ICELAND: DNA Research Raises Privacy Issues
Decode Genetics, an Icelandic company, will begin collecting DNA samples from Iceland's 270,000 citizens this month to build a database that will link genetic profiles with health records and family trees. Iceland passed a law last December allowing Decode Genetics to undertake the research project. Researchers deemed Iceland an "ideal site" for tracking genetic links to disease because relatively few outsiders have moved to the island in the 1,000 years since Vikings settled there. Also, the nation has extensive health records and family trees, the AP/New Orleans Times-Picayune reports. The database is slated to be completed within three years and the company has the rights to market it for 12 years. Icelanders are allowed to take themselves out of the database. Some experts said that the Decode Genetics project poses "an unprecedented danger to privacy." Dr. Kari Stefansson, Decode Genetic's founder and CEO, said participants' identities will be encrypted by clinics and hospitals before the information reaches the company. But if a security break were to occur, critics argue, insurance companies or potential employers could discover citizens' propensity for medical problems. Dr. David Haile of the University of Texas Health Sciences Center, who participated in a meeting of the American Society of Hematology on Sunday, said, "If information ever leaks out, people will sell it." George Annas, chair of the department of health law at Boston University, said several human rights issues still need to be worked out, including how to ensure that Icelanders understand how their DNA will be used and how to protect the privacy of samples and data. Dr. Francis Collins, director of the international Human Genome Project, added, "This is the time when we really have to wrestle with this to make plans, not only in Iceland but in the whole world." The Roche Group also is trying to capitalize on Iceland's homogeneity and has signed a contract that could be worth more than $200 million to look for genes which cause 12 common diseases. As part of the deal, Roche will give Iceland any drugs it develops as part of the research (McConnaughey, 12/7).This is part of the California Healthline Daily Edition, a summary of health policy coverage from major news organizations. Sign up for an email subscription.