Future Tense

Privacy on Ice

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

Icleand Landscape.
Reykjavik Harbor in 2009.

Photo by Olivier Morin/AFP/Getty Images

A version of this article originally appeared on Alda Sigmundsdóttir’s personal blog.

Recently, I received mail from the company Decode Genetics, kindly requesting that I give a sample of my DNA. I was just one of the approximately 100,000 Icelanders whom Decode is asking for DNA samples to put into its database. (That’s nearly one-third of Iceland’s population of roughly 320,000.) Apparently because the Icelandic population is so homogenous, our DNA contains clues as to what causes specific diseases. Decode wants to study this—indeed, Decode’s entire existence is built around studying this. But first, Decode needs access to our medical records.

In return for our contribution, Decode is offering to give each participant a T-shirt.

Let us just take a moment to contemplate this stellar offer.

Now, maybe giving up my DNA and a large chunk of my privacy is all very altruistic and everything. Maybe it will help find cures for diseases and save lives. Maybe. But unfortunately there are things in this whole DNA-collection shenanigans that I simply cannot accept. Here is why I have decided not to give Decode Genetics a sample of my DNA and access to my medical records—as if the last part wasn’t reason enough.

Decode’s little collection of samples was kind of sprung on everyone, by which I mean hardly introduced at all before the packages were sent out. Along with the package and the forms we had to sign (and all the propaganda about how important this all is for medical research), we were told that someone would come by our house “soon” to pick up the sample.

That “someone” is in fact someone from ICE-SAR, the Icelandic Search and Rescue organization. That’s correct. Decode is using ICE-SAR, one of the most respected and best-loved institutions in Iceland, as couriers. This is because Decode promises that if 100,000 Icelanders give samples, it will donate ISK 200 million (more than $1.7 million) to ICE-SAR. The search and rescue team can really use the funds. We Icelanders know this. We also love ICE-SAR for the amazing work they do and want them to continue doing it without having to beg for donations.

So people who might be having doubts about giving away their DNA and access to medical records are effectively being told that, if they don’t take part, they are doing ICE-SAR—and by extension everyone else who might ever need rescuing—a really bad turn. Picture it: An ICE-SAR member arrives at Jón or Gunna’s home to pick up Decode’s sample, and Jón or Gunna promptly reach for the swab and guiltily provide the sample because the ICE-SAR guy is standing there waiting, and who wants to deprive ICE-SAR of their donations?

Decode said in a statement emailed to Slate:

Over the years we have been convinced by both the National Bioethics Committee and the Data Protectorate to use third parties to approach potential participants in our research rather than doing it ourselves. Hence, we have to choose a third party and the alternative to choosing those who are considered good people to do this would be to choose those who are considered bad people.

Decode also says that it “calculated the cost of using contractors to gather materials from participants and came to conclusion that it would be approximately 2000 Icelandic kronur per person,” which is why that’s the amount being donated. Furthermore, “The T-shirt is not a form of a payment. It is not considered to be acceptable to pay for participation in research like ours.”

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.

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.