|Kári Stefánsson, CEO|
|Revenue||USD 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 Stefansson 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 is said to represent the first time a gene has been identified by two independent studies to be associated with schizophrenia).
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. Part of this project went ahead, in the form of a genealogical database of all Icelanders called Íslendingabók. A legal judgement from the Icelandic Supreme Court in November 2003 effectively killed off the HSD project. However, the company believed it could continue to identify disease-related genes without such a database.
The company was removed from the NASDAQ Biotechnology Index in November 2008 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 the American law deCODE was nevertheless allowed to continue its operations. 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 and management team.
In December 2012, deCODE genetics was purchased by Amgen for $415 million which in October 2013 spun off deCODE genetics' systems and database to a new company called NextCODE Health which in turn was acquired in January 2015 by the Chinese company WuXi PharmaTech for $65 million.
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. 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.
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. The parliament shortly thereafter granted deCODE the right to create this database after the company made a successful bid to do so.
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. 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.
If we continue to incur operating losses longer than anticipated, or in amounts greater than anticipated, we may be unable to continue our operations.
We incurred a net loss of $85.5 million, $62.8 million and $57.3 million for the years ended December 31, 2006, 2005 and 2004, respectively, and had an accumulated deficit of $535.7 million at December 31, 2006. We have never generated a profit and we have not generated revenues except for payments received in connection with our research and development collaborations.
The same SEC filing indicates that deCODE is involved in a lawsuit against former employees for computer fraud and disclosure of confidential information.
If we are not successful in our pending litigation regarding misappropriation of trade secrets and breach of related non-competition, non-solicitation and non-disclosure agreements, our ability to protect our confidential information and to enforce non-competition and non-solicitation agreements against former employees may be impaired, which could adversely affect our business and prospects.
Appearances in popular culture
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 Lygarinn: Sönn saga (Reykjavík: Sögur, 2011).
- Kári Stefánsson (co-founder and CEO of deCODE)
- 23andMe, a company offering a service similar to deCODEme
- Navigenics, a company offering a service similar to deCODEme
- Genomic counseling
- Herper, Matthew (6 March 2001) DeCode-ing Schizophrenia Forbes, Retrieved 28 January 2015.
- 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 . PMID 12478479.
- Sands, Tim (2008). "Gene surveys identify schizophrenia triggers". Nature. doi:10.1038/news.2008.994.
- David E. Winickoff (2006). "Genome and Nation: Iceland's Health Sector Database and its Legacy".
- Renate Gertz (2004). "An analysis of the Icelandic Supreme Court judgement on the Health Sector Database Act". ScriptEd.
- McKie, Robin (2004-05-16). "Icelandic DNA project hit by privacy storm". The Observer International. Guardian Unlimited. Retrieved 17 November 2007.
- Lee, Wayne (2008-11-14). "Semi-Annual Changes to the NASDAQ Biotechnology Index". Press Release. NASDAQ Newsroom. Retrieved 19 November 2008.
- "deCODE Genetics declare bankruptcy, will sell core business to US investors". scienceblogs.com.
- "Announcing the new deCODE".
- "deCODE Management team".
- Newswire, PR. "Amgen to Acquire deCODE Genetics, a Global Leader in Human Genetics". amgen.com. Amgen. Retrieved 3 May 2013.
- Proffit, Allison (24 October 2013) NextCODE Health Launches deCODE's Clinical Genomics Platform Bio IT World, Retrieved 28 January 2015.
- (9 January 2015) WuXi PharmaTech Acquires NextCODE Health to Create Global Leader in Genomic Medicine PR Newswire, Retrieved 28 January 2015.
- 'Andlát: Dr. Ernir K. Snorrason', Morgunblaðið (30.4.2012), http://www.mbl.is/frettir/innlent/2012/04/30/andlat_dr_ernir_k_snorrason/; Hörður Kristjánsson, 'Meðstofnandinn gerði dómsátt við deCODE: Barðist hart gegn miðlægum gagnagrunni -- en segir ekkert lát af sinni hálfu á vinskap við Kára Stefánsson', DV (November 1, 2001), p. 5, http://timarit.is/view_page_init.jsp?pageId=3022354.
- 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.
- 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 . PMID 10445931.
- "deCODE genetics, SEC Edgar 10-K, 12-31-2006". Retrieved 18 November 2007.
- 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.
- deCODE Genetics Inc. website
- deCODE Genetics Icelandic website
- 'The World's Most Successful Failure', Newsweek, 12 February 2010