Voluntary data sharing is broken: Data donation for scientific research as site of digital repair

In the digital age, the pervasive presence of the internet has fundamentally altered the landscape of capitalism, knowledge and human communication. However, alongside its transformative potential, voluntary data sharing in the public interest, or data donation, is plagued by systemic issues, ranging from lack of trust and privacy breaches to legal uncertainty, undermining its intended role as a democratizing force.

Recognizing this brokenness, we turn to the concept of digital repair as a lens through which to understand and address these deficiencies. Drawing from social innovation and data governance theories, this abstract advances the sociology of repair centered on the concept of data altruism, the new EU framework for voluntary data sharing for objectives of general interest, including scientific research purposes. This talk explores the potential of data donation as a means to not only rectify the fractures in the digital data ecosystem, but also to stimulate a more socially sustainable data economy.

By conceptualizing data donation within the framework of sociology of repair, this talk proposes its implications for reframing data agency, and advancing notions of digital constitutionalism. This talk is explicitly an effort to facilitate discussion about useful and plausible conceptual tools to theorize data donation. Through an ethnographically-informed investigation, this talk contributes to an understanding of the infrastructure enabling data altruism for scientific research purposes in the Netherlands, offering insights that are fruitful for navigating future research journeys into the European data economy.