The widespread generation, collection and linking of data through digital technologies not only opens up potential for everyday life, but can also ensure opportunities for medical knowledge processing, for example. Nevertheless, this potential is also offset by the misuse of data or the power of large platforms, which pose challenges for the informational self-determination of consumers or for the state’s ability to act and compete. The discussion on data trustees can be located in the area of tension between the implementation of social opportunities for data use and the guarantee of data protection. Data trustees are often seen as bodies that are supposed to ensure a trustworthy and fair exchange of data between different stakeholders. [1]
Due to the numerous social fields in which data trustees are used (e.g. medicine, agriculture, automotive industry), different forms and objectives of data trustees can be distinguished. [2] In a heuristic sense, a distinction can be made between data trustees that primarily focus on guaranteeing individual data sovereignty or promoting data analyses for the common good. [3] Personal Information Management Systems (PIMS), which support consumers in enforcing their rights, are an example of the former. This can be ensured by consent management systems, for example, which are designed to enable control of the collection and use of data. [4] In addition, legal and technical support for data portability appears to be a starting point for data trustees in order to reduce dependence on large platforms and enable users to control information about their data. The MyData initiative, for example, pursues this objective: “The portability of personal data, that allows individuals to obtain and reuse their personal data for their own purposes and across different services, is the key to make the shift from data in closed silos to data which become reusable resources. Data portability should not be merely a legal right, but combined with practical means.” [5, p. 3]
Attempts to strengthen individual information control can in turn be distinguished from data trustee initiatives that aim to enable data analysis for the common good. An example of this is the open source platform openSAFELY, which aims to promote knowledge about disease progression based on the analysis of health data. The boundaries between the various objectives of data trustees can be blurred. It is conceivable, for example, that data trustees in the medical sector focus equally on supporting individual data sovereignty and enabling data analyses for the common good.
Comparability with analogue phenomena
In order to classify specific challenges and potentials for the application and design of data trustees, a comparison with data trustees in the analog field is useful. For example, professional actors in the legal or medical field can be seen as information trustees who, due to their professional ethical obligations, are naturally expected to handle information loyally and represent the interests of their clients. [6], [7, p. 344f.] These professions provide indispensable social services. At the same time, high information and power asymmetries characterize the relationship between professions and their clients, which results in a special need for protection for the latter. The great importance of the integration of digital services and data use practices for everyday life and knowledge processing in many areas of society also indicates a need for information trustees in the digital sector who, like traditional information trustees, guarantee effective representation of the interests of the groups of people affected by data processing. Against this backdrop, the image of data trustees as neutral bodies to mediate between different interests also falls short in the digital sector due to the power imbalances between data processing bodies and consumers. This is because “as useful as a neutral body that weighs up the respective interests and risks of the individual parties is, it does not replace the need for partisan bodies that assess the risks from the perspective of their clients and represent their interests.” [1, S. 21]
Social relevance
The comparison of data trustees in the digital sphere with professional information trustees in the medical or legal context illustrates that the social relevance of data trustees must be considered high overall. Just as the autonomy of clients of traditional social professions is only ensured by professional ethical structures, informational self-determination as a regulatory fiction in the digital world cannot simply be assumed, but requires professional anchoring by bodies that effectively represent the interests of consumers. Data trustees can certainly play a supporting role here. However, it must be critically questioned to what extent data trustees that focus on promoting individual data sovereignty and information control by supporting consent management or data portability, for example, could themselves have politically unpleasant side effects. Improved information for users or increased individual control of information does not necessarily contribute to the reduction of power asymmetries, but can further promote developments in the individualization of responsibility for data protection risks. [8] Collective data protection challenges in particular, such as the protection of group interests, which play a role in the context of data analysis in the medical sector, for example, require institutional structures that ensure that data analysis is sensitive to discrimination. In particular, it must be ensured that data trustees do not present their own interests as a collective common good orientation. [9] In order to enable effective representation of the interests of users and other stakeholders affected by data processing, it is also essential that “the data subjects […] are adequately involved in order to exercise a form of collective informational self-determination.” [1, p. 18] Just as in the field of traditional professions, the long-term development of professional skills and professional ethical standards among data trustees is therefore required, which is ensured by a collective self-organization and association structure. [10, p. 15]
Further links and literature
Further links and literature
Recommended reading:
- Öhman, C. J./Watson, D. (2019). Are the Dead Taking over Facebook? A Big Data Approach to the Future of Death Online. In: Big Data & Society 6(1), 1-13.
- Sisto, D. (2020). Online Afterlives. Immortality, Memory, and Grief in Digital Culture, Cambridge (Massachusetts).
Sources
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- My Data (2017). Declaration of Mydata Principles. https://raw.githubusercontent.com/mydataglobal/declaration/master/1.0/EN/MyData_Declaration_v1.0_EN.pdf [06.03.2024].
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- Uhlmann, M./Kropf, J./Lamla, J. (2022). Datenintermediäre als Fairness-Akteure in der Datenökonomie. Vortrag 15 der Reihe „Zu treuen Händen“. Verbraucherzentrale NRW e. V. https://www.verbraucherforschung.nrw/sites/default/files/2022-02/zth-15-uhlmann-kropf-lamla-datenintermediaere-als-fairness-akteure-in-der-datenoekonomie.pdf [06.03.2024].