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 Darren Incorvaia, Fierce Biotech | 07.16.2026
Jennifer Doudna, Ph.D., the Nobel Laureate best known for co-inventing the CRISPR system that has become the foundation for gene editing, is dipping her toes into a new, buzzy field: AI-powered protein design.
In a new paper, published today...
By Risa Cromer, The Conversation | 07.17.2026
By Emily Packard Dawson and Lainie Friedman Ross , The Hastings Center for Bioethics | 07.16.2026
Major news outlets recently reported – based on a bioRxiv preprint – that scientists had edited genes in human embryos with “startling precision.” The scientists’ decision to release this work ahead of peer review, coupled with the extensive media coverage...
Media coverage of recent developments in embryo gene editing might seem to suggest that gene-edited babies are close to becoming a reality. As tech billionaires eager to profit off of techno-eugenics invest in “designer baby” technologies, attempts to normalize heritable genome editing – which remains unsafe and raises significant ethical and societal concerns – are especially dangerous. It’s worth taking a closer look at these developments and what they mean, in a way that pushes back on narratives normalizing the...