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DeCODE genetics
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== As global model == Introducing Stefansson for the organizations at the [[American Society of Human Genetics]] annual meeting in 2017, the [[Broad Institute]]'s [[Mark Daly (scientist)|Mark Daly]] observed that the meeting and the field were dominated by "a pervasive paradigm involving biobanks recruited with full population engagement, historical medical registry data, investments in large-scale genetic data collection and statistical methodology, and collaborative follow-up across academic and industry boundaries...[and] deCODE provided the template for this discovery engine."<ref name=mjd/> From its early days, deCODE's example gave fresh impetus to others hunting for disease genes in isolated communities and small populations in Sardinia, Quebec, Newfoundland, northern Sweden, Finland, and elsewhere. However deCODE was not touting the Icelandic population's "relative homogeneity" in order to find variants causing rare syndromes, but because the existence of founder mutations would help to power discovery of variants impacting common disease.<ref>On role of homogeneity and overall goals, see J Gulcher and K Stefansson, "Population Genomics: Laying the Groundwork for Genetic Disease Modeling and Targeting," ''[https://www.degruyter.com/view/j/cclm.1998.36.issue-8/cclm.1998.089/cclm.1998.089.xml Clinical Chemistry and Laboratory Medicine]'', vol 36, Number 8 (1998)</ref> In terms of its relevance to global medical challenges, Iceland was not an inbred population with a high prevalence of rare syndromes but rather a European society in miniature that could be studied as a whole: not the biggest small population so much as the smallest big one.{{citation needed|date=December 2023}} The first large country to follow deCODE's example was the UK.<ref>British scientist John Bell was particularly prescient regarding the future utility of genomics in healthcare. See John Bell, "The new genetics in clinical practice," ''[https://www.bmj.com/content/316/7131/618 BMJ]'', vol 316, issue 7131 (14 February 1998)</ref> Iceland's experience, behind the scientific and medical value of applying the NHS's vast reach and resources to one of the most diverse populations in the world,<ref>See J Fears and G Poste, "Building population genetics resources using the U.K. NHS''',"''' ''[https://www.science.org/doi/abs/10.1126/science.284.5412.267?rbfvrToken=640c3d9f4519f478745e05fa1278a6e6624f3e3f Science]''''',''' vol 284, issue 5412, pp 267-8 (April 1999)</ref> informed the authorization of the UK Biobank in 2003<ref>Pallab Ghosh, "Will Biobank pay off?," ''[http://news.bbc.co.uk/2/hi/health/3134622.stm BBC]'', 24 September 2003</ref> and then [[Genomics England]] in 2013. Other early, large-scale biobank and genomics efforts linked to major health systems included the [https://www.research.va.gov/mvp/ Million Veterans Program] in the US, launched in 2009;<ref>JM Gaziano ''et al.'', "Million Veteran Program: A mega-biobank to study genetic influences on health and disease," ''[https://www.sciencedirect.com/science/article/pii/S0895435615004448#bib15 Journal of Clinical Epidemiology]'', vol 70, pp 214-223 (February 2016)</ref> the [https://divisionofresearch.kaiserpermanente.org/genetics/rpgeh/rpgehabout Research Program on Genes, Environment and Health] {{Webarchive|url=https://web.archive.org/web/20200320142420/https://divisionofresearch.kaiserpermanente.org/genetics/rpgeh/rpgehabout |date=20 March 2020 }} at California's [[Kaiser Permanente]], begun in 2007; and the [[China Kadoorie Biobank]] in mainland China and Hong Kong begun in the mid-2000s.