Published May 9, 2014
I was flipping through Fréttablaðið on Wednesday morning when a particular article plus two full-page ads caught my eye. ‘This is crazy!’ I thought, as I read the headline, “Collecting DNA Samples From 100,000 Participants In deCODE Research.”
Like Jehovah’s Witnesses, Iceland’s search and rescue team Landsbjörg will soon begin walking door-to-door to win you over to their cause. Only they won’t be doing God’s bidding or even preaching their own gospel. They will be working for deCODE Genetics, a subsidiary of the biotechnology giant Amgen, and their evangelical mission is to collect DNA samples from roughly one-third of the nation. For this task, Landsbjörg will be deploying a small army of 5,000 to 10,000 volunteers who will, according to the article, receive 2,000 ISK (roughly 20 USD) for each person they can get to hand over a pouch containing their DNA.
For those unfamiliar with deCODE, the company uses Iceland’s relatively small and homogeneous gene pool (remember the “anti-incest app” that made headlines last year?) to research genetic risk factors for diseases, for instance, but not everyone agrees that the potential benefits outweigh the risks. For instance, there’s always the danger that this information could fall into the wrong hands, and there are all kinds of unethical ways that the information could be used.
The newspaper ad for the campaign features photos of Icelanders—such as the dean of Iceland’s medical school, the nation’s minister of health and Reykjavík’s mayor, Jón Gnarr—posing with DNA receptacles. “The rescue team will be paying you a visit in the near future,” the deCODE endorsement states. “Give them a warm welcome and have your envelopes ready if you choose to participate.”
While this is undoubtedly clever, it’s also devious if you believe that participation in research should be voluntary and free from any coercion. And it’s surprising that Iceland’s Bioethics Committee would allow it. (Didn’t anybody read that big Special Investigation Commission report which cited an absense of regulatory committee oversight and cheerleading in the universities and the press as some of the reasons for the economic crash in 2008?)
Unlike Jehovah’s Witnesses, Landsbjörg is up there with some of society’s most trusted institutions. After all, they’re the ones who voluntarily go out looking for lost people and make miraculous rescues. When a member of the search and rescue team shows up at your door to collect your DNA, your decision is not only about participating in the research, but also about supporting (or not supporting) search and rescue efforts.
Incidentally, I received a DNA request in the mail not too long ago, and decided not to return the “Buccal DNA transport pouch,” as appealing as it was to get a deCODE workout T-shirt as a ‘Thank-you’ gift. For starters, giving my DNA to deCODE means that I am effectively giving my parent’s DNA too, and it’s quite possible that one or both of them would prefer not to share this information. In fact, deCODE has used DNA information of relatives to impute genetic information onto Icelanders who never consented to be part of such studies.
Who knows what they might do with it, right? In marked departure from their typical research into diseases and disorders, deCODE recently began looking into whether artistic creativity is hereditary and if it can be linked to mental illnesses such as schizophrenia and manic depression. To that end, deCODE CEO Kári Stefánsson has been sending personal letters to members of Iceland’s art community asking them to send him their DNA.
Unlike Kári, the man on our cover this issue—i8 Gallery Director Börkur Arnarson—says he’s not sure that the tremendous creative output coming out of Iceland is due to a creative gene. He does, however, have a lot to say about the arts after running Iceland’s foremost independent gallery for the last 20 years. Turn to page 19 to read our interview with him (or click on this link!).