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FUGE-Funksjonell genomforskn.i Norg

Hereditary diseases: An empirical approach to ethical and psychosocial challenges

Tildelt: kr 5,5 mill.

Modern gene technology has made it possible to identify individuals with an increased risk for diseases, and rapid development in gene technology will probably have a substantial impact on treatment and care in the future. While genetic research is making rapid progress, empirical studies of the psychosocial and ethical consequences of such biotechnological developments are still in their early stages. In this challenging situation, with a potential gap between advanced DNA technology, public understandi n g of gene technology and its clinical implementation, it is increasingly important to gain evidence based information about how these new possibilities will affect potential patients. In order to deal effectively with the new challenges, and be able to de liver optimal care, multi-disciplinary research efforts are essential. Also, despite a growing number of studies of the psychosocial implications of genetic counseling, well-designed prospective multicenter studies are rare. The Berge Bergen network has been invited to join the Uppsala University/Uppsala University Hospital group on Ethics in biomedicine (UEBM), directed by Mats G. Hansson. One ot he major general research goals of the studies proposed here is to gain such knowledge. This can be done by establishing cooperation and joint projects with well-established research groups in Scandinavia.

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FUGE-Funksjonell genomforskn.i Norg

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