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.
