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
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
- ^ 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.
- ^ Arnason, V. (2004). "Coding and Consent: Moral Challenges of the Database Project in Iceland". Bioethics. 18 (1): 27–49. doi: 10.1111/j.1467-8519.2004.00377.x. PMID 15168697. S2CID 7633275.
External links
- Official website, English translation
- World Health Organization summary
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
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
- ^ 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.
- ^ Arnason, V. (2004). "Coding and Consent: Moral Challenges of the Database Project in Iceland". Bioethics. 18 (1): 27–49. doi: 10.1111/j.1467-8519.2004.00377.x. PMID 15168697. S2CID 7633275.
External links
- Official website, English translation
- World Health Organization summary