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.”
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