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The law and ethics of data sharing in health sciences

紀錄類型:	書目-電子資源 : Monograph/item
正題名/作者:	The law and ethics of data sharing in health sciencesedited by Marcelo Corrales Compagnucci ... [et al.].
其他作者:	Corrales Compagnucci, Marcelo.
出版者:	Singapore :Springer Nature Singapore :2024.
面頁冊數:	xiii, 200 p. :ill., digital ;24 cm.
Contained By:	Springer Nature eBook
標題:	Electronic data processingLaw and legislation.
電子資源:	https://doi.org/10.1007/978-981-99-6540-3
ISBN:	9789819965403$q(electronic bk.)

The law and ethics of data sharing in health sciences
The law and ethics of data sharing in health sciences[electronic resource] /edited by Marcelo Corrales Compagnucci ... [et al.]. - Singapore :Springer Nature Singapore :2024. - xiii, 200 p. :ill., digital ;24 cm. - Perspectives in law, business and innovation,2520-1883. - Perspectives in law, business and innovation..

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.

ISBN: 9789819965403$q(electronic bk.)

Standard No.: 10.1007/978-981-99-6540-3doiSubjects--Topical Terms:

972402
Electronic data processing
--Law and legislation.

LC Class. No.: QA76.16

Dewey Class. No.: 004

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520 $a 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.
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