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FUGE-Funksjonell genomforskn.i Norg

Mapping the language of research-biobanks and health registries: From traditional biobanking to research biobanking

Awarded: NOK 5.0 mill.

Project Number:


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Project Period:

2004 - 2007


Subject Fields:

The aim of the project is to investigate some of the ethical, legal and social challenges raised by reseach biobanking in its different moderen forms and formats. Besides analysing current legislation, other forms of regulation and public debates concern ing biobanks in European and other elevant jurisdictions, the project also includes and “in-vivo” study of ethical, legal and social issues likely to emerge from two new genomics/functional genomics projects, BIOHEALTH-NORWAY and GENOMEUTWIN. The traditional approach to research biobanking has been to extend the informed consent and other research ethics procedures that are already in place and to supplement them by measures directly transferred from th area of data protection. Our main hypot hesis is that instead of attempting to extend the analysis of the traditional approach, it will be fuitful to investigate analogies from a range of areas outside medical research, where oeople transfer something to a common institution. By developing the se analogies, analysing their implications, and identifying their limitations we believe it will be possible to: a) achieve a deeper understanding of the structural arrangement of research biobanking, b) critically assess the vocabulary prevailing in the field of biobanking, as well as, c) make recommendations regarding different ways in which a research biobank could be structured as a social institution.

Funding scheme:

FUGE-Funksjonell genomforskn.i Norg

Thematic Areas and Topics

No thematic area or topic related to the project