Although European legislators have been largely inactive on the matter, collective protection for data subjects would be crucial in today's data-driven society. This is particularly true for consent, a legal basis that is widely used but not able to ensure the informational self-determination of individuals. Data cooperatives could therefore be a collective body to make up for this lack. The paper analyses the use case of health research, where the model could be largely diffused, especially in consideration of legislation that currently still focuses on consent. Furthermore, not even the very recent amendments to the Privacy Code and the future, desirable approval of the regulation on the European Health Data Space would make this role less important
Le cooperative di dati come forma di tutela collettiva degli interessati: un’opportunità per l’ambito sanitario? / Scagliarini, Simone; Palladini, Veronica. - (2024), pp. 407-433.
Le cooperative di dati come forma di tutela collettiva degli interessati: un’opportunità per l’ambito sanitario?
SCAGLIARINI, Simone;PALLADINI, Veronica
2024
Abstract
Although European legislators have been largely inactive on the matter, collective protection for data subjects would be crucial in today's data-driven society. This is particularly true for consent, a legal basis that is widely used but not able to ensure the informational self-determination of individuals. Data cooperatives could therefore be a collective body to make up for this lack. The paper analyses the use case of health research, where the model could be largely diffused, especially in consideration of legislation that currently still focuses on consent. Furthermore, not even the very recent amendments to the Privacy Code and the future, desirable approval of the regulation on the European Health Data Space would make this role less importantFile | Dimensione | Formato | |
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