Sometimes it takes a crisis or a tragedy to spur a revolution. That’s what has happened in the Faroe Islands.
In the 1990s, deCODE Genetics began the process of creating the world’s first population-wide biobank of genetic information by collecting the DNA of all residents of a confined geographic population. They approached the Faroe Island, which at that time declined, and deCODE went on to proceed with the population of Iceland. Unfortunately, deCODE eventually declared bankruptcy and was recently purchased, but the genomics revolution had begun and continues, ironically, in the Faroe Islands.
In Discovery Magazine’s recent article, “Faroe Island Aim to Sequence Genes of Entire Country,” they detail the plans for sequencing the genes of the entire population of 50,000 Faroe Islanders.
Because of the isolation of the island, in the north Atlantic between Norway and Iceland, the residents have been marrying each other for generations, creating a highly endogamous population. With few new genes being introduced, the existing genes get passed around, and around, and around. This causes a very high incidence of some genetically transmitted diseases, and little known CTD, or carnitine transporter deficiency, is among them.
This genetic timebomb is also what spurred the Faroes to action, after the death of a young man, Edmund Jensen, and his family members, from this genetic mutation.
Termed FarGen, this project is leading the way on many fronts. Questions of ethics, of responsibility, of liability and of privacy will all have to be addressed as this project unfolds, but the project holds the potential for life-changing discoveries on the medical front that will benefit not only Faroe Islanders, but many of the rest of us too.