Thursday, February 28, 2008

Biobank? What Does the Public Think?

55 years ago today, Watson and Crick discovered the structure of DNA - the double helix that encodes and passes on genetic information. Since that time, scientists have been working to unlock some of the secrets and opportunities that spring from DNA.

Why does one sibling get cancer and another remain healthy? Why has autism touched so many more lives over the past couple decades? Many health problems are rooted in a complex mixture of genetics, lifestyle, and environmental factors, and answering those questions requires a broad database with genetic, environmental and lifestyle information concerning thousands and thousands of subjects.

A Biobank is such a repository of tissue samples and data. The National Institutes of Health thinks maybe the United States ought to create a Biobank to help out such research.

Of course, any thinking person ought to be enthusiastic about such an important research tool, right? Well, maybe. But there are some other issues to think about, beyond the prospect of curing diseases. Do we really want a massive database of such information sitting out there ready to be hacked and misused? Think maybe your insurance company or the NSA could dream up a few nefarious uses for all that info? And who decides what gets researched?

The NIH has decided to seek public feedback, and Kansas City is one of only 5 sites to host a public forum on the topic. The event is free, and will provide a rare opportunity to learn more about biobanks and provide feedback that will weigh into the decisions to be made. It will be at the Ewing Marion Kauffman Foundation on March 8 from 10 until 1 - go here to register.

This is a fascinating issue - right at the crossroads of society, individualism, ethics and medicine. It's also an issue that is getting addressed without much public attention. This forum provides an opportunity to get informed and be heard.

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8 Comments:

Anonymous Anonymous said...

This is ridiculous- the government shouldn't have a biobank of our DNA! Our genetic data can be misused and misrepresented; couldn't people hack into this? What are the real benefits?

2/28/2008 10:35 AM  
Blogger Sara said...

I recommend that you come to the event to voice your opinion; we are looking for a multitude of opinions regarding the event. Sign up @ www.dnapolicy.org and click on Kansas City.

2/28/2008 11:51 AM  
Blogger meesha.v said...

I have a genetic disease, I would gladly submit my DNA anonymously; for research purposes they don’t have to know who I am , just my physical and genealogical stats. On the other hand, I will not participate if my name is even entered in the system.

2/28/2008 1:49 PM  
Anonymous GMC70 said...

Wow -
I'd like to have some brilliant response off the cuff, but this is far too complex for that. The potential for enormous good - and enormous harm.

Human nature being what it is, I have little doubt the harms will come about. The question is, are the potential benefits good enough to justify the harms? I need to know a lot more before I can make that judgement.

I wish I could be at the KC forum; it sounds fascinating. My wife, with her education, should be there, but same is not possible. Keep us posted, Dan. We all need to know a lot more.

2/29/2008 8:12 AM  
Anonymous dianne said...

I wouldn't volunteer any info about myself to a place such as this unless we have universal health care. Otherwise, insurance companies could try to claim pre-existing conditions and deny insurance....and a little bit too big brother on first blush.

2/29/2008 11:17 AM  
Blogger Ambitious Fledgling said...

Meesha.. is it the herp? ;)

I would totally give up the DNA. Who cares? I guess if you killed or raped someone you would probably care.. otherwise.. I think it's a good idea, even if I stand alone.

2/29/2008 12:52 PM  
Blogger meesha.v said...

I am not telling, but it's not about just giving your DNA for science, whoever has access to the database can use it to discriminate against you.

2/29/2008 1:23 PM  
Anonymous Anonymous said...

I think " Who cares". Let's talk about some real issues that aren't boring and get my blood pumping.

2/29/2008 6:32 PM  

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