deCODE genetics

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deCODE genetics, Inc.
Industry Genetics
Founded 1996
Headquarters Reykjavík, Iceland
Key people Kári Stefánsson, Chairman; Earl M. 'Duke' Collier, Jr., CEO
Revenue USD 43.95M
Employees 480

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

deCODE's approach to identifying genes, and in particular its attempt to set up an Icelandic Health Sector Database (HSD) containing the medical records and genealogical and genetic data of all Icelanders, has been very controversial, and prompted national and international criticism for its approach to the concepts of privacy and consent [2] A legal judgement from the Icelandic Supreme Court in November 2003 effectively killed off the HSD project.[3] However, the company believes it can continue to identify disease-related genes without such a database[4]

The company was removed from the NASDAQ Biotechnology Index, effective with the market open on Monday, November 24, 2008[5] On November 2009 a press release announced that the company had filed for chapter 11 bankruptcy in a US court, listing total assets of $69.9 million and a debt of $313.9 million. According to the American law deCODE will continue its operations.[6] In Jan 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 intending 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.[9]


DeCODE was founded in 1994 by Ernir Kristján Snorrason, Kári Stefánsson, and Kristleifur Kristjánsson.[10]

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.[11] 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.[11]

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.[11] The parliament shortly thereafter granted deCODE the right to create this database after the company made a successful bid to do so.[12]


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.[13] 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.

As of April 2013, the service has been discontinued for selling genetic services from the website.[14]

SEC filing[edit]

deCODE's 2006 10-K SEC filing reveals that their net losses to date are in excess of 530 million dollars, and that they have never turned a profit:[15]

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 with Roche, Merck and others, from contract services, from sales of Emerald BioSystems products and instruments, and grant funding. Our research and development expenditures and selling, general and administrative costs have exceeded our revenue to date, and we expect to spend significant additional amounts to fund research and development in order to enhance our core technologies and undertake product development (including drug development and related clinical trials). We do not expect to receive royalties or other revenues from commercial sales of products developed using our technology in the near term. It may be several years before product revenues materialize, if they do at all. As a result, we expect to incur net losses for several years. If the time required to generate product revenues and achieve profitability is longer than we currently anticipate, or if the level of losses is greater than we currently anticipate, we may not be able to continue our operations.

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.

On August 4, 2006 we commenced an action in the U.S. District Court for the Eastern District of Pennsylvania against five former employees for misappropriation of our trade secrets and intellectual property, related breach of non-competition, non-solicitation, and non-disclosure provisions of their employment agreements, and violation of the federal Computer Fraud and Abuse Act in connection with their employment by The Children’s Hospital of Philadelphia (CHOP). It is possible that a judgment against us with respect to our allegations of trade secret misappropriation may negatively affect our ability to protect some of what we consider to be our confidential information under the law of trade secrets. Also, it is possible that a judgment against us with respect to the non-competition, non-solicitation, or non-disclosure agreements with the individual defendants (1) would allow the defendants to engage in competition with us, (2) may cause other current or former employees to test the validity of their non-competition, non-solicitation, and non-disclosure agreements when they might otherwise have refrained from doing so, or (3) may cause other institutions besides CHOP to hire our current or former employees when they might otherwise have refrained from doing so. Any of these events could impair our ability to compete for collaborative arrangements, for access to DNA samples or for product or technology licensing arrangements and ultimately could adversely affect our ability to develop and market products.

Appearances in popular culture[edit]

The work of deCODE is criticised by Arnaldur Indriðason's novel Jar City from 2000, which was adapted as a film in 2006.[16]

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).

See also[edit]


  1. ^ 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. 
  2. ^ David E. Winickoff (2006). "Genome and Nation: Iceland's Health Sector Database and its Legacy". 
  3. ^ Renate Gertz (2004). "An analysis of the Icelandic Supreme Court judgement on the Health Sector Database Act". ScriptEd. 
  4. ^ McKie, Robin (2004-05-16). "Icelandic DNA project hit by privacy storm". The Observer International. Guardian Unlimited. Retrieved 2007-11-17. 
  5. ^ Lee, Wayne (2008-11-14). "Semi-Annual Changes to the NASDAQ Biotechnology Index". Press Release. NASDAQ Newsroom. Retrieved 2008-11-19. 
  6. ^ "deCODE Genetics declare bankruptcy, will sell core business to US investors". 
  7. ^ "Announcing the new deCODE". 
  8. ^ "deCODE Management team". 
  9. ^ Newswire, PR. "Amgen to Acquire deCODE Genetics, a Global Leader in Human Genetics". Amgen. Retrieved 3 May 2013. 
  10. ^ 'And­lát: Dr. Ern­ir K. Snorra­son', Morgunblaðið (30.4.2012),; 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,
  11. ^ 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.  edit
  12. ^ 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.  edit
  13. ^ "deCODEme". 
  14. ^
  15. ^ "deCODE genetics, SEC Edgar 10-K, 12-31-2006". Retrieved 2007-11-18. 
  16. ^ 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.

External links[edit]

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