The Law and Ethics of Data Sharing in Health Sciences

Data sharing in the health sciences has gained importance due to increased collaboration, but it faces challenges such as compliance with complex regulations and government initiatives encouraging open data. This edited volume explores the legal complexities of data sharing through comparative case studies from diverse disciplines and jurisdictions, aiming to outline the normative, policy, and ethical dilemmas surrounding data sharing in the health sciences today.

Format: Hardback
Length: 200 pages
Publication date: 03 January 2024
Publisher: Springer Verlag, Singapore

Data sharing, encompassing the exchange of health-related data among multiple controllers and processors, has gained significant importance in the health sciences in recent years due to the increasing need and demand for collaboration. This includes data obtained through healthcare provisions, clinical trials, observational studies, public health surveillance programs, and other data collection methods. However, data sharing presents several notable challenges. Compliance with a complex and dynamic regulatory framework is essential, with the General Data Protection Regulation (GDPR) 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, Chapter Supplementary Measures and Appropriate Safeguards for International Transfers of Health Data after Schrems II are available open access under a Creative Commons Attribution 4.0 International License via link.springer.com.

Dimension: 235 x 155 (mm)
ISBN-13: 9789819965397
Edition number: 1st ed. 2024