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The law and ethics of data sharing in health sciences

Record Type:	Electronic resources : Monograph/item
Title/Author:	The law and ethics of data sharing in health sciences/ edited by Marcelo Corrales Compagnucci ... [et al.].
other author:	Corrales Compagnucci, Marcelo.
Published:	Singapore :Springer Nature Singapore : : 2024.,
Description:	xiii, 200 p. :ill., digital ;24 cm.
[NT 15003449]:	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.
Contained By:	Springer Nature eBook
Subject:	Electronic data processing - Law and legislation. -
Online resource:	https://doi.org/10.1007/978-981-99-6540-3
ISBN:	9789819965403

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

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

890639
Electronic data processing
--Law and legislation.

LC Class. No.: QA76.16

Dewey Class. No.: 004

The law and ethics of data sharing in health sciences
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490 1 $a Perspectives in law, business and innovation, $x 2520-1883
505 0 $a 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.
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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650 2 4 $a Bioethics. $3 558486
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650 2 4 $a European Fundamental Rights and Freedoms. $3 3414356
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