Data Donations as Exercises of Sovereignty

Abstract

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.

Eine neue Generation des Datenschutzes? Gegenwärtige Unvollständigkeit, mögliche Lösungswege und nächste Schritte

“…4 In diesem Zuge sind die Erwartungen bezüglich der Kontrolle über die in der Forschung verwendeten personenbezogenen Daten gestiegen. Gleichzeitig ist mit dem gestärkten Grad an Partizipation zumindest potenziell der Anspruch verbunden, Daten spenden zu können (Hummel et al 2019).…”

Just data? Solidarity and justice in data-driven medicine

“…We propose to understand the controllability of data flows as encompassing the availability of means to know which kind of person-related inferences can be drawn on the basis of one’s data in order to consider possible impacts on the individual modes of freedom. On this basis, controllability then further involves an entitlement to have means to protect, to share, but also to retract information (Hummel et al 2019 ). As one specific example, Wachter and Mittelstadt ( 2019 ) demand a right to reasonable inferences which motivates an entitlement of data subjects to ex-ante justification concerning the reasonableness of data-driven inferences to which they are subjected, e.g., the kind of data and their source, the purpose of data processing, and the statistical reliability about the inference.…”

N = many me’s: self-surveillance for Precision Public Health

“…This is why the term 'information sharing' can legitimately be used in the AoU program (U.S. Department of Health and Human Services n.d.). However, the characteristic of data that it is not consumed in the course of the process and that it can be used and reused indefinitely is reason for bio-ethicist Barbara Prainsack to argue that 'sharing' is rather unspecific and that 'data donation' is preferable (Hummel et al 2019;Mayer-Schonberger and Cukier 2013;Prainsack 2019). Calling it 'donation' would acknowledge the relational character and the opportunities that are given i.e.…”

“…to use and market them (Prainsack 2019). As Hummel et al argue, 'sharing' obfuscates the symbolic meaning of what a gift entails; gifts are means for individuals and groups to determine and shape identities, because we give something of ourselves to others (Hummel et al 2019). One could argue that this is precisely what participants in the AoU program are enabled to do: building a group identity via the 'gift' of their data.…”