Biobanks: The Status and Construction of informed Consent

Prosjekt Avdeling: Uni Research Rokkansenteret periode: 01.03.04 - 31.12.07

Om prosjektet

The project will study how informed consent, in the context of biobanks, is interpreted and infused with meaning. Informed consent is a central part of the legal regulation of medical practice and research. To many this concept has become the key to bridging the gap between experts and lay people, and legitimising genetic research involving humans and human material. Functional genomics has made the establishment of biobanks both important and controversial issues. They are seen as future sources for a wide range of projects focusing on the role of genetic structures in different diseases. Ethical debates about biobanks have been concentrated around the role, understanding and extent of the informed consent. It might be useful to divide it in its two composite parts. The background for the prominent position of consent might be sought in the social individualization, the pluralization of cultural norms and the strengthening of the juridical dimension in society. The problematic status of "informed" is partly due to the highly technical and specialized language necessary to understand the perspectives of research, uncertainty of research itself and the blindness of the scientific perspectives, excluding broader historical, cultural, social and human consequences.

Funding source: The Norwegian Research Council