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024 7 _a10.1007/978-981-99-6540-3
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072 7 _aLNTM
_2bicssc
072 7 _aLAW093000
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245 1 4 _aThe Law and Ethics of Data Sharing in Health Sciences
_h[electronic resource] /
_cedited by Marcelo Corrales Compagnucci, Timo Minssen, Mark Fenwick, Mateo Aboy, Kathleen Liddell.
250 _a1st ed. 2024.
264 1 _aSingapore :
_bSpringer Nature Singapore :
_bImprint: Springer,
_c2024.
300 _aXIII, 200 p. 20 illus., 12 illus. in color.
_bonline resource.
336 _atext
_btxt
_2rdacontent
337 _acomputer
_bc
_2rdamedia
338 _aonline resource
_bcr
_2rdacarrier
347 _atext file
_bPDF
_2rda
490 1 _aPerspectives in Law, Business and Innovation,
_x2520-1883
505 0 _aIntroduction: 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 _aData 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.
650 0 _aMedical laws and legislation.
_967566
650 0 _aBioethics.
_968916
650 0 _aInformation technology
_xLaw and legislation.
_967243
650 0 _aMass media
_xLaw and legislation.
_967244
650 0 _aCivil rights.
_958419
650 0 _aEuropean communities.
_968209
650 1 4 _aMedical Law.
_967568
650 2 4 _aBioethics.
_968916
650 2 4 _aIT Law, Media Law, Intellectual Property.
_967246
650 2 4 _aEuropean Fundamental Rights and Freedoms.
_968210
700 1 _aCorrales Compagnucci, Marcelo.
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700 1 _aMinssen, Timo.
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700 1 _aFenwick, Mark.
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700 1 _aAboy, Mateo.
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700 1 _aLiddell, Kathleen.
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710 2 _aSpringerLink (Online service)
773 0 _tSpringer Nature eBook
776 0 8 _iPrinted edition:
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776 0 8 _iPrinted edition:
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776 0 8 _iPrinted edition:
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830 0 _aPerspectives in Law, Business and Innovation,
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856 4 0 _uhttps://doi.org/10.1007/978-981-99-6540-3
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