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Act on Health Sector Database

From Wikipedia, the free encyclopedia

The Act on Health Sector Database, also known as Act on Health Sector Database, No. 139/1998, the Health Sector Database Act and in media by other colloquial names, was a 1998 act of the Icelandic Parliament which allowed the Icelandic government to grant a license to a private company for the creation of a national biological database to store health information which could be used for research. The act was noted for boldly introducing policy related to biobanks and was the subject of controversy.[citation needed]

deCODE genetics did most of the lobbying for the act and was the beneficiary of the license to create the database.[citation needed]

Controversies

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The passing of this act spurred international discussion about what policies were already in place and what differences in policy existed among biobanks.[1]

The establishment of a national database for all Icelandic citizens raised discussion about the nature of the informed consent process for the project.[2]

References

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  1. ^ Austin, M. A.; Harding, S.; McElroy, C. (2003). "Genebanks: A Comparison of Eight Proposed International Genetic Databases". Community Genetics. 6 (1): 37–45. doi:10.1159/000069544. PMID 12748437. S2CID 20931713.
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