Genomes for Sale

The governing body’s rationale behind the move, for the inclusion of genetic data, was that it might make possible the identification of genetic traits and inherited diseases of Icelandic citizens. The government has touted the national economic benefits to be gained from the partnership with the private enterprise. However Oksana Hlodan points out, “De CODE pays the government an annual license fee, this only covers the costs of the database and administration fees. Which is only a fraction of the outlay to compile the data in the first place.” What they also failed t

One may ask why and what puts the Icelandic genome on the proverbial hot plate? There are multiple reasons. Iceland’s population is relatively small, about 275,000 people. Genealogy is an integral part of the culture, 80% of all Icelandic people who have ever lived in Iceland and abroad can be traced on family trees. Stefansson himself can trace his ancestry back to the year 1000 C.E. The extensive record keeping, Iceland’s isolated geography, and minimal migration from other countries, have enabled Iceland to boast the purest bloodlines of any first world country. Gary Taubes explains, “There are advantages in having this data when studying DNA, along with advances in biotech and computing, you could simply take a few hundred or a thousand victims of disease, analyze their DNA, compare it to the healthy individuals and identify the salient differences.”

Critics of deCODE have attacked it on several fronts. First and foremost it is charging the company with misleading the Icelandic community. They have played on the strong sense of Icelandic patriotism and national self-interest, when the company is incorporated and almost exclusively backed by U.S. investors. Harvard University geneticist Richard Lewontin writes in the New York Times, “The Icelandic parliament has enabled deCODE to convert the health and genetic status of the entire population into a tool, for the profit of a single enterprise.”

Hlodan, Oksana. “For Sale: Iceland’s Genetic History.” June 2002. 3 February 2003.

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