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

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.

Now let us digress for a moment, and take a wee look at Decode. It burst onto the scene in the 1990s, all through the efforts of one man, Kári Stefánsson, a MD who had the brilliant idea of turning the Icelandic nation into one big genome database. Everyone thought this was a fabulous idea, and Kári quickly got the backing of the Icelandic government. Before you could say sellmygenestothehighestbidder Decode had access to all Icelanders’ medical records. Yes they did. It was by default. Anyone 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. 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. Kári’s salary remained one of the highest in Iceland, while those who had bought stock in his company were left practically destitute.

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

A few years ago Decode declared bankruptcy. Enter the US genome company Amgen, which swept in and scooped up Decode, putting still more money into Kári Stefánsson’s pocket. Only, the sale of Decode to Amgen 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.’” Hm. 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 or not to take part.

Which brings us to a question: is this DNA collection, which is conducted in such a big hurry, really about medical research? Or might it have something to do with shareholders and stock prices? Because I am guessing that the DNA of 100,000 Icelanders is a fairly valuable commodity, and quite a coup if Decode Amgen manages to get its hands on it. I have no doubt that it will produce a sharp increase in share prices, if nothing else.

One last thing. When Decode swept onto the Icelandic market in the 1990s, one of its chief executives was one Hannes Smárason. He later left the company, only to become infamous in Iceland [and beyond] as one of the chief villains in the Icelandic economic collapse. No one around here trusts him. No one except Kári Stefánsson, that is. Hannes Smárason has recently been appointed CEO of a Decode subsidiary called NextGen, the role of which is to “market diagnoses based on Decode research to doctors and hospitals in the USA”. [Source here]

Yup. That’s the dude who is going to be trading in our DNA and medical records. Except I heard that he couldn’t start work just yet because he has been formally indicted by the Special Prosecutor for a economic crimes leading up to the meltdown.

Predictably there has been a major furore 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. 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 to ICE-SAR, in lieu of the funds that Kári, Hannes and co. would have donated on my behalf.

UPDATE: I’ve made two small amendments to the original post. I initially wrote that Decode would donate ISK 20 million to ICE-SAR, but the correct figure is 200 million. I had also written that Kári Stefánsson had taken millions out of the company and shuffled into his own personal bank account[s], but this is hearsay and not backed up by any concrete evidence. I have therefore removed it.