NEW ORLEANS (AP) — Within weeks, an Icelandic company plans to begin collecting DNA samples from Iceland's 270,000 citizens and linking the genetic profiles with their health records and family trees.
The database it plans to build would offer an unprecedented chance to discover genetic links to disease — and an unprecedented danger to privacy, doctors and researchers attending a packed meeting of the American Society of Hematology said Sunday.
Although people's genetic profiles, health histories and family trees will be linked, their identities will be encrypted by clinics and hospitals before the information reaches the company, said Dr. Kari Stefansson, founder and CEO of Decode Genetics, the Reykyavik company that will develop the database.
Still, a security break could leaves people's potential for medical problems — a 70 percent chance of cancer or a 35 percent chance of diabetes, for example — in the hands of insurance companies or potential employers, Dr. David Haile of the University of Texas Health Sciences Center said afterward.
"If information ever leaks out, people will sell it," said Haile, one of the thousands of physicians and researchers in the audience.
And there are other human rights issues that need to be worked out, said George Annas, chairman of the department of health law at Boston University. Among them: how to make sure people understand how their DNA is being used, how to protect the privacy of samples and data, and determining who owns DNA.
"This is the time when we really have to wrestle with this to make plans, not only in Iceland but the whole world," said Dr. Francis S. Collins, who moderated the session and directs the international Human Genome Project, which is trying to map human DNA.
"Next spring, we will have a working draft of 90 percent of the human sequence on the Internet — four or five years before anyone expected," he said.
Iceland is an ideal site for using DNA to track genetic links to disease.
Relatively few outsiders have moved in over the 1,000 years since Vikings settled the island, and the nation has extensive health records and family trees, some dating back 500 years.
Iceland passed a law last December allowing Decode Genetics to move ahead with its DNA database project.
The country's government has been working with the company on regulations since then, and Stefansson said in an interview that he expects to begin taking blood samples and developing the database within weeks.
Once the database is complete, the company plans to use computer programs to search for patterns. Decode Genetics has rights to the market database for 12 years. It plans to sell information to pharmaceutical companies and researchers.
Icelanders will be allowed to take themselves out of the database.
Stefansson said he expects it to take three years to complete the database programming, but much less time to get usable information. "I think we will begin to market it pretty soon," he said.
Even without the database, Iceland's homogeneity is a major asset for Decode. It was a major reason that the Roche healthcare group signed a contract that could be worth more than $200 million to look for genes that cause 12 common diseases.
The contract was signed in February 1998; 13 months later, the two companies announced that they were "closing in on" a site of a gene that causes osteoarthritis.
As part of the contract, The Roche Group will give Iceland any drugs it develops as a result of the research.
