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FUGE-Funksjonell genomforskn.i Norg

Consented to contribute to the common good?

Awarded: NOK 2.0 mill.

The scientific aim of the ”consentenced to contribute to the common good?” project is to exprore ethical relationships between the research subjects contributing to a biobank, and the perceived outcome of biobank research. In the recent Norwegian biobank law proposal, this relationship is regulated through an informed consent made by the research subject. in this project, we will actively seek the arguments and reflections of researchers and research subjects related to the HUNT biobank, and critically analyze the ethics of informed consent. the legitimacy on the one hand, and the quality of the research material on the other hand, of a biobank involved in genetic research will, it is presumed, partly depend on the research subjects’ consent to partici pate in such an enterprise. The focus on informed consent could also be seen as a downplay and individualization of, the general ethical and political dilemmas involved in genetic biobank research – especially with the prospects of c commercialization. A thorough reflection on the ethical aspects of the establishment and use of biobanks is demanded both at the local level at the HUNT study, from the FUGE programme, and from the public. This project proposes to marry such an ethical reflection with an empirical study. Doing this, we want to make possible refelction on the discourse on the ethics of genetic research taking place outside of academia and the mass media, but inside of the actual scientific activity. Such reflection is vital to the continued legitimacy of epidemical studies, and to the development of ethically sound genetic research in Norway.

Funding scheme:

FUGE-Funksjonell genomforskn.i Norg