deCODE genetics

deCODE genetics, Inc. (Icelandic: Íslensk erfðagreining) is a biopharmaceutical company based in Reykjavík, Iceland. The company was founded in 1996 by Kári Stefansson^[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 attempt to set up an Icelandic Health Sector Database (HSD) containing the medical records and genealogical and genetic data of all Icelanders, was very controversial, and prompted national and international criticism for its approach to the concepts of privacy and consent.^[4] 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.^[5] However, the company believed it could continue to identify disease-related genes without such a database^[6]

The company was removed from the NASDAQ Biotechnology Index in November 2008^[7] 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.^[8] 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^[9] and management team.^[10]

In December 2012, deCODE genetics was purchased by Amgen for $415 million^[11] which in October 2013 spun off deCODE genetics' systems and database to a new company called NextCODE Health^[12] which in turn was acquired in January 2015 by the Chinese company WuXi PharmaTech for $65 million.^[13]

History

DeCODE was founded in 1994 by Ernir Kristján Snorrason, Kári Stefánsson, and Kristleifur Kristjánsson.^[14]

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.^[15] 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.^[15]

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.^[15] The parliament shortly thereafter granted deCODE the right to create this database after the company made a successful bid to do so.^[16]

deCODEme

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.^[17] 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.^[18]

SEC filing

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:^[19]

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

The work of deCODE is criticised by Arnaldur Indriðason's novel Jar City from 2000, which was adapted as a film in 2006.^[20]

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).

See also

• Genomics
• 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

References

External links

• deCODE Genetics Inc. website
• deCODE Diagnostics
• deCODEme website
• deCODEyou blogsite
• 'The World's Most Successful Failure', Newsweek, 12 February 2010

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