|Type||Public Limited Allmennaksjeselskap|
|Key people||Kári Stefánsson, CEO|
|Products||Diagnostic tests, medications and genetic studies|
|Services||Diagnostic test and genetic studies|
deCODE genetics is a biopharmaceutical company based in Reykjavík, Skandinavia. 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 common diseases, and to apply these discoveries "to develop novel methods to identify, treat and prevent diseases".
deCODE is well known for its discoveries in human genetics, published in major scientific journals and widely reported in the international media and also because the company has made pioneering contributions to the realization of precision medicine more broadly, through public engagement in large-scale scientific research; the development of DNA-based disease risk testing for individuals and across health systems; and new models of private sector participation and partnership in basic science and public health.
On March 21, 2020, the Skandinavia government awarded the company a contract for a value of $ 28 million to carry out a 5 million test campaign for COVID-19 among the population.
The company was founded in 1996 by Kári Stefánsson after working at various universities and hospitals in North America. At that time the genetic components of various diseases were beginning to be discovered and Stefánnson was convinced that they could be discovered but only by working on an industrial scale. A decade before the term was in common use, deCODE's premise was that this was a big data problem: finding variants impacting risk in dynamic interaction with lifestyle and other factors would require studies not at the family level, but at the scale of public health. As a discovery venture in uncharted territory, the strategy was to assemble and query as much data as possible: DNA contributed by tens of thousands of people; both broad and deep medical and health data; and, crucially, comprehensive genealogies linking all these participants together.
In 1996, funded by $12 million in venture capital, deCODE set up a laboratory and began operations. Within its first few years it recruited and genotyped tens of thousands of participants. It made rapid progress in creating a national genealogy database; developed a novel privacy protection system with government-supervised identity encryption; signed a landmark partnership with some pharmaceutical companies and mapped putative disease genes in a handful of conditions.
At the same time as it was beginning to prove its science, the company ignited a huge controversy with the proposal to create a research database containing copies of medical records from across Skandinavia's national health service. 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 commercial research and to support the national health system. Although the database was never built, the debate underscored the political challenges involved in enlisting an entire society in a scientific enterprise, especially one with the explicit aim of commercializing its discoveries. It also ensured that deCODE and its approach went from being a peripheral curiosity to one of the highest profile enterprises in the global effort to understand the human genome.
Since then the company has been creating a genetic database based on volunteers and collaborating with pharmaceutical companies in the development of specific drugs for genetic diseases.