Thursday, September 11, 2008

Personalized Medicine Collaborative (PMC) at the Coriell Institute for Medical Research

Again, from The Genetic Genealogist (which is such a great blog, honestly - subscribe if you're interested in this kind of information) comes the fact that The Coriell Institute for Medical Research is offering free personal genome scans to 10K participants through 2009 with the ultimate goal of 100K participants total. The results are not as extensive as the ones provided at 23andMe, but you can't beat the cost.

This is located in New Jersey and you have to attend in person, but I've enrolled. It's worth the hike to me.

From the site:

Information for Potential Participants
The Coriell Personalized Medicine Collaborative will take an evidence-based approach to determine what genome information is clinically useful. Participants may benefit from this research study by utilizing potentially medically actionable information about their personal genomes in their medical care. Participants may share their genome profile with their physician(s) in order to use this information to help determine appropriate medical interventions and/or recommended lifestyle changes.

From the FAQ's:

How can I benefit from Personalized Medicine?
Personalized medicine will eventually improve the effectiveness and lower the cost of medical care. Instead of a "one size fits all" approach to treating disease, care will be tailored to consider information about your personal genome, your DNA. Today, this approach is not routine. Our study is designed to determine what genetic information is useful in medical care in an effort to determine best practices for the implementation of personalized medicine.

In principle, you could benefit from personalized medicine by having a doctor decide to treat your breast or prostate tumor with drug A and not drug B because it is more likely to be effective given the presence of specific genetic variants in your genome. Additionally, knowing your potential risk factors for disease may allow preventative measures to be taken before disease onset. This is possible because most genetic markers are simply "risk factors" and will not cause a disease outright.

Also from the FAQ's. I'm not overly thrilled with the 'adopted children' line, but that phrase is so par for the course from the nonadopted:

Can the CPMC benefit adopted children?
Potentially. Adopted children often do not know their birth parents and thus, are unaware of genetic conditions that they may have inherited. By participating in the CPMC, an adopted person may gain insight into his/her previously unknown genetic background.

Considering that us first crop of BSE'ers are staring into the abyss of middle age, considering the arduous task of search, and considering the large number of closed era adoptees who honestly may never know their origins and/or medical history, personally I give this study two ungrateful thumbs up. Also, a successful search does not automatically grant access to genetic medical history, as evidenced by yours truly. You can't force someone to do the right thing and let you know the truth, but your genes don't lie.

If you're interested read over the entire site, and understand you are donating your DNA to this study. Other good blog posts about this study are at ThinkGene here and here

3 complaints from ingrates:

Samantha Franklin September 11, 2008 at 10:43 AM  

Thanks for posting about this! I wish I lived closer to NJ and could take advantage. There is a very interesting article called "Donated Generation" about issues regarding DNA and assisted reproduction ~ alot to think about.

KristySearching September 11, 2008 at 1:16 PM  

"Also, a successful search does not automatically grant access to genetic medical history, as evidenced by yours truly. You can't force someone to do the right thing and let you know the truth, but your genes don't lie."

I am really sorry your mother didn't give you the information you need. I cannot even begin to understand her thought process. I am sorry you have to go to such lengths for information that is rightfully yours. I know that really doesn't help you any, but big hugs anyway!


Unknown September 12, 2008 at 6:34 AM  

This is such a good idea. I just lost a friend to a very aggressive and rare form of cancer. She was adopted but never searched for her parents. I have often wondered if she'd her family medical history (or, at this program would permit, been aware of what was in her genetic make-up) perhaps her doctor might have known to be more vigilant.

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