Few countries can claim that two-thirds of their adult population has volunteered DNA samples for genetic research. In Iceland, this extraordinary participation forms the backbone of deCODE genetics (Íslensk erfðagreining), a company at the centre of some of the most important discoveries in human genetics. Established in Reykjavík in 1996 by Kári Stefánsson, deCODE set out to unravel the genetics of common diseases, leveraging Iceland’s distinctive combination of population history, comprehensive genealogical records and a cooperative public.
Building the world’s most complete national genealogy
Iceland’s recorded history is unusually thorough, stretching from medieval sagas and the 1703 census (the first of its kind anywhere) all the way to today’s national registry. This made it possible for deCODE to construct a national genealogy database, linking living citizens through nearly complete records back centuries. With the help of local software partner Friðrik Skúlason, they built the Íslendingabók, the ‘Book of Icelanders.’ This resource offers almost every Icelander the chance to trace their ancestors, and forms a foundation for connecting genetic data to family heritage, while keeping individual identities encrypted and private for research purposes.
As of February 2017, there were over 221,000 users of the Íslendingabók online service. The creation of this database, combined with Iceland’s relatively small and historically isolated population, allowed researchers to trace disease-related genetic variants with unusual precision. Iceland’s entire adult population was less than 300,000 when deCODE began its work, making a population-wide approach feasible, something few other nations can match.
Science meets society
deCODE’s efforts have not only produced over 400 scientific publications but have also brought attention to the challenges of large-scale health data collection. A major debate erupted in the late 1990s around the company’s proposal for the Iceland Health Sector Database, a research resource containing medical records from the national health service. Broad support from Icelanders and their parliament was met with sharp opposition from activists and ethical critics, highlighting global concerns about privacy and commercial use of personal data. In the end, the Health Sector Database was never built, but the debate propelled deCODE into the spotlight of global genetic science.
Despite controversy, the company continued to grow. After establishing partnerships with international pharmaceutical companies, deCODE was acquired by Amgen in 2012, yet retained its Icelandic management and adherence to national laws. Its work has underpinned new genetic risk tests and helped drive the development of medicines for conditions such as cardiovascular disease and Alzheimer’s.
Much of deCODE’s success relies on an approach that treats genetics not as isolated family trees, but as a tapestry woven through the whole nation. Today, this ‘population approach’ is seen as a model for global efforts in precision medicine, inspiring similar projects around the world. For Icelanders, participation in deCODE’s research has become a collective contribution to the advancement of medical science, rooted in history yet shaping the future.
Sources
- Wikipedia
- Wikipedia (Icelandic) in Icelandic
