Act on Health Sector Database

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.

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

Controversies

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]

gollark: Grass blocks, I mean.
gollark: I'll sell grass for 1000KST/i.
gollark: you could make a nationbut it would be USELESS
gollark: That's what happens if your files are stored as pings which need to be constantly resent and your connection drops.
gollark: pingfs has unfortunately just lost my files.

References
  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.
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