Hummel P, Braun M, Dabrock P (2019)
Publication Type: Book chapter / Article in edited volumes
Publication year: 2019
Publisher: Springer
Edited Volumes: The Ethics of Medical Data Donation
Series: Philosophical Studies Series
City/Town: Cham
Book Volume: 137
Pages Range: 23-54
DOI: 10.1007/978-3-030-04363-6_3
Open Access Link: https://link.springer.com/content/pdf/10.1007/978-3-030-04363-6.pdf
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.
APA:
Hummel, P., Braun, M., & Dabrock, P. (2019). Data Donations As Exercises Of Sovereignty. In Jenny Krutzinna, Luciano Floridi (Eds.), The Ethics of Medical Data Donation. (pp. 23-54). Cham: Springer.
MLA:
Hummel, Patrik, Matthias Braun, and Peter Dabrock. "Data Donations As Exercises Of Sovereignty." The Ethics of Medical Data Donation. Ed. Jenny Krutzinna, Luciano Floridi, Cham: Springer, 2019. 23-54.
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