Democratizing Health Research Through Data Cooperatives

Philosophy and Technology 31 (3):473-479 (2018)
  Copy   BIBTEX


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.



    Upload a copy of this work     Papers currently archived: 89,621

External links

Setup an account with your affiliations in order to access resources via your University's proxy server

Through your library

Similar books and articles

Bodies of Data: Genomic Data and Bioscience Data Sharing.Pilar Ossorio - 2011 - Social Research: An International Quarterly 78 (4):907-932.
Bodies of data: genomic data and bioscience data sharing.Pilar N. Ossorio - 2011 - Social Research: An International Quarterly 78 (3):907-932.
Data models and the acquisition and manipulation of data.Todd Harris - 2003 - Philosophy of Science 70 (5):1508-1517.
Genomic research data: open vs. restricted access.David B. Resnik - 2010 - IRB: Ethics & Human Research 32 (1):1.
Data return: The sense of the given in educational research.Paul Standish - 2001 - Journal of Philosophy of Education 35 (3):497–518.
Acquisition and use of clinical data for audit and research.Jeremy Wyatt Dm Mrcp - 1995 - Journal of Evaluation in Clinical Practice 1 (1):15-27.


Added to PP

12 (#919,242)

6 months
1 (#1,014,433)

Historical graph of downloads
How can I increase my downloads?

Author's Profile