The ethical and legal challenges of data altruism for the scientific research sector

Scientific research nowadays is increasingly data-driven and therefore a growing amount of data need to be accessible and of high quality. The data altruism mechanism, as regulated in the Data Governance Act (DGA), aims to meet this demand. This paper investigates how data altruism mechanisms apply to the scientific research sector. This mechanism, based on the voluntary release of data, raises several normative challenges. From a legal viewpoint, data altruism in the research sector entails (1) the risk of fragmentation; (2) security concerns; and (3) the duty of control on data altruism organisations. From an ethical perspective, is the challenges regard (1) the very idea of altruism between ethics and infra-ethics; (2) the interplay between public interest, general interest, and common good; and (3) a concern related to the autonomy of both data subjects and data holders. Given the set of challenges, both legal and ethical, and the multiplicity of actors involved in the data altruism mechanism, the intent of the analysis is to provide an assessment on how the data altruism mechanism should be implemented at national level.