Katherine Kelly is a molecular biology major at Princeton University currently writing her senior thesis on personal genome services. As part of her research she would like to interview customers of 23andMe and Navigenics about their experiences of the personal genomics process.
The problem: although she can find plenty of 23andMe customers, she is yet to identify a single customer of Navigenics.
If you are a Navigenics customer that is not financially involved with Navigenics in any way, and would be happy to answer a few
questions (over the phone if possible) about your experience taking
the test, what you expected, and whether it was worth the money, please email Katherine: kwkelly(at)princeton.edu.
(As an aside, I've spoken to several people here at the AGBT meeting about the Navigenics customer base - it's pretty clear that they're receiving virtually no business directly from customers, although they have apparently had some success convincing companies to enroll their employees under a share-payment scheme. At a panel discussion on Thursday night, Navigenics co-founder David Agus that this approach allows Navigenics to tell companies what proportion of their employees are at genetic risk for obesity, diabetes, and so on. But given the incredibly low predictive power of current genome scans for these conditions (particularly obesity), how useful would this be? And how many people are willing to give their employers access to their genetic information, even in a nominally aggregated and anonymised fashion?)
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23andme is great for the "do it yourself crowd".
Navigenics is good for the "I'm rich and I don't have hours to invest in digesting complicated scientific information".
Today, I'm a happy 23andme customer. One day, maybe I'll be rich enough and busy enough to use services like Navigenics. Not today though.
Navigenics is great for the 'I want to pay a lot more for a lot less' crowd.
*cough*
?
We have taken care of several people who have had the Navi scan.......almost all have been affiliated with Navi in one way or another....of course as a health care provider....I can't tell you who they are......we actually are covered under HIPAA....unlike DTC companies...
BTW isn't genotyping employees a GINA set up???
-Steve
www.thegenesherpa.blogspot.com
Katherine,
You should do something more academic for your senior thesis. Instead of doing a thesis about DTC genetic testing, do a theses about the tests that these companies do. You will get more out of your education by doing what I said.
Signed,
N/A
Steve,
They are using company employees to test if these tests are even any good. I don't know about what they will do with the data (share with whom, if even).
Signed,
N/A
"Q:If I am a resident of Maryland, may I order Navigenics services directly?
A:No. The State of Maryland requires that all genetic services and tests be ordered by a physician on behalf of residents. Please work with your physician, who can place an order on your behalf directly by calling Navigenics Member Services at (866) 522-1585."
But what id they decide to fire their employees???? It sure sets up an issue. That's what the chamber of commerce argured about for 10 years with GINA.......
Can't wait to see what happens....
-Steve
Daniel Weeks' lab (U. Pittsburgh) has a paper in PLoS Genetics reviewing the clinical utility of personalized genomics. A link to Jacobsdottir et al. and a link to MedPage Today's synopsis.
Their conclusion: "Our analyses and examples show that strong association, although very valuable for establishing etiological hypotheses, does not guarantee effective discrimination between cases and controls."
This, based on analysis of sets of SNPs for four diseases.
DNA information for age-related macular degeneration had the most clinical utility. Constructing a receiver operator characteristic curve, the authors calculated an area under the curve of 0.79.
(A "perfect" test returns an AUC of 1.0, while one that is no better than chance will have an AUC of 0.5. However, the AUC is greatly affected by the population chosen for study.)
Type 2 diabetes -- AUC 0.64
Prostate cancer -- AUC 0.56
Cardiovascular disease -- no predictive power
Crohn's disease -- 0.66.
> This, based on analysis of sets of SNPs for four diseases.
Er, five. Learning to count...