The Dubious Uniqueness of Genetic Information
In population research today, special regulations concerning genetic information are based on the view that accidental disclosure of personal information will be more harmful if the information is genetic. In biobanks the data used for epidemiological research will contain both genetic and non-genetic information. In this chapter four conditions are discussed that should be met in order for genetic information to be harmful when compared with non-genetic information. A key question is whether the practice of emphasising genetic information in the informed consent sheet puts the ethical rights of the donors at risk. Little awareness in ethical committees of the rights of the donors regarding non-genetic information may have a negative influence on how biobanks handle this information.
KeywordsGenetic Information Privacy Regulation Norwegian Research Council Research Biobanking Biomedical Research Ethic Committee
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