This Company Wants to Collect DNA From One-Third of Iceland’s Population

What's to come?
May 21 2014 3:23 PM

Privacy on Ice

This company wants to collect DNA from one-third of Iceland’s population.

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One comment I saw on Facebook was from a woman who had received her package one day, and the following day at 7 p.m., the ICE-SAR member was on her doorstep to collect the sample. Which brings me to another thing: the urgency with which this whole thing is being conducted. Bam—you get the package, then the next day someone is there asking for the sample. No time for contemplation or making an informed decision. Maybe it’s being done with this urgency precisely because Decode doesn’t want people to have to think about it too much.

Decode said in its statement:

The studies that the scientists at deCODE are conducting today and the effort was meant to fortify are of exactly the same nature as the studies they have been doing for the past 15 years. These studies have probably been discussed and debated more in Iceland than any scientific studies in any other society in the world. Hence, it is stretching it to claim that when the effort was launched that the Icelandic society was entirely unfamiliar with the science that people were invited to participate in. It is true that in some instances during the first day of the effort the volunteers knocked on people’s doors earlier than desirable although they were carefully instructed not to ask people to make up their mind, only to ask them whether they already had done so. This happened because the mail service we used did not deliver the envelopes in time.
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Decode burst onto the scene in the 1990s, all through the efforts of one man, Kári Stefánsson, a doctor who had the brilliant idea of turning the Icelandic nation into one big genome database. Stefánsson quickly got the backing of the Icelandic government. Before you could say sellmygenestothehighestbidder, Decode had access to all Icelanders’ medical records. People who objected had to opt out. The onus was on them to do so.

I opted out.

At this time there was a massive amount of hype around Decode, and the public was urged to buy shares in the company because they were going to be huge. Banks were practically throwing loans at people so they could buy shares in Decode. And lots of people did. Lots of people also invested all their savings in Decode shares. Then came the dot-com bust, and those shares fell like a lead balloon.

In the years since then, there have been bits of news every now and again about some imminent Big Breakthrough at Decode. Then, a few months ago, current affairs program Kastljós did an interview with Stefánsson in which they asked him what all those imminent breakthroughs had actually produced. Stefánsson stuttered and couldn’t answer the question. Because, as it turns out, there has been hardly anything.

Decode disputes this in its statement, saying that it has published “approximately 400 scientific papers in the best of journals since it was founded.”

A few years ago Decode filed for bankruptcy. Its assets were scooped up by an investment consortium called Saga Investments. The sale was a tad controversial. One of the things that characterized it, according to this report, was “the aggressive sale timeline that appeared designed to ‘inhibit potential bidders from gathering enough information to become comfortable with submitting a competing bid.’ ” Sounds an awful lot like the DNA collection happening right now, which inhibits potential participants from gathering enough information about the collection to make an informed decision about whether to take part. In 2012, Decode Genetics was sold to U.S. biotech giant Amgen, which ponied up $415 million to help boost its floundering operations.

Predictably, there has been a major furor 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. (Decode, for its part, says, “The only way in which we, and our children, will have good medicines tomorrow is that people participate in such research today.”)

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 $17) to ICE-SAR, in lieu of the funds that Decode would have donated on my behalf.

This article is part of Future Tense, a collaboration among Arizona State University, the New America Foundation, and Slate. Future Tense explores the ways emerging technologies affect society, policy, and culture. To read more, visit the Future Tense blog and the Future Tense home page. You can also follow us on Twitter.

Alda Sigmundsdóttir is a writer and journalist based in Reykjavík. She posts the occasional rant on her blog. Follow her on Twitter