Confidentiality, Privacy, and Data Protection in Biomedicine

Featuring contributions from leading scholars of health privacy law, this important volume offers insightful reflection on issues such as confidentiality, privacy, and data protection, as well as analysis in how a range of jurisdictions-including the US, the UK, Europe, South Africa, and Australia-navigate a rapidly developing biomedical environment. While the collection of personal health information offers the potential to drive research and innovation, it also generates complex legal and ethical questions in how this information is used to ensure the rights and interests of individuals and communities are respected. But in many ways laws have struggled to keep pace with technological developments. This book therefore seeks to fill a lacuna for legal insight and reflection. Over three parts, the book first explores the conceptual landscape which law and legal institutions must contend, and then turns to examine practical issues such as the GDPR, secondary use of data for research, genomic research, and data trusts. With cutting-edge analysis drawing on domestic and international case law, legislation, and policy, this comprehensive volume will prove fascinating reading for all students and researchers interested in this evolving and contentious area of study.

Edward S. Dove is a Professor of Law at the School of Law and Criminology, Maynooth University, Ireland.

Introduction 1. Is privacy egregiously wrong? Reflections on a concept that can make or break constitutions 2. Public interest and trustworthiness: connecting the concepts through reasonable justification for (non)interference with medical confidentiality 3. Big Data research: can confidentiality and fiduciary duties fill in the gaps in privacy and data protection? 4. Managing access to health data for research and innovation in the EU: is a better regulatory approach possible? 5. Secondary Uses of Patients' Data in the European Health Data Space: A UK-German Comparison 6. The evolution of privacy governance in healthcare in post-apartheid South Africa 7. Is health privacy worth the cost? 8. Misuse of private information and the common law right of privacy: a new frontier in biomedicine? 9. Hackers and hacked: how does the law respond to and remedy health data breaches in the Asia-Pacific? 10. Challenges and opportunities for data trusts for health research 11. Human organoids: things or data? 12. Balancing the right to data protection with managing the care of HIV patients: experiences from the National Institute for Communicable Diseases, South Africa