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The article addresses the future of European Union (EU) data privacy law and argues for a shift of paradigm, calling for a less technology-driven and more human-centric and societally focused approach. It discusses two case studies — poor people's data privacy and women's data privacy — and the recent System for Risk Indication "SyRI" and finds that the mainstream EU data protection narrative has missed out fundamental questions about the socio-economic, gender and intersectional exceptions of EU data protection law. In this regard, the article argues that EU data protection law should be reconstructed to pursue substantive equality goals. It proposes an egalitarian data privacy project guided by methods that bring forward neglected perspectives and narratives. It concludes that only if EU data protection law is attentive to the inequalities that the most vulnerable face, it can remain relevant in the future.

The book covers data privacy in depth with respect to data mining, test data management, synthetic data generation etc. It formalizes principles of data privacy that are essential for good anonymization design based on the data format and discipline. The principles outline best practices and reflect on the conflicting relationship between privacy and utility. From a practice standpoint, it provides practitioners and researchers with a definitive guide to approach anonymization of various data formats, including multidimensional, longitudinal, time-series, transaction, and graph data. In addition to helping CIOs protect confidential data, it also offers a guideline as to how this can be implemented for a wide range of data at the enterprise level.

Protecting Data Privacy in Health Services Research -- Copyright -- Preface -- Acknowledgments -- REVIEWERS -- Contents -- Executive Summary -- HEALTH SERVICES RESEARCH AND QUALITY ASSURANCE OR IMPROVEMENT -- PROTECTION OF HUMAN SUBJECTS -- GOOD PRACTICES -- PROJECT AND SCOPE -- RECOMMENDATIONS -- Best Practices for IRB Review of HSR Subject to Federal Regulations (Chapter 3) -- Best Practices for Review of HSR Not Necessarily Subject to Federal Regulation (Chapter 4) -- Recommendations for Next Steps (Chapter 5) -- 1 Introduction -- PRIVACY AND RESEARCH -- Privacy and Confidentiality -- Benefits and Risks of Harm in Research -- Federal Regulations -- HEALTH SERVICES RESEARCH -- BENEFITS OF HSR -- RISKS OF HARM FROM HSR -- BACKGROUND AND POLICY CONTEXT -- PROJECT AND SCOPE -- OUTLINE OF REPORT -- 2 Human Subjects Protection and Health Services Research in Federal Regulations -- IRBS AND HUMAN SUBJECTS PROTECTION -- Background of Federal Regulations -- IRB Review -- What Research Is Subject to Federal Regulations? -- What Establishes a Project as Research? -- What Establishes a Research Study as Involving Human Subjects? -- What HSR May Be Exempt from IRB Review? -- What HSR May Qualify for Expedited Review? -- May Informed Consent Be Waived? -- What Is Minimal Risk? -- PREVIOUS STUDIES OF IRBS -- HUMAN SUBJECTS PROTECTION IN HSR -- PRINCIPLES AND PRACTICES -- 3 Best Practices for IRB Review of Health Services Research Subject to Federal Regulations -- RECOMMENDATIONS -- 4 Best Practices for IRB or Other Review Board Oversight of Health Services Research Not Necessarily Subject to Federal... -- RECOMMENDATIONS -- 5 Recommendations for Next Steps -- RECOMMENDATIONS -- References -- Acronyms and Abbreviations -- APPENDIX A Study Activities -- WORKSHOP ON INSTITUTIONAL REVIEW BOARDS.

Data Privacy Day should serve as a good reminder to consumers to check that they are acting on their own privacy preferences, but also to policymakers of the tradeoffs involved with overly restrictive privacy laws.

Graham Greenleaf (University of New South Wales, Faculty of Law) has posted Global Data Privacy Laws 2023: International Standards Stall, but UK Disrupts ((2023) 183 Privacy Laws & Business International Report 8-15) on SSRN. Here is the abstract: Since 2020...

The COVID-19 pandemic has presented lessons on using health data to improve, save, and protect lives, and the need to improve the stewardship of health privacy. Before the pandemic, the United States already had a broken health data system, fragmented and dominated by public-private partnerships in which the businesses involved sought to commercialize patient data. More than two years into the pandemic, in many respects health data privacy is even more fractured and prone to being misused to profiteer and to harm rather than help the most vulnerable. Health data is now being used by law enforcement to criminalize abortion and undocumented immigration, making reform an urgent necessity.