Exploring Data Altruism as Data Donation: A Review of Concepts, Actors and Objectives

Abstract

This paper reviews data altruism in the emerging academic literature by collecting and analyzing conceptually similar terms, identifying key actors, and delineating the objectives of general interest underlying this novel form of voluntary data sharing. Drawing from a wide array of disciplines including computer science, social science, law, and medicine and bioethics, we discover frequent comparisons with the notions of data donation, data crowdsourcing, data philanthropy, and data solidarity. In our observations of current definitions and understandings of data altruism and these related terms, we draw attention to analyzing their salient similarities and differences. Our analysis of actors and roles illustrates a wide variety of players envisioned to participate in data altruism. Our examination of different types of data discussed in the literature suggests the data altruism value chain proposition is largely promissory, with limited empirical evidence supporting specified objectives of general interest. This review contributes to a refined understanding of data altruism as a formal ‘data donation’ institutionalization process in the European digital space and highlights its implications for future research.