From: Kathryn Aegis (aegis@igc.apc.org)
Date: Tue Jan 12 1999 - 08:09:01 MST
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
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