Genomic Controversy in Iceland: Déja Vu All Over Again
Earlier this month, a blog post by the Icelandic journalist Alda Sigmundsdóttir caught my eye, thanks to a search engine. It was headlined:
Why I won’t give a sample of my DNA to DeCODE Genetics
My first reaction was that the searching spiders had turned up another ancient tale as if it were new. DeCODE genetics was founded in 1996, with the controversial goal of turning the entire population of Iceland into a massive genetic database, which would be linked to everyone’s medical records, and genealogical information. From this, the company would identify genes for medical conditions and turn an enormous profit. (The 2008 book Promising Genomics covers the story; it “investigates how deCODE Genetics…became one of the wealthiest companies of its kind, as well as one of the most scandalous.”)
It was a grand and ambitious scheme. Iceland’s population (about 280,000 in 2000) is assumed to be generally homogeneous, which seemed likely to help isolate the alleles related to disease, according to the theory of the time. And Iceland has a national health service, administered by the Department of Welfare, with no competing private hospitals. It also has extensive genealogical records, and DeCODE supplied the funds to turn them into a database.
There was quite the boom. The government passed legislation in 1998 setting up the Health Sector Database, and everyone was going to get rich! Except it never actually happened as originally planned. (See “Genome and Nation” [pdf] by UC Berkeley Professor in Bioethics and Society and CGS Advisory Board member David Winickoff.) The national and international controversy became intense; many people saw this as private exploitation of a public good, and there was increasing awareness about the issues of privacy and consent. In 2003, the Icelandic Supreme Court ruled that the company needed to get consent from individuals — not just the government — in order to access their health records.
The collapse of the dot-com boom in 2000–2002 didn’t help; the whole biotech sector suffered, not to mention that a lot of small investors lost their shirts. On top of all this, the science was not working quite as expected. The company did in fact identify a lot of genes as at least partially connected with various conditions. But it never managed to find genomic data specific enough to develop blockbuster treatments. Not surprisingly, therefore, the profit part turned out to be rather hard to achieve. In fact, the company burned through more than half a billion dollars before finally going bust in 2009.
But now DeCODE is baaaack.
For driven entrepreneurs such as DeCODE's Kári Stefánsson, bankruptcy is apparently only a step in the direction of success. Some rather slick machinations resulted in Amgen owning DeCODE, while a spin-off called — cleverly — NextCode aimed to "market diagnoses based on Decode research to doctors and hospitals in the USA.”
And now the next act: This year, DeCODE began going door to door in Iceland collecting DNA samples and consent forms. And they’ll give you a T-shirt in exchange.
Evidently, the company had less than a third of the population in its database when it went bust, and they want the rest. So they have hired the nation’s official search and rescue team (ICE-SAR), for less than $20 a sample, to go door to door. Sigmundsdóttir does not wish them luck:
Predictably there has been a major furore over all this here in Iceland. A group of academics and experts, including the head of the Centre for Ethics at the University of Iceland, have harshly criticized the collection and the way it is being executed. For me personally, the ICE-SAR involvement is the most distasteful element of the whole thing. I resent being manipulated like that, and resent that a wonderful organization like ICE-SAR is being abused in such a manner. Like many others I plan to bin the package from Kári and personally donate ISK 2,000 [about $18] to ICE-SAR, in lieu of the funds that Kári, Hannes and co. would have donated on my behalf.
Previously on Biopolitical Times: