deCODE genetics

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deCODE genetics, Inc.
HeadquartersReykjavík, Iceland
Key people
Kári Stefánsson, CEO
RevenueUSD 77M (2015)
Number of employees

deCODE genetics, Inc. (Icelandic: Íslensk erfðagreining) is a biopharmaceutical company based in Reykjavík, Iceland. The company was founded in 1996 by Kári Stefánsson[1] to identify human genes associated with common diseases using population studies, and apply the knowledge gained to guide the development of candidate drugs. The company isolated genes believed to be involved in cardiovascular disease, cancer and schizophrenia, among other diseases (the company's research concerning the latter[2] is said to represent the first time a gene has been identified by two independent studies to be associated with schizophrenia[3]).

deCODE's approach to identifying genes, and in particular its proposal to set up an Icelandic Health Sector Database (HSD) containing the medical records of all Icelanders, was controversial, and prompted national and international criticism for its approach to the concepts of privacy and consent.[4]

The company was removed from the NASDAQ Biotechnology Index in November 2008.[5] In November 2009 the company filed for chapter 11 bankruptcy in a US court, listing total assets of $69.9 million and debt of $313.9 million. According to American law, deCODE was allowed to continue its operations.[6] In January 2010 most of deCODE genetics Inc.’s assets were purchased by Saga Investments LLC – an investment company whose owners include Polaris Venture Partners and ARCH Venture Partners - who said they intended to continue most services including deCODE diagnostics and deCODEme™ personal genome scans[7] and management team.[8]

In December 2012, deCODE genetics was purchased by Amgen for $415 million[9] which in October 2013 spun off deCODE genetics' systems and database to a new company called NextCODE Health[10] which in turn was acquired in January 2015 by the Chinese company WuXi PharmaTech for $65 million.[11]


DeCODE was founded in 1996[12] by Ernir Kristján Snorrason, Kári Stefánsson, and Kristleifur Kristjánsson.[13]

In the late 1990s deCODE proposed to create the world's first population-wide genomic biobank by collecting data from the entire population of Iceland, which numbered 270,000 at the time.[14] The plan had these three major components: creating a genealogical database, collecting biobank specimens by means of which genotyping could be done, and creating a national electronic health record system to connect genetic data to each individual's phenotype.[14]

In December 1998, with lobbying from deCODE, the Icelandic Parliament passed the Act on Health Sector Database which permitted public bidding for the right of a company to create this health database and use it for various purposes.[14] The parliament shortly thereafter granted deCODE the right to create this database after the company made a successful bid to do so.[15]


As a step toward the personal genome, the company has announced that its deCODEme service is available for $985 to anyone who wishes to send a cheek swab to learn details about disease risk and ancestry. This service was launched in November 2007 and thereby became the first web-based service to offer a comprehensive genome scan and an online analysis of an individual's DNA. More than one million single nucleotide polymorphisms are included in the scan.[16] deCODEme claims that the DNA profile it provides can supply its customers with a basis from which they are able calculate the relative risk of developing these diseases and thereby enable them to make better informed decisions about medical prevention and treatment. The deCODEme service currently includes information on the genetic susceptibility to close to 45 common diseases such as myocardial infarction, atrial fibrillation, several types of cancers and type-2 diabetes as well as providing insights into distant ancestry and geographical origins.

The deCODEme service was discontinued in January 2013 and deCODE genetics stopped selling personal genetic tests altogether.[17]

Appearances in popular culture[edit]

The work of deCODE is criticised by Arnaldur Indriðason's novel Jar City from 2000, which was adapted into a 2006 film of the same name.[18]

deCODE and Kári Stefánsson are satirised as VikingDNA and Professor Lárus Jóhannsson in Dauðans óvissi tími by Þráinn Bertelsson (Reykjavík: JPV Útgáfu, 2004).

deCODE and specifically Kári Stefánsson is presented as the creator of monstrous genetic hybrids in Óttar M. Norðfjörð's satirical 2007 work Jón Ásgeir & afmælisveislan (Reykjavík: Sögur, 2007), and the history of DeCODE appears both directly and in allegorised form (under the fictional name OriGenes) in the same author's novel Lygarinn: Sönn saga (Reykjavík: Sögur, 2011). deCODE is the model for the company CoDex, in CoDex 1962 by Sjón.[19][20]

See also[edit]


  1. ^ Herper, Matthew (6 March 2001) DeCode-ing Schizophrenia Forbes, Retrieved 28 January 2015.
  2. ^ Stefansson H, Sarginson J, Kong A, et al. (January 2003). "Association of neuregulin 1 with schizophrenia confirmed in a Scottish population". Am. J. Hum. Genet. 72 (1): 83–7. doi:10.1086/345442. PMC 420015. PMID 12478479.
  3. ^ Sands, Tim (2008). "Gene surveys identify schizophrenia triggers". Nature. doi:10.1038/news.2008.994.
  4. ^ David E. Winickoff (2006). "Genome and Nation: Iceland's Health Sector Database and its Legacy".
  5. ^ Lee, Wayne (2008-11-14). "Semi-Annual Changes to the NASDAQ Biotechnology Index". Press Release. NASDAQ Newsroom. Retrieved 19 November 2008.
  6. ^ "deCODE Genetics declare bankruptcy, will sell core business to US investors". Archived from the original on 2012-05-15.
  7. ^ "Announcing the new deCODE". Archived from the original on 2011-11-17.
  8. ^ "deCODE Management team". Archived from the original on 2012-10-01.
  9. ^ Newswire, PR. "Amgen to Acquire deCODE Genetics, a Global Leader in Human Genetics". Amgen. Retrieved 3 May 2013.
  10. ^ Proffit, Allison (24 October 2013) NextCODE Health Launches deCODE's Clinical Genomics Platform Bio IT World, Retrieved 28 January 2015.
  11. ^ (9 January 2015) WuXi PharmaTech Acquires NextCODE Health to Create Global Leader in Genomic Medicine PR Newswire, Retrieved 28 January 2015.
  12. ^
  13. ^ 'Andlát: Dr. Ernir K. Snorrason', Morgunblaðið (30.4.2012),
  14. ^ a b c Greely, H. T. (2007). "The Uneasy Ethical and Legal Underpinnings of Large-Scale Genomic Biobanks". Annual Review of Genomics and Human Genetics. 8: 343–364. doi:10.1146/annurev.genom.7.080505.115721. PMID 17550341.
  15. ^ Chadwick, R. (1999). "The Icelandic database—do modern times need modern sagas?". BMJ. 319 (7207): 441–444. doi:10.1136/bmj.319.7207.441. PMC 1127047. PMID 10445931.
  16. ^ "deCODEme".
  17. ^
  18. ^ Burke, Lucy, 'Genetics and the Scene of the Crime: DeCODING Tainted Blood', Journal of Literary & Cultural Disability Studies, 6 (2012), 193–208. doi:10.3828/jlcds.2012.16.
  19. ^ Reykjavík: JPV, 2016.
  20. ^ Einar Kári Jóhannsson, 'Þjóð(ar)saga Sjóns: Pólitísk ummyndun á sameiginlegum minningum Íslendinga í sögulegum skáldverkum Sjóns' (unpublished MA thesis, University of Iceland, 2018), p. 67.

Further reading[edit]

  • Fortun, Michael, Promising Genomics: Iceland and deCODE Genetics in a World of Speculation. Berkeley: University of California Press, 2008.

External links[edit]

Coordinates: 64°08′08″N 21°56′45″W / 64.13556°N 21.94583°W / 64.13556; -21.94583