Jus og lovverk

De nye sekvenseringsteknologiene skaper samlinger av svært sensitive data, som i prinsippet ikke lar seg fullstendig avidentifisere. Opplysningene inneholder en mengde informasjon av betydning for individets helse som vi bare i dag kan tolke en liten del av. Vi antar disse oplysningene vil være av stor betydning for personlige helsetjenester, og de er svært interessant for epidemiologisk forskning. Dagens lovverk er ikke tilpasset denne nye utviklingen, og hvordan slike tester skal utføres og opplysningene lagres og brukes må utrdes og besluttes. I dette prosjektet ser vi på disse spørsmålene.Developments in recent years have made it possible to examine all the DNA in a patient, including all the genes. This can potentially create new opportunities for diagnosis, treatment and prevention. Such use of human DNA does, however, raise a number of legal issues.

Several of these legal issues will be addressed in The Research Council of Norway funded project «Legal Regulation of Information Processing Relating to Personalized Cancer Medicine». The project is led by Professor Jan Helge Solbakk, and is a collaboration between The Centre for Medical Ethics at The Medical Faculty, University of Oslo and The Norwegian Research Center for Computers and Law at The Faculty of Law, University of Oslo. A network of partners from The University of Bergen, The Norwegian University of Science and Technology, The University of Copenhagen, Boston University, and The University of Oxford is associated with the project. A PhD Candidate will write a legal dissertation on the subject, and a number of research seminars and open meetings will be organized in cooperation with The Norwegian Biotechnology Advisory Board.

Issues relating to data privacy law and health law will be addressed in the project, and the legal research will be conducted in close collaboration with the medical research community.

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