About

Project acronym

GeneBanC

Project full title

Genetic bio and dataBanking: Confidentiality and protection of data. Towards a European harmonisation and policy.

Funding

Genebanc is a Specific Targeted Research Project (STREP) funded by the European Commission in the Sixth Framework Programme. It fits in the desired objectives of the Science and Society Work Programme 2005-2006, matching the issue “Deepening the understanding of ethical issues” of the call FP6-2005-Science-and-society-14.

Project number: FP6-036-751

Project partners

  • Kris Dierickx (Co-ordinator, Centre for Biomedical Ethics and Law, K.U.Leuven, Belgium)
  • Herbert Gottweis (Department of Political Science, University of Vienna, Austria)
  • Jan Helge Solbakk (Section for Medical Ethics, University of Oslo, Norway)
  • Judit Sandor (Centre for Ethics and Law in Biomedicine
  • Central European University, Budapest)
  • Darren Shickle (Institute of Health Sciences and Public Health Research, University of Leeds, U.K.)
  • Herman Nys (Centre for Biomedical Ethics and Law, K.U.Leuven, Belgium)
  • Pascal Borry (Centre for Biomedical Ethics and Law, K.U.Leuven, Belgium)

Project abstract

The last few years have witnessed an important expansion of collection and processing of human biological samples and of the related information data. Biobanks are huge repositories of human biological specimens and have a strategic importance for genetic research, clinical care and future treatments. This research project aims to investigate the ethical, legal and social issues of three types of biobanks: classical banking, population banking and forensic DNA databases. The first objective of the research project is to study the issue of privacy and confidentiality. There are reasons to believe that an unquestioned transfer of the traditional concept of confidentiality to the three types of biobanking described may be problematic, and that the concept needs to be re-analysed in these new contexts. The second objective is to investigate the existing regulatory framework of biobanks across the EU and to focus on the collection and analysis of legislation and regulation regarding the establishment, management and functioning of classical, population and forensic biobanks. The analysis of existing legislation will also provide some suggestions for “best rules”. The third objective is to investigate the ethical and policy issues related to forensic databases. In a post 9/11 era forensic genetic databases (i.e. crime, terrorism) generate many questions that have had no attention until now on a European level. The fourth objective is to investigate governance aspects of biobanks. The objective is to study the social, ethical, scientific-technological, and political-regulatory embedding of biobanks, to help the understanding of the ethical, socio-economic, scientific-technological and political implications of biobank development on the local and the national level, and in the transnational field and thereby to contribute to a better understanding of biobank governance. The results obtained within the different objectives described above will be of great use for the development of policy oriented recommendations concerning the organisation and management of small scale biobanks, population databanks and forensic DNA databases. Also, we aim to make proposals in order to reach where appropriate a harmonized regulatory framework across the European Union.