<ref>{{Cite journal |last=Chen |first=Z. |last2=Chen |first2=J. |last3=Collins |first3=R. |last4=Guo |first4=Y. |last5=Peto |first5=R. |last6=Wu |first6=F. |last7=Li |first7=L. |last8=on behalf of the China Kadoorie Biobank (CKB) collaborative group |date=2011-12-01 |title=China Kadoorie Biobank of 0.5 million people: survey methods, baseline characteristics and long-term follow-up |url=https://academic.oup.com/ije/article-lookup/doi/10.1093/ije/dyr120 |journal=International Journal of Epidemiology |language=en |volume=40 |issue=6 |pages=1652–1666 |doi=10.1093/ije/dyr120 |issn=0300-5771 |pmc=3235021 |pmid=22158673}}</ref> After 2014, when Illumina announced that its new X-Ten system could sequence whole genomes at scale for $1000 each, national genome projects proliferated,<ref>Erika Chek Hayden, "Is the $1,000 genome for real?," ''[https://www.nature.com/news/is-the-1-000-genome-for-real-1.14530 Nature]'', 15 January 2014</ref> from the US ([[All of Us (initiative)|All of Us]], alongside the MVP) and (alongside CKB) to [https://www.health.gov.au/initiatives-and-programs/genomics-health-futures-mission Australia], [https://www.genomecanada.ca/ Canada], [https://www.dha.gov.ae/en/pages/dubaigneomicsabout.aspx Dubai] {{Webarchive|url=https://web.archive.org/web/20190510173244/https://www.dha.gov.ae/en/pages/dubaigneomicsabout.aspx |date=10 May 2019 }}, [[Estonian Genome Project|Estonia]] (originally begun in 2000), [https://www.france-genomique.org/ France], [https://www.scmp.com/news/hong-kong/health-environment/article/2182246/tens-thousands-hong-kong-have-their-dna-sequenced Hong Kong], [https://www.amed.go.jp/en/program/IRUD/ Japan], [http://www.nlgenome.nl/ Netherlands], [https://qatargenome.org.qa/ Qatar], [https://www.bbc.com/news/health-25216135 Saudi Arabia], [https://www.a-star.edu.sg/gis/ Singapore], [https://news.unist.ac.kr/unist-partaking-in-the-launch-of-the-genome-korea-in-ulsan/ South Korea], [https://www.scilifelab.se/infrastructure/national-projects/swedish-genomes-program/ Sweden] {{Webarchive|url=https://web.archive.org/web/20190510173252/https://www.scilifelab.se/infrastructure/national-projects/swedish-genomes-program/ |date=10 May 2019 }}, and [https://www.tuseb.gov.tr/ Turkey], and beyond. Although with varying focuses and approaches, all of these programs were at the least implicitly inspired by deCODE's example.<ref>Catherine Offord, "Learning from Iceland's Model for Genetic Research," ''[https://www.the-scientist.com/bio-business/learning-from-icelands-model-for-genetic-research-31435 The Scientist]'', 31 May 2017</ref> Other large projects led by pharmaceutical companies have closely followed deCODE's model and its work with Amgen. These include [[Regeneron Pharmaceuticals|Regeneron]]'s with the [[Geisinger Health System|Geisinger health system]] in the US,<ref>[https://investor.regeneron.com/news-releases/news-release-details/regeneron-and-geisinger-health-system-announce-major-human Press release], "Regeneron and Geisinger Health System announce major human genetics research collaboration," regeneron.com, 13 January 2014</ref> and [[AstraZeneca|Astra Zeneca]]'s hybrid public/private/academic partnership with the [[Wellcome Trust]] in the UK, Craig Venter's [https://www.humanlongevity.com/ Human Longevity] in California, and [[Finngen]] in Helsinki.<ref>Heidi Ledford, "AstraZeneca launches project to sequence 2 million genomes," ''[https://www.nature.com/news/astrazeneca-launches-project-to-sequence-2-million-genomes-1.19797 Nature]'', 22 April 2016</ref> The latter, founded by Broad Institute leaders and Finnish universities, the health ministry, and biobanks to drive drug discovery,<ref>See, for example, [https://researchportal.helsinki.fi/en/persons/mark-daly Mark Daly's faculty page] as director of the Institute for Molecular Medicine at the University of Helsinki</ref> is remarkably close to deCODE's original vision in Iceland but with academics and government bodies as equity partners in the business. This public-private partnership model may explain the passage of legislation in Finland in 2019 authorizing the near wholesale use of anonymized medical records, social welfare data and biobank samples for biomedical research, which goes well beyond the ambitions of the 1998 IHD legislation that caused so much controversy in Iceland twenty years earlier.