian Journal of Neurological Sciences, 40, 5–22. Search in Google Scholar

[23] Ohm, P. (2010). Broken promises of privacy: Responding to the surprising failure of anonymization. UCLA Law Review, 57, 1762. Search in Google Scholar

[24] Lippert, C., et al. (2017). Identification of individuals by trail prediction using whole-genome sequencing data. Proceedings of the National Academy of Sciences, 114, 10166–10171. Search in Google Scholar

[25] EI Emam, K., et al. (2011). A systematic review of re-identification attacks on health data. PLOS ONE, 6, e28071, 6–7. Search in Google Scholar

[26] Homer, N., et al. (2008). Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays. PLOS Genetics, 4, e1000167, 7–9. Search in Google Scholar

[27] Yingcheng, Q. (2021). Review and alternative choice of personal information anonymization rules in China. Global Legal Review, (3). Search in Google Scholar

[28] O’Keefe, C., et al. (2017). De-identification decision-making framework (p. iii). Search in Google Scholar

[29] Magnusson, R. S. (2002). Data linkage, health research and privacy: Regulating data flows in Australia’s health information system. Sydney Law Review, 24, 27. Search in Google Scholar

[30] D’Arcy, C., Holman, J., et al. (2008). A decade of data linkage in Western Australia: Strategic design, applications and benefits of the WA data linkage system. Australian Health Review, 32, 768. Search in Google Scholar

[31] Scheibner, J., et al. (2020). Data protection and ethics requirements for multisite research with health data: A comparative examination of legislative governance frameworks and the role of data protection technologies. Journal of Law and the Biosciences, 28. Search in Google Scholar

[32] Spindler, G., & Schmechel, P. (2016). Personal data and encryption in the European General Data Protection Regulation. Journal of Intellectual Property, Information Technology and Electronic Commerce Law, 7(3), 166. Search in Google Scholar

[33] Priisalu, J., & Ottis, R. (2017). Personal control of privacy and data: Estonian experience. Health Technology, 7, 449. Search in Google Scholar

[34] Mascalzoni, D., et al. (2015). International charter of principles for sharing bio-specimens and data. European Journal of Human Genetics, 23, 721. Search in Google Scholar

[35] Leven Dowski, A. (2018). How copyright law can fix artificial intelligence’s implicit bias problem. Washington Law Review, 93, 608. Search in Google Scholar