Saturday, May 23, 2009

Have You Used the Services of a Genome Scan Company?

CWRU Wants to Hear From You: not just for Parkinson's Disease Genome Scans

Located in Cleveland, Ohio - the city where engineers just moved a 5,000 ton bridge section - is Case Western Reserve University. They are conducting a survey and need input from people who have used genome scan services personally.

Steve has already done a phone interview with Marcie Lambrix at CWRU about why he enrolled in the 23andMe genome test offered for Parkinson's Disease patients. He explained what he hoped to learn and why he felt it was important to take part in having his saliza analyzed.

Marcie also asked if we would post an ad for the CWRU study and that is exactly what we are doing albeit a bit late.

We know there is some debate about the ethics of genome testing but we're not going to go there today. Nor are we going to discuss the argument that results won't be an accurate cross-section because the responders will be among the more intelligent because they are readers of things scientific or semi-scientific. We can pick that nit another day. And we're not going to go into the genome "hacker" area because we take those hacking risks every time we put information out there...although those are financial rather than the obvious uses of genome information.

The fact is that many readers are PWPs of relatives of same and there is some life and death concern here. And we think that the studies have value.

Have you used the services of 23andMe, deCODEme, and Navigenics, or Knome?
If so, we want to hear about your experiences!

Attention: Early adopters of Direct to Consumer Genome Scans,
Researchers at Case Western Reserve University want to talk with YOU!
We’re currently conducting in-depth interviews with early-adopter/consumers of such tests to learn more about an individual's decision to us Direct to Consumer genome scanning, what they understand to be the benefits and risks of this technology, both for individuals and society.

Our interview question will address how the participant learned of whole genome scanning services, why theywere interested in trying the technology, how they feel about the results that they have received, what they have done with the results, and if and how they have used the results to inform their individual healthcare decisions.

To learn more about participating in this study,
Please contact Marcie Lambrix via at by phone 216-368-8753 or via

Just to give you an idea of what the results of this survey could look like
Flawed link to CWRU Center for Genetic Research & Law - it works but it's not pretty

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