I have written several times about deCODE Genetics, a company that used the genealogy and medical records of Iceland to find genes that carried inherited medical conditions. Iceland is unique among the world’s populations in that it has a small population (roughly 280,000 people), excellent genealogy records going back for centuries, and excellent medical records of each Icelandic citizen for close to one century. Such a well-documented pool of closely-related people is a geneticist’s delight.

Kari Stefansson’s company, deCODE Genetics, was formed to mine the nation's heredity to find treatments for cancer, Alzheimer's disease, mental illness, and other common afflictions. Then it would sell those cures to pharmaceutical companies in the United States and Europe. deCODE was established with a great amount of hoopla that extended even into small publications, such as this genealogy newsletter. deCODE soon went public, with its stock shooting to $65.00 a share soon after the IPO.

deCODE made several announcements. The first was that the company had mapped a gene for essential tremor, a shaking syndrome that affects 5 percent to 10 percent of those over 65. Later it announced that it had mapped a gene that affects a person's chances of having a stroke. It also said that it had studies in progress to find genes for Alzheimer's disease, schizophrenia, osteoporosis and peripheral arterial occlusive disease, a circulatory disorder.

All was well for a while until a few scientists, doctors, and other concerned individuals started to raise some objections. In short, these people claimed that it was unethical for a private company to use databases containing personal information about individuals for the purpose of creating profits. Opponents argued that the use of the Icelandic database by private corporations violated international conventions on medical research involving human subjects. It would violate the privacy of people with sexually transmitted diseases, mental illness, and other stigmatizing conditions. The information in it could be used to discriminate against people based on their genetics. And the law did not compensate people for giving valuable information about themselves to a profit-making enterprise.

When Iceland's parliament passed a law in December 1998 to give deCODE a license to use the government’s database, it offered a nod to those objections by allowing people to ''opt out'' of the database. Almost 20,000 people, about 7 percent of the population, have excluded themselves so far. But because the dead cannot be excluded by their surviving relatives and there is no way for parents to keep their children out, opponents plan to challenge the law in Icelandic court this spring on the grounds that it violates human rights.

deCODE has had other problems, too. It has suffered from the recent decline in stock prices, as shares now trade in the $9.00 range, a big drop from last summer’s $65.00 a share. Einar Arnason, a respected Icelandic researcher, also claims that deCODE will never discover anything valuable because Stefansson's initial assumption about the genetic homogeneity of Icelanders is false. ''Iceland is actually one of the most heterogeneous European countries,'' he says.

A long and detailed story about the problems of deCODE may be found online at: