Decoding Genomic Diversity with deCODE Genetics CEO Kári Stefánsson on “Close to the Edge”

For 25 years, Iceland’s deCODE Genetics has been one of the most powerful and prolific producers and analyzers of human genomic sequence data. Founded by neurologist Kári Stefánsson, deCODE has specialized in using the island’s extraordinary genealogical history and working with its citizens and universal healthcare system to uncover sequence variants associated with rare and common diseases.

In the 2000s, deCODE expanded operations, moving into drug development and even launching a direct-to-consumer genetics business. But amidst a recession that hit Iceland particularly hard, deCODE declared bankruptcy in 2009. After restructuring, deCODE was acquired by Amgen in 2012 for a reported $415 million. It continues to operate with a scientific independence under the watchful eye of Stefansson. deCODE’s genomic prowess was on display in July 2022, when Stefansson and his colleagues published a major study on the whole-genome sequencing of more than 150,000 volunteers in the UK Biobank (UKB) in Nature.

In this special episode of Close to the Edge, correspondent Malorye Branca interviews Stefánsson on the implications of that landmark biobank study, deCODE’s relationship with Amgen, his views on deCODE’s legacy and the future study of human genetic diversity.