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Cash-Starved deCODE Is Looking For a Rescuer for Its Biobank

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Science  28 Aug 2009:
Vol. 325, Issue 5944, pp. 1054
DOI: 10.1126/science.325_1054

Human geneticists are keeping a close eye on the health of Iceland's deCODE Genetics. The genomics company announced earlier this month that it has enough cash to keep going for only a few more weeks. If it halts its research efforts, that would bring to an end a remarkably productive run in the search for genes underlying common diseases. The company's troubles are also raising questions about the future of its massive DNA biobank, which contains a wealth of genetic data on the Icelandic population.

deCODE says it is talking to potential academic as well as commercial partners as part of a restructuring. The Wellcome Trust, the giant U.K. biomedical research charity, is said to be in discussions with the company to take over support of the biobank. (Wellcome declined to comment.) But Iceland's data privacy laws and deCODE's agreements with clinicians could preclude transfer of the biobank outside the country.

Dismantling.

deCODE is selling much of its work to focus on genetic testing.

CREDITS: ROBERT GODDYN/UPA PHOTO; (INSET) KAREN KASMAUSKI/SCIENCE FACTION

deCODE and its CEO, geneticist Kári Stefánsson, drew controversy 11 years ago when they struck a deal with the Icelandic government under which the commercial company would mine the health records of all 270,000 Icelanders and link genomic data with medical information (Science, 1 January 1999, p. 13). That plan was later shot down by Iceland's courts for infringing on privacy. In the meantime, the company began building a DNA, genealogical, and medical database by recruiting volunteers—a conventional approach that “has never caused much tension,” says Jon Johannes Jonsson, a medical geneticist at the University of Iceland in Reykjavík who opposed deCODE's earlier proposal. The database now covers about 140,000 people, says deCODE. Geneticists say its combination of large size and detailed genealogical data is probably unique.

The biobank has been a boon for genomewide association studies (GWAS), which scan the entire genome for disease risk markers. Since these studies took off in 2006, deCODE researchers have netted many of the more than 500 markers found for diseases such as diabetes, heart disease, and cancer. “Their research agenda has been fabulous,” says Aravinda Chakravarti of Johns Hopkins University School of Medicine in Baltimore, Maryland.

deCODE's attempts to develop drugs from these findings haven't been a moneymaker, however. The company has been in serious financial trouble since last fall. On 10 August, deCODE announced that it had only $3.8 million in cash left and “sufficient resources to fund operations only into the latter half of the third quarter.” It plans to sell its medicinal chemistry, structural biology, and drug programs and focus on genetic tests.

deCODE spokesperson Edward Farmer says the company is “talking to a whole range of present and potential customers and partners from pharma to biotech to government and academic groups.” Included are “just about all of the big names in human genetics,” Farmer told Science by e-mail.

Some observers hope that a rescue by Wellcome, if it happens, would broaden access to deCODE's data. Although the company has collaborated with many outside groups, it has turned some down, and it does not make its data sets publicly available the way GWAS researchers now funded by Wellcome do.

Adding to the allure, deCODE's data “will become even more valuable,” predicts Jonsson. Gene hunters are now searching for rare risk variants by “deep sequencing” specific regions of DNA, an approach that requires studying families—which deCODE's biobank has in abundance.

A wholesale transfer of the biobank to the United Kingdom is not a sure thing, however. Icelanders' genetic data could be moved to another European Union country, but all personal identifiers would have to be removed or made anonymous, says Sigrún Jóhannesdóttir, director of the Icelandic Data Protection Authority. Another problem would be the use of biological samples and clinical data, which were collected by clinicians at Icelandic hospitals and institutes. Collaborative agreements that are part of deCODE's legal filings—as well as informed consent documents signed by the volunteers—generally state that DNA samples and medical data must be returned to the doctors when deCODE's studies are completed, notes Vilmundur Gudnason, director of the Icelandic Heart Association.

This means that any transfer would require agreements from deCODE's clinical partners and, potentially, modified informed consent agreements. One possible way to avoid such obstacles, some suggest, would be for the company to spin off an academic organization in Iceland with Wellcome Trust support. With deCODE's cash diminishing fast, time is running out to reach an agreement.

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