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
The (; ), anglicised as Althingi or Althing, is the supreme national parliament of Iceland. It is the oldest surviving parliament in the world. The Althing was founded in 930 at (' thing fields' or 'assembly fields'), about east of what lat ...
which allowed the Icelandic government to grant a license to a private company for the creation of a national
biological database
Biological databases are libraries of biological sciences, collected from scientific experiments, published literature, high-throughput experiment technology, and computational analysis. They contain information from research areas including geno ...
to store health information which could be used for research. The act was noted for boldly introducing policy related to
biobanks
A biobank is a type of biorepository that stores biological samples (usually human) for use in research. Biobanks have become an important resource in medical research, supporting many types of contemporary research like genomics and personalize ...
and was the subject of controversy.
deCODE genetics
deCODE genetics () is a biopharmaceutical company based in Reykjavík, Iceland. The company was founded in 1996 by Kári Stefánsson with the aim of using population genetics studies to identify variations in the human genome associated with c ...
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.
The establishment of a national database for all Icelandic citizens raised discussion about the nature of the
informed consent
Informed consent is an applied ethics principle that a person must have sufficient information and understanding before making decisions about accepting risk. Pertinent information may include risks and benefits of treatments, alternative treatme ...
process for the project.
References
External links
* {{official website, https://web.archive.org/web/20120402000839/http://eng.velferdarraduneyti.is/acts-of-Parliament/nr/17659%7D%7D, English translation
World Health Organization summary
Biobanks
Health law in Iceland
Government databases
Medical databases
Database law
Science and technology in Iceland
1998 in Iceland
1998 in law