Iceland's DNA for Sale

Kathryn Aegis (aegis@igc.apc.org)
Tue, 12 Jan 1999 07:09:01 -0800 (PST)

As reported in the Washington Post today, Icelands' government has agreed to a potential deal with Roche Holding AG and other pharmaceutical companies and researchers to utilize a central database of their citizen's DNA. Because of geographical and historical factors, Iceland has maintained a genetic uniformity that would allow for easier gene prospecting. Many Icelandic politicians view this as a way of cultivating a new national resource to alleviate economic problems of high unemployment and scarce natural resources.

Kari Stefansson, CEO of deCODE Genetics proposed the plan and would hold a 12-month monopoly on data marketing rights. He proposes that individual identification data would not be removed from the DNA coding within the database, but rather heavily encoded to maintain privacy. Individuals have a period of time in which to ' opt out', and after that all of their medical information would be recorded in the database after blood is drawn.

As you can imagine, this has precipitated a complex public policy debate, with several ethics and privacy groups raising significant objections about the structure of the database. A government committee has been established to hash out these issues. This will definitely be a story to follow in the next year.

Kathryn Aegis