Title of Presentation
“Opening the door just barely for return of results – a feasible solution?”
Date and Place
Berge Solberg is a professor in medical ethics and head of the teaching in medical ethics in the medical school at the Norwegian University of Science and Technology (NTNU). He is the deputy leader of the National Committee for Medical and Health Research Ethics (NEM) in Norway, and he is the secretary of the Clinical ethics committee at St. Olavs Hospital in Trondheim. Between 2004 and 2013 he was a member of The Norwegian Advisory Board on Biotechnology, and thereby worked intensively with policy issues regarding prenatal diagnosis, assisted reproduction and genetic testing in Norway. Solberg wrote his PhD on the ethics of prenatal diagnosis. Recent years, much of his focus has been on the ethics of biobank research, the development of large scale biobank infrastructures as well as the use of next generation sequencing technology. He is now a member of the BBMRI-ERIC Common Service ELSI.
Return of results in genetic research has been widely discussed for several years. In Norway the debate has been particular difficult because of competing interpretations of several laws involved. Earlier this year, I presented the new guidelines for genetic research in Norway, on behalf of a working group within the ethics committee system. The guidelines are informed by the international debate on the topic, and of central virtues and values in the field. Norway has opened the door for return of results, but just barely. In this paper I will present the arguments and the values leading to the Norwegian conclusion. I will critically examine whether it is a sustainable and feasible position.