05050nam a22006375i 4500 978-981-99-6540-3 DE-He213 20251030110908.0 cr nn 008mamaa 240102s2024 si | s |||| 0|eng d 9789819965403 978-981-99-6540-3 10.1007/978-981-99-6540-3 doi K3601-3611 LNTM bicssc LAW093000 bisacsh LNTM thema The Law and Ethics of Data Sharing in Health Sciences [electronic resource] / edited by Marcelo Corrales Compagnucci, Timo Minssen, Mark Fenwick, Mateo Aboy, Kathleen Liddell. 1st ed. 2024. Singapore : Springer Nature Singapore : Imprint: Springer, 2024. XIII, 200 p. 20 illus., 12 illus. in color. online resource. text txt rdacontent computer c rdamedia online resource cr rdacarrier text file PDF rda Perspectives in Law, Business and Innovation, 2520-1883 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. 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. Medical laws and legislation. 67566 Bioethics. 68916 Information technology Law and legislation. 67243 Mass media Law and legislation. 67244 Civil rights. 58419 European communities. 68209 Medical Law. 67568 Bioethics. 68916 IT Law, Media Law, Intellectual Property. 67246 European Fundamental Rights and Freedoms. 68210 Corrales Compagnucci, Marcelo. editor. (orcid)0000-0001-5709-3621 https://orcid.org/0000-0001-5709-3621 edt http://id.loc.gov/vocabulary/relators/edt 68917 Minssen, Timo. editor. edt http://id.loc.gov/vocabulary/relators/edt 68918 Fenwick, Mark. editor. edt http://id.loc.gov/vocabulary/relators/edt 68919 Aboy, Mateo. editor. (orcid)0000-0002-5168-4321 https://orcid.org/0000-0002-5168-4321 edt http://id.loc.gov/vocabulary/relators/edt 68920 Liddell, Kathleen. editor. edt http://id.loc.gov/vocabulary/relators/edt 68921 SpringerLink (Online service) Springer Nature eBook Printed edition: 9789819965397 Printed edition: 9789819965410 Printed edition: 9789819965427 Perspectives in Law, Business and Innovation, 2520-1883 68922 https://doi.org/10.1007/978-981-99-6540-3 ZDB-2-LCR ZDB-2-SXLC 57008 57008