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Intermountain, deCode Partner on Population Genetics

Kári Stefánsson

Kári Stefánsson (deCode Genetics)

12 June 2019. A health care network in Utah is partnering with a genetic analytics company to find connections between genetics and disease in 500,000 of its members. The HerediGene Population Study is a project joining Intermountain Healthcare in Salt Lake City and deCode Genetics in Reykjavik, Iceland, and announced today at Intermountain.

The HerediGene study is recruiting 500,000 Intermountain Healthcare members in Utah and Idaho to take part. Intermountain is a regional health care system of 24 hospitals, 160 clinics, and some 23,000 clinicians serving the U.S. Mountain West. The network also includes a health insurance company and the Intermountain Biorepository storing some 4.5 million biological samples connected to decades of patient health records.

deCode Genetics, a subsidiary of drug maker Amgen, collects data from 160,000 volunteers in Iceland, more than half the country’s adult population. The company also assembles a genealogical database for the entire country going back 1,000 years to Iceland’s founding as an independent nation. These extensive data sets, combined with the high quality of universal health care in Iceland, says deCode, makes it possible to study most common diseases on a large scale, minimizing the selection bias that can occur in larger and more diverse populations.

The HerediGene study is asking 500,000 Intermountain members to donate blood samples during their regular clinic visits for DNA analysis by deCode Genetics. The samples will be analyzed for disease risk, with participants alerted if any known genetic variations indicating a higher risk of disease appear. Intermountain expects about 3 percent of the reports will show 1 or more of these variations. Intermountain says it will provide counseling and help plan next steps with individuals notified of higher disease risk from the genetic analysis.

Participation in the HerediGene study is free of charge and voluntary, with data provided to deCode Genetics de-identified to maintain participants’ privacy. Intermountain says the study will analyze the entire genome of participants, a much more comprehensive analysis than commercial genetics services that reveal ancestry and selected disease conditions.

Intermountain and deCode Genetics say the HerediGene study is the largest and most comprehensive DNA mapping project to date in the U.S. from a single population. “This unique collaboration,” says Kári Stefánsson, founder and CEO of deCode Genetics in an Amgen statement, “is expected to uncover new insights into some of society’s most debilitating diseases.” He adds, “These potential discoveries will allow deCode and Amgen to rapidly develop new medicines that reach the right disease targets.”

Lincoln Nadauld, chief of precision health at Intermountain notes, “While the 500,000 samples will  be collected primarily from patients in Utah, the research is expected to have a global impact as medications, treatments, and health care innovations that can benefit patients universally are developed from the findings.”

deCode Genetics takes part in collaborations with other companies and institutions. In December 2018, as reported in Science & Enterprise, deCode Genetics and proteomics company SomaLogic Inc. in Boulder, Colorado began an analysis of 40,000 human samples to find links between genetics and protein activity. SomaLogic’s technology provides a snapshot of protein activity in the body in real time, aided by machine learning and bioinformatics.

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