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Another piece on Mike from RPI:
PRESS RELEASE March 15, 2000
deCODE Genetics is Bad Business for Commercial Genomics in Iceland, says Rensselaer Ethicist and Professor
TROY, N.Y. -- deCODE Genetics, the company licensed to create a nationwide healthcare database in Iceland, recently filed for an IPO with the Security and Exchange Commission earlier this week, making the genes of the people of Iceland a publicly traded commodity.
This is bad business, says Mike Fortun, an ethicist and professor of Science and Technology Studies at Rensselaer Polytechnic Institute in Troy, NY.
"deCODE's been given a 12-year monopoly on this data," says Fortun. "Regardless of what you think of people as genetics resources, monopolies are not the way to go. This company has presumed that everyone consented to be on this database unless they opted out. It's troubling to see the principles of informed consent overturned this easily."
Fortun will be in Iceland from March 10-18 for a public forum on the issue sponsored by Mannvernd, the Association for Ethics in Science and Medicine in Iceland
"What does it mean to have informed consent where biotechnological change is happening at such an astounding rate? No one has any idea what's going to happen in the genomics research race in the next 2-5 years," Fortun says. "Questions of disease, health, and privacy are being renegotiated so quickly. We need to invent better and more democratic processes to deal with this."
Fortun will be interviewing lawyers who have sent letters to the 16,000 people who have opted out of the decode database, offering to represent them. Allegedly, these lawyers are trying to get deCODE to pay these people to opt back into the database. Fortun will also be interviewing a number of psychiatrists, molecular biologists, geneticists, immunologists, and doctors who have all been critical of deCODE's operation from the start.