Abstract
This chapter addresses a rapidly growing debate in data policy: the call for new intermediaries between data “givers” and “data takers” to mitigate and redistribute power asymmetries. Data intermediaries such as data trusts are thought to fulfil several functions: (a) to think and act about collective forms of data governance, (b) to protect vulnerable populations from abuse, (c) to provide tools to counter the powers of large platforms, (d) to unlock new markets for data usage. These possible functions, however, are not without tensions. This chapter starts by providing an overview of several proposals for data trusteeship. Then it introduces a substantive data trusteeship model from the biomedical sector that predates current data trusteeship. Further, new models such as personal information management systems (PIMS), data cooperatives and other forms of data stewardship are discussed. Finally, these are evaluated in terms of their opportunities, risks and challenges for data governance, as well as potential non-intended effects.
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Notes
- 1.
FAIR stands for Findable, Accessible, Interoperable and Reusable.
- 2.
In order to safeguard the right to informational self-determination, the data subject must be comprehensively informed about the content, objectives and risks of the contract as well as the rights of all parties involved before signing the informed consent to the trusteeship. In terms of data protection, every informed consent is based on the principle of voluntariness and purpose limitation and therefore includes the possibility of freely revoking the consent at any time.
- 3.
See for example: UK Biobank (n.d.).
- 4.
On the concept, see Langford et al. (2020), for a list of such existing prototypes in different countries, see at pp. 36–38. In 2022, 33 organisations from 15 countries were awarded MyData Operator status, 41 in total (MyData, 2022). A constructive-critical discussion of MyData is provided by Lehtiniemi (2020).
- 5.
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Schneider, I. (2024). Data Stewardship by Data Trusts: A Promising Model for the Governance of the Data Economy?. In: Padovani, C., Wavre, V., Hintz, A., Goggin, G., Iosifidis, P. (eds) Global Communication Governance at the Crossroads. Global Transformations in Media and Communication Research - A Palgrave and IAMCR Series. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-031-29616-1_19
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