An interview with Kari Stefansson, who founded deCODE genetics in Iceland and thinks he knows the secret of how to find disease-causing genes. The controversial project, which faces Icelandic court challenges but has completed a successful $244 million IPO, is creating a “phenotype database” of the Icelandic population by correlating a
collection of the health records of all 280,000 Icelanders with Iceland’s extensive public genealogy records to “find
disease-causing genes, aided by the relatively homogenous genetics of Iceland’s population”. Discovered genes would be turned into drug targets. Stefansson:

“The database has been controversial mostly for the wrong reasons. There are
all kinds of reasons to be skeptical of collection of personal information, and I think that we can
never be too careful when we do that. But most of the controversy was focused on
misinformation, the insistence that we were working on biological samples without informed
consent and things of that sort.”

He feels that majority approval, rather than unanimous informed consent, is sufficient to proceed with the project. Public sentiment in Iceland ran around 3:1 in favor when polled, and the endeavor was authorized by an act of the Icelandic parliament. Here’s further coverage of the controversy about this and similar projects that are being done in other populations. Harvard’s geneticist and resident gadfly Richard Lewontin typifies these endeavors as conversions of “the health
and genetic status of the entire population into a tool for the profit of a single enterprise.” MIT Technology Review [thanks, higgy]