Pioneering Icelandic Genetics Company Denied Approval for Data-Mining Plan
By Jocelyn Kaiser,
Science
| 06. 20. 2013
deCODE Genetics, the company known for mining the DNA of Iceland's population to find links between genes and diseases, has hit a snag.
As Science reports in this week's print issue, a national agency that oversees data privacy in Iceland has rejected a request from deCODE to allow it to apply computational methods to the country's genealogical records to estimate the genotypes of 280,000 Icelanders who have never agreed to take part in the company's research and link the data to hospital records.
Led by founder and CEO Kári Stefánsson, deCODE set out in 2006 to combine Iceland's extensive genealogical records with genetic data and also health records for all citizens to discover disease genes. After it failed to receive legal approval to use the health records without consent, deCODE instead built a research database using DNA and clinical data for more than 120,000 research volunteers. The company has published a slew of papers in top journals tying specific genetic mutations to risks of diseases, but has also weathered bankruptcy. Last December, Amgen
purchased the company for $415 million...
Related Articles
By Don Sapatkin, Managed Healthcare Executive | 09.20.2024
Gene therapy comes with the expectation that it will “cure” an expanding number of genetic disorders. If you’ve never wondered – and even if you have -- what that word actually means, four Dutch researchers have a surprise in store...
By Heidi Ledford, Nature | 09.17.2024
For most of her life, Genesis Jones’s daily routine revolved around her illness, the painful blood disorder known as sickle-cell disease. Each time she left the house, she ran through a mental checklist: did she have her pain medications...
By Gabby Del Valle, The Baffler | 09.17.2024
IT’S A COMMON STORY, banal, even: a child of privilege, an heir apparent, leaves for college to get a good enough education—and maybe have a little fun—before taking over the family business. But the child, away from the nest for...
By Katie Palmer and Usha Lee McFarling, Stat | 09.03.2024
Photo by Hush Naidoo Jade Photography on Unsplash
Pediatrician Alexandra Epee-Bounya had had enough. In her 20 years caring for children in Boston, she had seen hundreds of kids with suspected urinary tract infections. Each time, she’d turn to a...