Data Donation: How to Resist the iLeviathan

Review
In: The Ethics of Medical Data Donation [Internet]. Cham (CH): Springer; 2019. Chapter 2.
.

Excerpt

Large corporations are attracting criticism for their quasi-monopolist role in the digital data domain. It has been argued that they are no longer regular market participants but have become de facto market regulators against whom public and civil society actors are powerless even when faced with stark ethical misconduct. Companies such as Google, Amazon, Facebook, and Apple (GAFA) have become a new Leviathan: a monster for which people give up freedoms in exchange for other goods that they consider essential. Data donation is a strategy that could, if certain conditions are met, help tackle the overarching power of multinational enterprises. I will propose that data donation, understood as a specific type of transaction, has three distinctive characteristics: relationality, indirect reciprocity and multiplicity. I suggest ways in which ethical and regulatory frameworks for data donation should consider these characteristics to ensure that data donations respond to the institutional and power relationships that digital data use is embedded in, that data donations contribute to the public good, and that they and protect the personal needs and interests of people involved in it.

Publication types

  • Review