<ref>ES Hautamäki and J Lilja, "Secondary use of health data – the new Finnish Act," [https://www.roschier.com/newsroom/secondary-use-of-health-data-the-new-finnish-act/ Insights blog], Roschier.com, 19 November 2019 </ref> {{Anchor|NextCODE Health}}deCODE's direct involvement and lineage is also evident across the field. deCODE is a founding member and leader of the [https://www.nshg-pm.org/ Nordic Society of Human Genetics and Precision Medicine], which brings together the resources of all the Scandinavian countries and Iceland and Estonia to advance gene discovery and the application of precision medicine across the region. In 2013, a group of deCODE alumni created a spinoff, NextCODE Health (now [[WuXi AppTec#Genuity Science|Genuity Science]]), that licensed and further developed informatics and sequence data management tools originally developed in Iceland to support clinical diagnostics and population genomics in other countries.<ref>[https://www.prnewswire.com/news-releases/nextcode-health-launches-operations-with-exclusive-license-to-leverage-decode-genetics-genomics-platform-for-sequence-based-clinical-diagnostics-and-15-million-in-venture-financing-228916071.html Press release], "NextCODE Health Launches Operations with Exclusive License to Leverage deCODE genetics' Genomics Platform for Sequence-Based Clinical Diagnostics, and $15 Million in Venture Financing," ''PRNewswire'', 23 October 2013</ref> Its systems and tools have been used by national genome projects in England,<ref>See Vivien Marx, "DNA of a Nation," ''[https://www.nature.com/articles/524503a Nature]'', vol 524, pp 503–505 (August 2015)</ref> Qatar,<ref>Press release, "Sidra Selects WuXi NextCODE to Power Population Genomics and Precision Medicine in Qatar," ''[https://www.prnewswire.com/news-releases/sidra-selects-wuxi-nextcode-to-power-population-genomics-and-precision-medicine-in-qatar-300154836.html PRNewswire]'', 6 October 2015</ref> Singapore;<ref>Allison Proffitt, "WuXi NextCODE Chosen To Support Singapore Precision Medicine Pilot," [http://www.bio-itworld.com/2017/01/05/wuxi-nextcode-chosen-support-singapore-precision-medicine-pilot.aspx ''BioIT World''], 5 January 2017</ref> pediatric rare disease programs in the UK, US<ref>C Brownstein, ''et al.'', "If I knew then what I know now: The need for infrastructure to enable precision medicine," ''[https://vector.childrenshospital.org/2017/08/precision-medicine-infrastructure-needed/ Vector] {{Webarchive|url=https://web.archive.org/web/20200320142422/https://vector.childrenshospital.org/2017/08/precision-medicine-infrastructure-needed/ |date=20 March 2020 }}'' (Boston Children's Hospital blog), 14 August 2017</ref> and China;<ref>"DNA of a nation," ''op. cit.''; "WuXi NextCode, Fudan Children's Hospital Collaborate on Rare Disease Diagnostics," ''[https://www.genomeweb.com/sequencing-technology/wuxi-nextcode-fudan-childrens-hospital-collaborate-rare-disease-diagnostics#.XmekPRP7R24 Genomeweb]'', 16 September 2015</ref> and at its subsidiary Genomics Medicine Ireland. In 2019, deCODE and US regional health system [[Intermountain Healthcare|Intermountain]] partnered to conduct a 500,000-person WGS-based research and precision medicine study,<ref>"Intermountain, Decode Genetics to Sequence 500K Genomes for Research," ''[https://www.genomeweb.com/business-news/intermountain-decode-genetics-sequence-500k-genomes-research#.Xmbd1xP7R24 Genomeweb]'', 12 June 2019</ref> and deCODE also began sequencing 225,000 participants in the UK Biobank.<ref>Jonathan Smith, "Icelandic Company to Sequence 225,000 Genomes from UK Patients," ''[https://www.labiotech.eu/medical/icelandic-company-to-sequence-225000-genomes-from-uk-patients/ Labiotech]'', 13 September 2019</ref>
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