The Ethics of Medical Data Donation (Record no. 82826)
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| fixed length control field | 05104nam a22005655i 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 | 20200809191636.0 |
| 007 - PHYSICAL DESCRIPTION FIXED FIELD--GENERAL INFORMATION | |
| fixed length control field | cr nn 008mamaa |
| 008 - FIXED-LENGTH DATA ELEMENTS--GENERAL INFORMATION | |
| fixed length control field | 190116s2019 gw | s |||| 0|eng d |
| 020 ## - INTERNATIONAL STANDARD BOOK NUMBER | |
| International Standard Book Number | 9783030043636 |
| -- | 978-3-030-04363-6 |
| 024 7# - OTHER STANDARD IDENTIFIER | |
| Standard number or code | 10.1007/978-3-030-04363-6 |
| Source of number or code | doi |
| 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. |
| 250 ## - EDITION STATEMENT | |
| Edition statement | 1st ed. 2019. |
| 264 #1 - PRODUCTION, PUBLICATION, DISTRIBUTION, MANUFACTURE, AND COPYRIGHT NOTICE | |
| Place of production, publication, distribution, manufacture | Cham : |
| Name of producer, publisher, distributor, manufacturer | Springer International Publishing : |
| -- | Imprint: Springer, |
| Date of production, publication, distribution, manufacture, or copyright notice | 2019. |
| 300 ## - PHYSICAL DESCRIPTION | |
| Extent | X, 198 p. 1 illus. |
| Other physical details | online resource. |
| 336 ## - CONTENT TYPE | |
| Content type term | text |
| Content type code | txt |
| Source | rdacontent |
| 337 ## - MEDIA TYPE | |
| Media type term | computer |
| Media type code | c |
| Source | rdamedia |
| 338 ## - CARRIER TYPE | |
| Carrier type term | online resource |
| Carrier type code | cr |
| Source | rdacarrier |
| 347 ## - DIGITAL FILE CHARACTERISTICS | |
| File type | text file |
| Encoding format | |
| Source | rda |
| 490 1# - SERIES STATEMENT | |
| Series statement | Philosophical Studies Series, |
| International Standard Serial Number | 0921-8599 ; |
| Volume/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 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. |
| 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. |
| 650 14 - SUBJECT ADDED ENTRY--TOPICAL TERM | |
| Topical term or geographic name as entry element | Health Policy. |
| Authority record control number | https://scigraph.springernature.com/ontologies/product-market-codes/H27040 |
| 650 24 - SUBJECT ADDED ENTRY--TOPICAL TERM | |
| Topical term or geographic name as entry element | Social Policy. |
| Authority record control number | https://scigraph.springernature.com/ontologies/product-market-codes/W34020 |
| 650 24 - SUBJECT ADDED ENTRY--TOPICAL TERM | |
| Topical term or geographic name as entry element | Philosophy of Technology. |
| Authority record control number | https://scigraph.springernature.com/ontologies/product-market-codes/E34050 |
| 700 1# - ADDED ENTRY--PERSONAL NAME | |
| Personal name | Krutzinna, Jenny. |
| Relator term | editor. |
| Relator code | edt |
| -- | http://id.loc.gov/vocabulary/relators/edt |
| 700 1# - ADDED ENTRY--PERSONAL NAME | |
| Personal name | Floridi, Luciano. |
| Relator term | editor. |
| Relator code | edt |
| -- | http://id.loc.gov/vocabulary/relators/edt |
| 710 2# - ADDED ENTRY--CORPORATE NAME | |
| Corporate name or jurisdiction name as entry element | SpringerLink (Online service) |
| 773 0# - HOST ITEM ENTRY | |
| Title | Springer Nature eBook |
| 776 08 - ADDITIONAL PHYSICAL FORM ENTRY | |
| Relationship information | Printed edition: |
| International Standard Book Number | 9783030043629 |
| 776 08 - ADDITIONAL PHYSICAL FORM ENTRY | |
| Relationship information | Printed edition: |
| International Standard Book Number | 9783030043643 |
| 830 #0 - SERIES ADDED ENTRY--UNIFORM TITLE | |
| Uniform title | Philosophical Studies Series, |
| International Standard Serial Number | 0921-8599 ; |
| Volume number/sequential designation | 137 |
| 856 40 - ELECTRONIC LOCATION AND ACCESS | |
| Uniform Resource Identifier | <a href="https://doi.org/10.1007/978-3-030-04363-6">https://doi.org/10.1007/978-3-030-04363-6</a> |
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