Slicing Up Iceland's Gene Pie

Martin is a contributing news editor and writer based in Amsterdam

For almost 2 years, Iceland's small scientific and medical community has been torn apart by a bold plan: a database of the entire country's medical records that would aid the search for disease-causing genes. Now, a small biotech start-up is providing an alternative for those critics who want to mine Iceland's genetic riches but do not want to cooperate with the company that has exclusive rights to the database.

Many scientists believe that disease-causing mutations are easier to find in genetically homogenous populations, such as Iceland's, whose genomes have less "noise" than those of more diverse societies. Companies that uncover such mutations can profit by selling that knowledge to pharmaceutical companies, which can use it to develop diagnostic tests and drugs. In December 1998, the Icelandic parliament approved the creation of the national health database (Science, 1 January 1999, p. 13), and last month the health ministry put one company, called deCODE, in charge--a move that engendered heated opposition. Critics have argued that deCODE's procedures for obtaining patients' informed consent and safeguarding their privacy are inadequate.

Now a second company, called UVS--after Urdur, Verdandi, and Skuld, three witches who according to old Icelandic sagas determine human fate--will compete with deCODE. UVS says it can turn up valuable data by working with smaller groups of patients, who have volunteered to participate. Founded 2 years ago, UVS went public last week and promptly announced three major research agreements--with the Icelandic Cancer Society, the National University Hospital, and the Reykjavik City Hospital. Within 6 to 8 weeks, UVS plans to open a lab outside Reykjavik, says Snorri Thorgeirsson of the U.S. National Cancer Institute in Bethesda, Maryland, and one of the company's founders.

Kari Stefansson, founder and CEO of deCODE, is unfazed by the competition. The Icelandic government, keen to stimulate its budding biotech industry, has embraced deCODE's plan. Nor, says Stefansson, does deCODE have a shortage of collaborators. The company, which employs almost 300 people, is working with many physicians on projects to identify genes involved in lung, prostate, stomach, colon, and skin cancer. Says Stefansson: "For me, it's a relief to have another company, so I'm not accused of monopolizing" Iceland's gene pool.

Posted in Biology