TY - BOOK AU - Corrales Compagnucci,Marcelo AU - Minssen,Timo AU - Fenwick,Mark AU - Aboy,Mateo AU - Liddell,Kathleen ED - SpringerLink (Online service) TI - The Law and Ethics of Data Sharing in Health Sciences T2 - Perspectives in Law, Business and Innovation, SN - 9789819965403 AV - K3601-3611 PY - 2024/// CY - Singapore PB - Springer Nature Singapore, Imprint: Springer KW - Medical laws and legislation KW - Bioethics KW - Information technology KW - Law and legislation KW - Mass media KW - Civil rights KW - European communities KW - Medical Law KW - IT Law, Media Law, Intellectual Property KW - European Fundamental Rights and Freedoms N1 - Introduction: The Dynamic Context & Multiple Challenges of Data Sharing Today -- The GA4GH Regulatory and Ethics Work Stream (REWS) at 10: An Interdisciplinary, Participative Approach to International Policy Development in Genomics -- Assessing Public and Private Rights of Action to Police Health Data Sharing -- Patient Perspectives on Data Sharing N2 - Data sharing – broadly defined as the exchange of health-related data among multiple controllers and processors – has gained increased relevance in the health sciences over recent years as the need and demand for collaboration has increased. This includes data obtained through healthcare provisions, clinical trials, observational studies, public health surveillance programs, and other data collection methods. The practice of data sharing presents several notable challenges, however. Compliance with a complex and dynamic regulatory framework is essential, with the General Data Protection Regulation being a prominent example in a European context. Recent regulatory developments related to clinical trial transparency, trade secrecy, data access, AI training data, and health data spaces further contribute to the difficulties. Simultaneously, government initiatives often encourage scientists to embrace principles of “open data” and “open innovation.” The variety of regulations in this domain has the potential to impede widespread data sharing and hinder innovation. This edited volume, therefore, compiles comparative case studies authored by leading scholars from diverse disciplines and jurisdictions. The book aims to outline the legal complexities of data sharing. By examining real-world scenarios from diverse disciplines and a global perspective, it explores the normative, policy, and ethical dilemmas that surround data sharing in the health sciences today. Chapter Patient Perspectives on Data Sharing is available open access under a Creative Commons Attribution 4.0 International License via link.springer.com. Chapter Supplementary Measures and Appropriate Safeguards for International Transfers of Health Data after Schrems II is available open access under a Creative Commons Attribution 4.0 International License via link.springer.com UR - https://doi.org/10.1007/978-981-99-6540-3 ER -