The Ethics of Medical Data Donation (Record no. 44280)

MARC details
000 -LEADER
fixed length control field 04351nam a22004335i 4500
001 - CONTROL NUMBER
control field 978-3-030-04363-6
003 - CONTROL NUMBER IDENTIFIER
control field DE-He213
005 - DATE AND TIME OF LATEST TRANSACTION
control field 20200602143145.0
007 - PHYSICAL DESCRIPTION FIXED FIELD--GENERAL INFORMATION
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020 ## - INTERNATIONAL STANDARD BOOK NUMBER
International Standard Book Number 9783030043636
024 7# - OTHER STANDARD IDENTIFIER
Standard number or code 10.1007/978-3-030-04363-6
Source of number or code doi
040 ## - CATALOGING SOURCE
Transcribing agency RSC
050 #4 - LIBRARY OF CONGRESS CALL NUMBER
Classification number RA1-418.5
072 #7 - SUBJECT CATEGORY CODE
Subject category code MBP
Source bicssc
072 #7 - SUBJECT CATEGORY CODE
Subject category code MED036000
Source bisacsh
072 #7 - SUBJECT CATEGORY CODE
Subject category code MBP
Source thema
072 #7 - SUBJECT CATEGORY CODE
Subject category code JPH
Source thema
082 04 - DEWEY DECIMAL CLASSIFICATION NUMBER
Classification number 362.1
Edition number 23
245 14 - TITLE STATEMENT
Title The Ethics of Medical Data Donation
Medium [electronic resource] /
Statement of responsibility, etc edited by Jenny Krutzinna, Luciano Floridi.
300 ## - PHYSICAL DESCRIPTION
Extent X, 198 p. 1 illus.
Other physical details online resource.
490 1# - SERIES STATEMENT
Series statement Philosophical Studies Series,
International Standard Serial Number 0921-8599 ;
Volume number/sequential designation 137.
505 0# - FORMATTED CONTENTS NOTE
Formatted contents note Chapter 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 ## - RESTRICTIONS ON ACCESS NOTE
Terms governing access Access restricted to subscribing institutions.
506 0# - RESTRICTIONS ON ACCESS NOTE
Terms governing access Open Access.
520 ## - SUMMARY, ETC.
Summary, etc This 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.
538 ## - SYSTEM DETAILS NOTE
System details note Mode of access: World Wide Web.
650 #0 - SUBJECT ADDED ENTRY--TOPICAL TERM
Topical term or geographic name as entry element Medical policy.
650 #0 - SUBJECT ADDED ENTRY--TOPICAL TERM
Topical term or geographic name as entry element Social policy.
650 #0 - SUBJECT ADDED ENTRY--TOPICAL TERM
Topical term or geographic name as entry element Philosophy.
700 1# - ADDED ENTRY--PERSONAL NAME
Personal name Krutzinna, Jenny.
Relator term editor.
700 1# - ADDED ENTRY--PERSONAL NAME
Personal name Floridi, Luciano.
Relator term editor.
710 2# - ADDED ENTRY--CORPORATE NAME
Corporate name or jurisdiction name as entry element SpringerLink (Online service)
773 0# - HOST ITEM ENTRY
Title Springer eBooks.
830 #0 - SERIES ADDED ENTRY--UNIFORM TITLE
Uniform title Philosophical Studies Series,
Volume number/sequential designation 137.
856 40 - ELECTRONIC LOCATION AND ACCESS
Uniform Resource Identifier <a href="http://ezproxy.lib.gla.ac.uk/login?url=https://doi.org/10.1007/978-3-030-04363-6">http://ezproxy.lib.gla.ac.uk/login?url=https://doi.org/10.1007/978-3-030-04363-6</a>
Public note Connect to e-book
907 ## - LOCAL DATA ELEMENT G, LDG (RLIN)
a .b33325376
942 ## - ADDED ENTRY ELEMENTS (KOHA)
Source of classification or shelving scheme Dewey Decimal Classification
Koha item type E-Book
Holdings
Withdrawn status Lost status Source of classification or shelving scheme Damaged status Not for loan Home library Current library Shelving location Date acquired Total Checkouts Full call number Date last seen Price effective from Koha item type
    Dewey Decimal Classification     Reformational Study Centre Reformational Study Centre General library 06/02/2020   362.1 06/02/2020 06/02/2020 E-Book