Data Donations As Exercises Of Sovereignty

Patrik Hummel, Matthias Braun, Peter Dabrock

Onderzoeksoutput: Hoofdstuk in Boek/Rapport/CongresprocedureHoofdstukAcademicpeer review

21 Citaten (Scopus)

Samenvatting

We propose that the notion of individual sovereignty encompasses more than having the power to exclude others from one’s personal space. Instead, sovereignty is realized at least in part along outward-reaching, interactive and participatory dimensions. On the basis of reflections from gift theory, we argue that donations can generate social bonds, convey recognition and open up new options in social space. By virtue of these features, donations offer the potential to advance individual sovereignty. We go on to highlight distinctive benefits of data donations, before articulating several difficulties and puzzles: data donors are bound to have a limited grip on future uses of their data and the people affected by their decision to share. Further characteristic traits of data donations come from the invasive and comprehensive character of state-of-the-art data gathering and processing tools, and the fact that the relevant sense of data ownership is far from straightforward. In order to minimize tensions with negative, protective aspects of sovereignty, we argue that thoughtful mechanisms at the level of consent procedures, the representation of data subjects in governance structures, and organizational-level constraints are necessary. Along the way, we will devote particular attention to challenges and opportunities within big data contexts.
Originele taal-2Engels
TitelThe Ethics of Medical Data Donation
RedacteurenJenny Krutzinna, Luciano Floridi
Plaats van productieCham
UitgeverijSpringer
Hoofdstuk3
Pagina's23-54
Aantal pagina's32
ISBN van elektronische versie978-3-030-04363-6
ISBN van geprinte versie978-3-030-04362-9
DOI's
StatusGepubliceerd - 16 jan. 2019
Extern gepubliceerdJa

Publicatie series

NaamPhilosophical Studies Series (PSSP)
UitgeverijSpringer
Volume137
ISSN van geprinte versie0921-8599
ISSN van elektronische versie2542-8349

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