Half a million Swedes to fill giant gene bank

[Loppan Torkel]

Scientists are hoping that genetic data gathered from half a million Swedes will help improve our understanding some of the world's most pressing public health problems, Dagens Nyheter reports.

Hundreds of thousands of Swedes will be approached this autumn by the mammoth LifeGene project and asked if they wish to participate in Sweden’s largest ever health-related population study.

I'm a bit reluctant to participate in a project that theoretically will know every disease I'm likely to get. It's another, and pretty large, step to a society with too much control over the individual, even if this is coded.
It's also beneficial to some degree of course.

Would you be willing to participate in a project like this?

Spoiler :

Half a million Swedes to fill giant gene bank
Published: 30 May 10 11:48 CET
Online: http://www.thelocal.se/26932/20100530/

Scientists are hoping that genetic data gathered from half a million Swedes will help improve our understanding some of the world's most pressing public health problems, Dagens Nyheter reports.

Hundreds of thousands of Swedes will be approached this autumn by the mammoth LifeGene project and asked if they wish to participate in Sweden’s largest ever health-related population study.

Leading medical university Karolinska Institutet will host the project, which has secured the approval of the national Ethics Review Board.

Participants will donate blood and urine samples, which are to be frozen and stored in a gigantic underground facility at Karolinska Institutet in Solna, just north of Stockholm. People taking part in the project will also answer general question about their lives and habits as researchers seek to better understand the links between lifestyle, environment, genes, and disease.

LifeGene aims to build up a database of genetic material from half a million people aged 0 to 45. By following the development of participants’ health over a long period, LifeGene will allow researchers at home and abroad to explore the development of diseases such as cancer, diabetes, asthma, and heart illnesses.

All gene data collected for the project is to be coded, and LifeGene has pledged not to release any information that could lead to the identification of participants.

But Jan Wahlström, a professor of clinical genetics at Gothenburg University, has called for more debate on the potential ethical ramifications of the project. Speaking to Dagens Nyheter, he asked:

“Do we want our genes used in a study of markers showing when we’re going to die, for example? And can we be certain that information about the genes won’t fall into the wrong hands in the future?”

LifeGene's operating manager Jens Mattsson countered that the risk of identification was "non-existent".

 

[Abaddon]

I'd love to participate!

 

[Gabryel Karolin]

I was invited into some sort of LifeGene pilot a couple of months ago, no way I would participate.

 

[Abaddon]

I was invited into some sort of LifeGene pilot a couple of months ago, no way I would participate.

Why on earth not?

 

[Gabryel Karolin]

Why on earth not?

Because I'm not comfortable with the government running detailed analyzing of my genetics. Who knows where that information eventually ends up.

 

[really]

Because I'm not comfortable with the government running detailed analyzing of my genetics. Who knows where that information eventually ends up.

Medical companies, pharmaceutical companies etc.

 

[Abaddon]

But so what? What can they do with that? I'd want to further the human endeavour into our genome!

 

[Loppan Torkel]

Medical companies, pharmaceutical companies etc.

..insurance companies, companies that are hiring.. it could become a capitalistic First Reich..

 

[Truronian]

I'd do it, so long as it was covered by the Data Protection Act.

 

[GoodGame]

I'd consider doing it as a scientist, but only for a nationalized project, not a privately run one. And even then, the nationalized project might be sold to a private company like happened with Iceland.

That and the privacy/insurance concerns.

 

[bhsup]

Couldn't you give the genetic data anonymously? Do they need to know who you are for it to be helpful to them, as opposed to just "Okay, this stuff came from a swede in <insert town> between the ages of <x> and <y>"?

 

[Gabryel Karolin]

Unfortunately I got the papers a few months ago so I don't still have them but as I remember it your name would be replaced by a serial-number, only one party would have access to the names behind the serials (don't remember if it was the KTH university or just the Karolinska medical institution or someone else).

 

[Formaldehyde]

I would be incredibly reluctant to take part, especially given Sweden's history of eugenics.

 

[useless]

Some of it's posters would attest to that, Ally.

 

[Loppan Torkel]

I would be incredibly reluctant to take part, especially given Sweden's history of eugenics.

Yeah, that's true. Luckily the Social democrats aren't in power at the moment.