30159dna_profileWhy I won’t give a sample of my DNA to Decode Genetics

By Alda |

Last week I posted a picture on our Facebook page of the contents of an envelope I received from the company Decode Genetics, in which they kindly request that I give them a sample of my DNA. I made some glib remark about swabbing the dog, but didn’t really explain the full story.

Basically it is like this: Decode wants 100,000 Icelanders to give them DNA samples to put into their database. 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] and make tons of money selling their findings to pharmaceutical and other medical sector companies. BUT for Decode to be able to do so they also have to have access to our medical records.

In return for our contribution, Decode is offering to give us a t-shirt.

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

/ a moment.

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 began a day or two before their envelope arrived in my mailbox. It 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 have to sign [and all the propaganda about how important this all is for medical research], we are told that someone will 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 because Decode promises that if 100,000 Icelanders give samples, it will donate ISK 200 million to ICE-SAR. The search and rescue team can really use the funds. We 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. Which is why Decode’s manipulation is all the more effective.

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. Which makes them kinda bad people. 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 ISK 2,000?

One comment I saw on Facebook was from a woman who had received her package one day, and the following day at 7 pm 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 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. It all has to happen NOW. And maybe that’s the whole point. Maybe it’s being done with this urgency precisely because Decode doesn’t want people to have to think about it too much.

[…] is this DNA collection, which is conducted in such a big hurry, really about medical research?

Read the full article at: icelandweatherreport.com