Islands+nasjonale+helsedatabase

=Iceland's Genetic History=

Iceland's Genetic History is a biotechnological company compiling a medical database of Icelander.[[image:http://www.actionbioscience.org/figures/hlodanphoto.jpg align="right" caption="Icelandic family genealogy relies on the tradition of using the first name of the father as the basis for a child’s last name. ”Sonur” is added to the fathers name if the child is a boy, and ”dóttir” if the child is female. Source: Virtually Virtual Iceland."]]

Research on genetic variation aims to understand how genes function and requires the comparison of DNA samples from groups of individuals to identify variations that might have importance for health or disease.[|1] This work is easier if the samples are linked to accurate medical records and genealogic information. Iceland has medical records for all its citizens going back to World War I and detailed genealogic information going back even further. Because Iceland's small population (270,000) has long been isolated and homogeneous, it is thought by many to be an ideal place to search for disease-related genes. Journalists have cavalierly labeled Iceland's "the most homogeneous population on earth"[|2] and have described the country as an "island so inbred that it is a happy genetic hunting ground."[|3] In December 1998, at the instigation of a for-profit U.S. corporation, deCODE genetics, and its chief executive officer, Kári Stefánsson, Iceland's parliament passed the Health Sector Database Act, which authorized the minister of health to grant an exclusive license to a for-profit corporation to create a data base of the medical records of all Icelandic citizens.[|4] The government of Iceland can use the data base for planning and policy purposes, but the licensee has control over access to the data base for commercial purposes for 12 years. Individually identifiable data may not be disclosed, and confidentiality is protected by a variety of methods, including penalties of up to three years in prison for violations. A Data Protection Commission receives medical records from physicians and hospitals and codes and encrypts them before giving them to the licensee. Similar projects are ongoing or under active discussion in the United States,[|5] the United Kingdom,[|6] Sweden,[|7] and Estonia,[|8] and many others are likely to follow. Thus, the Icelandic experience may provide lessons and guidance. In early 2000, the Icelandic minister of health granted the data-base license to Íslensk erfdagreining, a wholly owned Icelandic subsidiary of deCODE. Opposition to the project has developed and includes the Iceland Medical Association. Dissent seems to be fueled primarily by a belief that participation in the data base has been foisted on the citizens without time for proper debate, that measures to protect privacy are inadequate for a for-profit venture, that academic researchers will not have proper access to the data, and that individual consent should be required before medical records are included in the data base.

Les mer

Kilder: http://www.actionbioscience.org/genomic/hlodan.html http://nejm.highwire.org/cgi/content/extract/342/24/1830