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001 978-3-030-04363-6
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020 _a9783030043636
_9978-3-030-04363-6
024 7 _a10.1007/978-3-030-04363-6
_2doi
050 4 _aRA1-418.5
072 7 _aMBP
_2bicssc
072 7 _aMED036000
_2bisacsh
072 7 _aMBP
_2thema
072 7 _aJPH
_2thema
082 0 4 _a362.1
_223
245 1 4 _aThe Ethics of Medical Data Donation
_h[electronic resource] /
_cedited by Jenny Krutzinna, Luciano Floridi.
250 _a1st ed. 2019.
264 1 _aCham :
_bSpringer International Publishing :
_bImprint: Springer,
_c2019.
300 _aX, 198 p. 1 illus.
_bonline resource.
336 _atext
_btxt
_2rdacontent
337 _acomputer
_bc
_2rdamedia
338 _aonline resource
_bcr
_2rdacarrier
347 _atext file
_bPDF
_2rda
490 1 _aPhilosophical Studies Series,
_x0921-8599 ;
_v137
505 0 _aChapter 1. Introduction (Jenny Krutzinna and Luciano Floridi) -- Part I: Conceptualising the Ethics of Medical Data Donation -- Chapter 2. Data Donation: How to Resist the iLeviathan (Barbara Prainsack) -- Chapter 3. Data Donations as Exercises of Sovereignty (Patrik Hummel, Matthias Braun and Peter Dabrock) -- Chapter 4. The Ethics of Uncertainty for Data Subjects (Philip J. Nickel) -- Chapter 5. Incongruities and Dilemmas in Data Donation: Juggling our 1s and 0s (Kerina H. Jones) -- Part II: Governance and Regulation of Medical Data Donation -- Chapter 6. Posthumous Medical Data Donation: The Case for a Regulatory Framework (Edina Harbinja) -- Chapter 7. Medical Data Donation, Consent and the Public Interest after Death: A Gateway to Posthumous Data Use (Annie Sorbie) -- Part III: Implementing Ethical Medical Data Donation -- Chapter 8. The Personal Data is Political (Bastian Greshake Tzovaras and Athina Tzovara) -- Chapter 9. Personal Data Cooperatives - A New Data Governance Framework for Data Donations and Precision Health (Ernst Hafen) -- Chapter 10. Defining Data Donation After Death: Metadata, Families, Directives, Guardians and the Road to Big Consent (David M. Shaw) -- Part IV: An Ethical Code for Posthumous Medical Data Donation -- Chapter 11. Enabling Posthumous Medical Data Donation: A Plea for the Ethical Utilisation of Personal Health Data (Jenny Krutzinna, Mariarosaria Taddeo and Luciano Floridi) -- Chapter 12. An Ethical Code for Posthumous Medical Data Donation (Jenny Krutzinna, Mariarosaria Taddeo and Luciano Floridi). .
506 0 _aOpen Access
520 _aThis open access book presents an ethical approach to utilizing personal medical data. It features essays that combine academic argument with practical application of ethical principles. The contributors are experts in ethics and law. They address the challenges in the re-use of medical data of the deceased on a voluntary basis. This pioneering study looks at the many factors involved when individuals and organizations wish to share information for research, policy-making, and humanitarian purposes. Today, it is easy to donate blood or even organs, but it is virtually impossible to donate one's own medical data. This is seen as ethically unacceptable. Yet, data donation can greatly benefit the welfare of our societies. This collection provides timely interdisciplinary research on biomedical big data. Topics include the ethics of data donation, the legal and regulatory challenges, and the current and future collaborations. Readers will learn about the ethical and regulatory challenges associated with medical data donations. They will also better understand the special nature of using deceased data for research purposes with regard to ethical principles of autonomy, beneficence, and justice. In addition, the contributors identify the key governance issues of such a scheme. The essays also look at what we can learn in terms of best practice from existing medical data schemes.
650 0 _aMedical policy.
650 0 _aSocial policy.
650 0 _aPhilosophy.
650 1 4 _aHealth Policy.
_0https://scigraph.springernature.com/ontologies/product-market-codes/H27040
650 2 4 _aSocial Policy.
_0https://scigraph.springernature.com/ontologies/product-market-codes/W34020
650 2 4 _aPhilosophy of Technology.
_0https://scigraph.springernature.com/ontologies/product-market-codes/E34050
700 1 _aKrutzinna, Jenny.
_eeditor.
_4edt
_4http://id.loc.gov/vocabulary/relators/edt
700 1 _aFloridi, Luciano.
_eeditor.
_4edt
_4http://id.loc.gov/vocabulary/relators/edt
710 2 _aSpringerLink (Online service)
773 0 _tSpringer Nature eBook
776 0 8 _iPrinted edition:
_z9783030043629
776 0 8 _iPrinted edition:
_z9783030043643
830 0 _aPhilosophical Studies Series,
_x0921-8599 ;
_v137
856 4 0 _uhttps://doi.org/10.1007/978-3-030-04363-6
912 _aZDB-2-SME
912 _aZDB-2-SXM
912 _aZDB-2-SOB
999 _c82826
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