April 2000

GENETIC DECODING :
Monopolizing Genetic Data

deCODE Genetics, the company licensed to create a nationwide health-care database in Iceland, allegedly paid the Icelandic government $200 million to gain a 12-year monopoly on the country’s genetic data, according to Mike Fortun, an ethicist and assistant professor of science and technology studies at Rensselaer Polytechnic Institute. The story was recently covered in Wired.com and Business Week.

“I heard many stories from very reputable sources that imply payments by decode have been made to the Icelandic government and to various political parties in exchange for the legislation, license, and monopoly agreement, for decode’s database,” said Fortun, who was in Iceland March 10-18 for a public forum sponsored by Mannvernd, an association for ethics in science and medicine in Iceland. “It appears that some direct payments have been made between the company and the conservative and progressive parties in Iceland,” Fortun says.

Fortun, who interviewed lawyers, psychiatrists, molecular biologists, geneticists, immunologists, and doctors in Iceland, says a monopoly like the one given to decode is “bad business” for the country and for many other nations developing commercial genomics. “Iceland is like many other countries trying to develop this sector of genomics. But decode’s methods seem to be troubling and nondemocratic,” he said.

“There are many difficult issues here—privacy, informed consent, and even if people should own their own genes,” Fortun said. “Computer ethics get tangled with biomedical ethics—all Icelanders were presumed to consent to be in the database, and now have to ‘opt out.’ It’s a very complex set of issues, and the scientists and physicians with Mannvernd are working hard to both preserve and reinvent research ethics. But one thing is clear to me—monopolies are not the way to go.”

CONTACT: Theresa Bourgeois, (518) 276-2840, bourgt@rpi.edu

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