PRIVATE Gen

Privacy Regimes Investigated: Variations, Adaptations, and Transformations in an Era of (post-)Genomics

Project Coordinator:

Prof. Dr. theol. Peter Dabrock, M.A.
Philipps-University Marburg
Germany


Partners:

Prof. Dr. Jochen Taupitz
University of Mannheim
Germany

Prof. Herbert Gottweis
University of Vienna; Department of Political Science
Austria

Adjunct Prof. Ilpo Helén
University of Helsinki; Department of Sociology
Finland

Abstract:

Increasing amounts of bioinformation are collected, stored, and subsequently disseminated and used in collaborative life-science research environments. Exceptionally large amounts of potentially sensitive data that are collected and stored in biobanks that are therefore key insertion points for our study of privacy-related issues in an age of (post-) genomics.
"Privat Gen" investigates the existing privacy regimes - which encompass statutory regulation (both national and international), self-regulation, and technology-based privacy instruments - in relation to (post-) genomic research in general and more specifically in relation to the creation of large-scale life science infrastructures in Austria, Finland, and Germany. Each national case will be first studied from a different disciplinary angle by the consortium's four subprojects (juridical, ethical, sociological, and political science) and subsequently integrated into a coherent governance framework.
Furthermore, the privacy related complexity of these endeavours is amplified by increasing scientific collaborations that operate on a transnational scale. Private Gen's selection of case studies reflects this trend, since the cases under investigation play an important role in an effort to create the pan-European Biobanking and Biomolecular Resources Research Infrastructure (BBMRI). They are therefore excellent locations to study particular dynamics of privacy regimes that occur on a transnational scale.