Genetic Databases and Consent for Use of Medical Records

• Published in: Public Health Genomics
• Main Author: Gevers, J.K.M.
• Format: Article in Journal/Newspaper
• Language: English
• Published: S. Karger AG 2004
• Subjects: Iceland
• Online Access: http://dx.doi.org/10.1159/000082256; https://www.karger.com/Article/Pdf/82256

The legislation on the Icelandic genetic database provides for an opting-out system for the collection of encoded medical information from individual medical records. From the beginning this has raised criticism, in Iceland itself and abroad. The Supreme Court has now decided that this approach of presumed consent is not unconstitutional per se, but that there are not sufficient safeguards to ensure that the information collected is not traceable to individuals. The decision of the court is of importance for the debate (at national and international level) on the legal and ethical aspects of population-based genetic databases. Furthermore, it is interesting because it recognizes the right of close relatives of a deceased person to oppose the collection and use of his or her medical data for genetic research, at least as long as these data may still be identifiable.