Metodo

International Studies in Phenomenology and Philosophy

Journal | Volume | Article

216623

Democratizing health research through data cooperatives

Alessandro BlasimmeEffy VayenaErnst Hafen

pp. 473-479

Abstract

Massive amounts of data are collected and stored on a routine basis in virtually all domains of human activities. Such data are potentially useful to biomedicine. Yet, access to data for research purposes is hindered by the fact that different kinds of individual-patient data reside in disparate, unlinked silos. We propose that data cooperatives can promote much needed data aggregation and consequently accelerate research and its clinical translation. Data cooperatives enable direct control over personal data, as well as more democratic governance of data pools. This model can realize a specific kind of data economy whereby citizens and communities are empowered to steer data use according to their motivations, preferences, and concerns. Policy makers can promote this model by recognizing citizens' rights to access and to obtain a copy of their own data, and by funding distributed data infrastructures piloting new data aggregation models.

Publication details

Published in:

Taddeo Mariarosaria (2018) Landscaping cyber deterrence. Philosophy & Technology 31 (3).

Pages: 473-479

DOI: 10.1007/s13347-018-0320-8

Full citation:

Blasimme Alessandro, Vayena Effy, Hafen Ernst (2018) „Democratizing health research through data cooperatives“. Philosophy & Technology 31 (3), 473–479.