Icelandic Culture: The Icelandic Genome’s Impact on Medicine, Privacy Issues (Listen)

We’ve had a great time covering Iceland Airwaves and discovering and reporting on Icelandic culture. Here’s an Icelandic cultural interview culled from our time there. Be sure to stay tuned for our final radio documentary, which will air on WCRX-FM 88.1. Visit our Iceland Airwaves blog to read/hear more from our time in Iceland. 

Mutations in your DNA can impact your health in all sorts of ways. Among other things, they can increase your likelihood of developing heart disease, cancer and diabetes. The researchers who develop treatments for these diseases locate these mutations and figure out which diseases they’re connected to, and many of them consider the Icelandic DNA to be a goldmine for this type of research.

Arnar Palsson teaches human genetics at the University of Iceland. He says there’s a very specific reason why Icelandic DNA is more suitable for this type of genetic research…

 

Icelanders have such similar DNA because just over 300,000 people live on the island, and not many people have immigrated there over the years. A vast majority of them are direct descendants of the original Nordic settlers who first arrived over a thousand years ago.

So, Palsson says Icelanders have a great idea of who their ancestors were going back generations, and that makes it much easier for researchers to study their genetic history…

In 1998, a genetics company in Reykjavìk called deCODE started collecting DNA samples for a national database that had been created by the Icelandic Parliament It wasn’t mandatory to be a part of the database. You could opt-out if you wanted to, but unless you did, there was assumed consent you wanted your DNA stored. Many Icelanders have had an issue with deCODE because they think they’re violating peoples’ privacy.

 Palsson worked at deCODE from 2006-2007…

deCODE said the information was encrypted, so it couldn’t know who’s information was whose. But in 2003, the Icelandic Supreme Court effectively shut down the database in a case called Gudmunstdottir v. Iceland.

 Ragnar Aðalsteinsson was Gudmunstdottir’s attorney…

 

The ruling killed the “assumed consent” policy, and Aðalsteinsson says now deCODE has to have people sign a consent form BEFORE it can get any samples.

So the “assumed consent” policy and the national database are dead now, but deCODE’s still storing and researching DNA that has been consciously donated by Icelanders.

As genetic research continues in labs all around the world, Palsson says he thinks some day, somewhere, people’s privacy concerns will be justified…

Just like how governments around the world have been trying to prevent the next Wikileaks from happen, it appears that genetics companies may have to do the same.

 

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