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.

PRIVATE 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.

Why it matters!

The convergence of technologies in the boundary zone of (post-) genomics and ICT creates a new playing field. Old issues are redefined and new issues arise. One of the fields in which this process emerges in an acute way is privacy. Especially the research area of (post-) genomics is accompanied by an exponential increase of population surveillance capacity. In order to better understand gene - environment and gene - gene interaction increasing amounts of bio information are collected and stored for the purpose of biomedical research. This information is subsequently shared, disseminated and used in ever more collaborative research environment, which leads to the multiplication and dissemination of personal information on a potentially global scale. These developments diminish individuals’ possibilities to control information that is related to them and therefore increases the need to better understand issues that are related to the concept of genomic privacy that gained prominence during the last decade as an important regulatory issue in the wage of the genomic enterprise.

The rapid developments almost force us to rethink the concept of genetic privacy in its wider dimension including legal, social, political, ethical, technological and organizational aspects.

Genetic privacy is often framed as informational self-determination that is threatened by non-voluntary disclosure of genetic information. The possibility to ensure this kind of genetic privacy in biomedical research in an age of post genomics has been questioned recently by several publications.