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Defining Data Donation After Death: Metadata, Families, Directives, Guardians and the Route to Big Consent
Book Item (Buchkapitel, Lexikonartikel, jur. Kommentierung, Beiträge in Sammelbänden)
 
ID 4524542
Author(s) Shaw, David
Author(s) at UniBasel Shaw, David
Year 2019
Title Defining Data Donation After Death: Metadata, Families, Directives, Guardians and the Route to Big Consent
Editor(s) Krutzinna, Jenny; Floridi, Luciano
Book title The Ethics of Medical Data Donation
Publisher Springer International Publishing
Place of publication Cham
Pages 151-159
ISSN/ISBN 978-3-030-04362-9
Series title Philosophical Studies Series
Number 137
Keywords Data donation after death, Ethics, Big consent, Posthumous data donation, Advance directives, Data guardians
Abstract This chapter explores what we actually mean by data donation after death, and what different types of data donation metadata are involved in the process. It then provides an analysis of the ethical ramifications of each of these different types of data, outlines the concepts of data advance directives and data donation guardians as one way of dealing with these issues, and considers alternative governance mechanisms. The degree of control given to the first data donors may need to be high in order to maintain trust, but over time attitudes may evolve towards everyone giving "big consent" to data donation.
URL https://philpapers.org/rec/SHADDD
edoc-URL https://edoc.unibas.ch/74101/
Full Text on edoc No
Digital Object Identifier DOI 10.1007/978-3-030-04363-6_10
ISI-number WOS:000486481000011
 
   

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