Icelandic Genetics Database

Christopher Tillquist & Chandler Gatenbee

In 1998, the Althingi (Iceland's parliament) passed the Act on a Health Sector Database (No. 139) authorizing a centralized database of nonpersonally identifiable health data for all Icelanders. The Althingi subsequently granted the firm deCODE genetics, Inc. (henceforth, deCODE) an exclusive license to establish and operate the database. Combined with pedigrees and biological samples, deCODE aimed to use the database to identify alleles of genes that predispose Icelanders to specific diseases. This project was the first large-scale commercial attempt to combine population genomics and epidemiological genetics. The history and implementation of the Act is of great interest as a case study for epidemiological genetics and the issue of genetic discrimination and as what constitutes fair commercial use of publicly contributed and controlled data. The objective of the bill was to establish a new central database of medical records, with the goal of improving public health in Iceland. The legislation intentionally ...

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