Defining Data Donation After Death: Metadata, Families, Directives, Guardians and the Route to Big Consent

David M. Shaw

doi:10.1007/978-3-030-04363-6_10

Defining Data Donation After Death: Metadata, Families, Directives, Guardians and the Route to Big Consent

Review

In: The Ethics of Medical Data Donation [Internet]. Cham (CH): Springer; 2019. Chapter 10.

2019 Jan 16.

Author

David M. Shaw^{1

2}

Book Editors

Jenny Krutzinna¹, Luciano Floridi²

Affiliations

¹ Institute for Biomedical Ethics, University of Basel, Basel, Switzerland
² Care and Public Health Research Institute, Maastricht University, Maastricht, The Netherlands

Book Affiliations

¹ Department of Administration and Organization Theory, University of Bergen, Bergen, Norway
² Oxford Internet Institute, University of Oxford, Oxford, UK, The Alan Turing Institute, London, UK

Excerpt

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.

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