Shaw, David. (2019) Defining Data Donation After Death: Metadata, Families, Directives, Guardians and the Route to Big Consent. In: The Ethics of Medical Data Donation. Cham, pp. 151-159.
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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.
Faculties and Departments: | 08 Cross-disciplinary Subjects > Ethik > Institut für Bio- und Medizinethik > Bio- und Medizinethik (Elger) 03 Faculty of Medicine > Departement Public Health > Ethik in der Medizin > Bio- und Medizinethik (Elger) |
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UniBasel Contributors: | Shaw, David |
Item Type: | Book Section, refereed |
Book Section Subtype: | Further Contribution in a Book |
Publisher: | Springer International Publishing |
ISBN: | 978-3-030-04362-9 |
Series Name: | Philosophical Studies Series |
Issue Number: | 137 |
Note: | Publication type according to Uni Basel Research Database: Book item |
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Identification Number: | |
Last Modified: | 14 Feb 2020 14:44 |
Deposited On: | 14 Feb 2020 14:44 |
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