![]() She also said it’s important that controversies of deCODE’s history weren’t “swept under the rug. “It very much remains to be seen whether information gleaned from mining genetic databases will lead to improved risk assessments of common complex diseases, let alone to clinical applications,” said Marcy Darnovsky of the Center for Genetics and Society in Berkeley, California. Past controversies include conducting studies with educational data and genealogical records of subjects without their consent, and going to court in 2003 for using medical data while operating under “ presumed consent.” “We’re also involving the university’s institute of ethics, because we really want to do this the right way.”ĭespite advances, critics remain suspicious of deCODE’s efforts, and doubtful about how many of its discoveries will lead to new treatments. “We and the Icelandic Medical School and the Ministry of Health, have been discussing how to use the data in the best way,” said Kári. Kari Stefansson MD, PhD is a founder and CEO of the Icelandic biotechnology company deCODE genetics. So far, Iceland has resisted using deCODE’s genetic data like this and last year there was even some backlash when deCODE held a campaign to collect DNA samples from 100.000 Icelanders in exchange for t-shirts.Īlthough safeguards were built into the collection of data to guarantee that all the information would be encrypted and kept anonymous, with no information on potential disease risks fed back to patients, this could now change.ĭeCODE would not decrypt the data they have collected but pass it along to the Icelandic healthcare system who would then de-anonymise it and alert Icelanders of potential genetic health risks – provided they wished to know. We’re in a position to teach the rest of the world how to handle these opportunities.” “Currently, our information is used solely to make discoveries, but now we’re in the position to use it to improve health,” Kári told New Scientist. Kari Stefansson Show authors Nature Genetics 47, 435444 ( 2015) Cite this article 55k Accesses 498 Citations 467 Altmetric Metrics Abstract Here we describe the insights gained from. “At the push of a button, we could find all the women with mutations in the BRCA2 breast cancer gene.”Īmong the new insights from the latest research are a new gene linked with Alzheimer’s disease and Kári’s belief that deCODE has now accumulated so much data about Icelanders that it is time to debate how this might be used to identify people at risk of developing genetic disease.įor example, women with the BRCA genes could be forewarned of their increased risk of breast and ovarian cancer. ![]() “We have insights into all living, and some dead, Icelanders,” said Kári Stefánsson of deCODE Genetics, as he presented the company’s latest research from its epic national sequencing programme this week. DeCODE Genetics have collected enough genetic material to warn Icelanders of genetic health risks, reports the New Scientist, but privacy concerns remain.
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