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DeCODE genetics
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DeCODE genetics
deCODE genetics (Icelandic: Íslensk erfðagreining) is a biopharmaceutical company based in Reykjavík, Iceland. 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."
As of 2019, more than two-thirds of the adult population of Iceland was participating in the company's research efforts, and this "population approach" serves as a model for large-scale precision medicine and national genome projects around the world. deCODE is probably best known for its discoveries in human genetics, published in major scientific journals and widely reported in the international media. But it has also 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.
Since 2012, it has been an independent subsidiary of Amgen and its capabilities and discoveries have been used directly in the discovery and development of novel drugs. This example has helped to spur investment in genomics and precision therapeutics by other pharmaceutical and biotechnology companies.
In 1996, when Stefansson left a tenured position at Harvard Medical School to return to Iceland to found a genomics enterprise, nearly everything in his thinking was unproven or controversial. At the time, the causes of some rare diseases - often variations in single genes that could be found by studying small families - were beginning to be uncovered. Yet it was far from universally accepted that there was any significant genetic component to common/complex diseases like heart disease or type 2 diabetes with well-known behavioral and environmental risk factors; nor, even if there were, whether such variations could be found given the rudimentary technology for reading DNA.
Stefansson was convinced that these existed and could be identified, but only by working at 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 short, this required a population, with people willing to take part in research, a modern healthcare system with meaningful numbers of cases of most common diseases, and much genealogical data. Iceland, Stefansson's native country, with 270,000 people at the time, fit this description better than any other.
In 1996, funded by $12 million in American 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 Swiss pharmaceutical company Roche; 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 - the Iceland Health Sector Database (or IHD for short) - containing copies of medical records from across the country'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. The parliament shortly thereafter granted deCODE the right to create this database after the company made a successful bid to do so. Widely supported by the public and parliament, the IHD's openly commercial aims, and proposed inclusion of medical records data unless individuals opted out, unleashed vehement opposition played out in the local and international media, led by a group of Icelandic activists as well as a number of foreign bioethicists. Although the IHD 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.
By the time Bill Clinton and Tony Blair announced the completion of the first rough draft of the human genome sequence in June 2000, deCODE was busily scaling up its gene-hunting in dozens of diseases and publishing its first discoveries. The company used the most scalable DNA-reading technology of the time - microsatellite genotyping - to place and measure highly variable and therefore informative markers at hundreds of points along the genome. Analyzed in tandem with the genealogies, this made it possible to home in on regions of specific chromosomes that people with a given disease tended to have inherited from their common ancestors. Harbored within these regions, the thinking went, were genes or sequence variants associated with disease that could subsequently be found using finer-definition methods and tools.
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DeCODE genetics
deCODE genetics (Icelandic: Íslensk erfðagreining) is a biopharmaceutical company based in Reykjavík, Iceland. 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."
As of 2019, more than two-thirds of the adult population of Iceland was participating in the company's research efforts, and this "population approach" serves as a model for large-scale precision medicine and national genome projects around the world. deCODE is probably best known for its discoveries in human genetics, published in major scientific journals and widely reported in the international media. But it has also 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.
Since 2012, it has been an independent subsidiary of Amgen and its capabilities and discoveries have been used directly in the discovery and development of novel drugs. This example has helped to spur investment in genomics and precision therapeutics by other pharmaceutical and biotechnology companies.
In 1996, when Stefansson left a tenured position at Harvard Medical School to return to Iceland to found a genomics enterprise, nearly everything in his thinking was unproven or controversial. At the time, the causes of some rare diseases - often variations in single genes that could be found by studying small families - were beginning to be uncovered. Yet it was far from universally accepted that there was any significant genetic component to common/complex diseases like heart disease or type 2 diabetes with well-known behavioral and environmental risk factors; nor, even if there were, whether such variations could be found given the rudimentary technology for reading DNA.
Stefansson was convinced that these existed and could be identified, but only by working at 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 short, this required a population, with people willing to take part in research, a modern healthcare system with meaningful numbers of cases of most common diseases, and much genealogical data. Iceland, Stefansson's native country, with 270,000 people at the time, fit this description better than any other.
In 1996, funded by $12 million in American 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 Swiss pharmaceutical company Roche; 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 - the Iceland Health Sector Database (or IHD for short) - containing copies of medical records from across the country'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. The parliament shortly thereafter granted deCODE the right to create this database after the company made a successful bid to do so. Widely supported by the public and parliament, the IHD's openly commercial aims, and proposed inclusion of medical records data unless individuals opted out, unleashed vehement opposition played out in the local and international media, led by a group of Icelandic activists as well as a number of foreign bioethicists. Although the IHD 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.
By the time Bill Clinton and Tony Blair announced the completion of the first rough draft of the human genome sequence in June 2000, deCODE was busily scaling up its gene-hunting in dozens of diseases and publishing its first discoveries. The company used the most scalable DNA-reading technology of the time - microsatellite genotyping - to place and measure highly variable and therefore informative markers at hundreds of points along the genome. Analyzed in tandem with the genealogies, this made it possible to home in on regions of specific chromosomes that people with a given disease tended to have inherited from their common ancestors. Harbored within these regions, the thinking went, were genes or sequence variants associated with disease that could subsequently be found using finer-definition methods and tools.