I hate to be negative about a startup that way, but it's important to realize that "direct-to-consumer genomics" is a scam. I went to a presentation by a founder of one the competitors (there are 3-4 high-flying competitors in the business), and I had the highest expectations. But then throughout the presentation I couldn't quite figure out what the company actually does. So I asked. And the answer is marketing and litigation.
* these companies don't do any research
* they don't even own sequencing equipment
* all they do is send a sample of your spit to the lab, and send you a pretty writeup
* consider why is there no "direct-to-consumer blood tests" even though that information is far more actionable
I wouldn't even have a problem with this if it was a proper scam, like XanGo MLM, a nice nutritional supplement scheme, make-money-fast setup, etc. With these you know upfront what you are getting into. But these guys look so clean, and go out of their way to skate the narrow line next to the true medical advice. Needless to say the legal budgets must be non-trivial.
I ran this by my cousin who is in nursing school. And she goes "Oh yuh, they are teaching us how to talk to people about all the nonsense results people [in increasing numbers] will get through these outfits."
Not sure all personalized genetics companies are created equal. You seem to be pretty misinformed about what we do.
* We indeed do conduct our own research and are currently collaborating with some prominent research institutions (Parkinson's institute).
* Why do we have to own sequencing equipment to be useful and/or legit? Does Google own the webpages they index?
* We give you much more than a "pretty writeup". This includes crowd-sourced research initiatives, ancestry and health communities, and many interactive ways of analyzing your own data. A ton more things coming in the future.
- a better database for people with Asian heritage. I could be wrong but I think no company in the West has this yet - well a company in Greenland is working on a partnership with a Hong Kong company
- something like HIPAA or some privacy clause. I don't want my insurance companies to know I'm genetically prone to X
- I'm not keen on someone trying to patent my genes either (don't know if you guys will or not though)
GINA prohibits employers/insurers from discriminating against you based on your genetic info
That's an incredibly weak response. Someone asks you about the privacy you provide and you say it's illegal for other people to misuse the information. That's like me asking a company what they're going to do with and how they're going to protect my social security number and the company rep pausing and saying "Um, yeah . . . don't worry, identity fraud is illegal." Not the most confidence inspiring thing I've ever heard.
I spent several years in the privacy sector and take it from me that protecting this kind of information is hard enough when the organization actually has a commitment to meeting industry standard privacy best practices and laws, let alone at a company that apparently ignores them. (Please correct me if your company actually does comply with HIPAA or any other federal privacy laws -- I'm just going by you responding to a question about your privacy compliance by rattling off a reference to some newly-passed law that is non-binding on your company.)
Relying on GINA here is completely irresponsible. If you're serious about handling sensitive health information, you ought to comply with HIPAA and have that compliance routinely audited. Period.
Otherwise no one should trust your company or, in my opinion, take it seriously at all.
The problem with SNP-based association is that, for the vast majority of disease-associated SNPs, the relative risk is only increased on the order of a few percent at most. When it comes to predicting the risk of an individual (as opposed to a population) developing a particular disease this is virtually meaningless. No doubt the current technology will appeal to some out of curiosity. However I do think that the vast quantities of sequence that will be generated by next generation platforms over the next few years will lead to the ability to usefully predict disease susceptibility of an individual basis.
Why do you want a 454? I mean, as awesome as it would be to know your own genetic code, it would be of no practical use to you, even if you had a full featured tool to explore it.
And don't even get me started on personal epigenome or miRNA-omes.
Well, mostly I was just trying to see if they were headed in that direction... but there might be some logic in that SNPs do not always represent the functional differences in genes - they generally have their power because they are correlated with the nearby functional difference. The full set of DNA changes might be more precise in terms of really really pinpointing the right genes. But, I guess the true power comes with correlating everybody and their phenotypes together, in which case it doesn't matter if you're looking at unexplainable SNPs or not.
* these companies don't do any research
* they don't even own sequencing equipment
* all they do is send a sample of your spit to the lab, and send you a pretty writeup
* consider why is there no "direct-to-consumer blood tests" even though that information is far more actionable
I wouldn't even have a problem with this if it was a proper scam, like XanGo MLM, a nice nutritional supplement scheme, make-money-fast setup, etc. With these you know upfront what you are getting into. But these guys look so clean, and go out of their way to skate the narrow line next to the true medical advice. Needless to say the legal budgets must be non-trivial.
I ran this by my cousin who is in nursing school. And she goes "Oh yuh, they are teaching us how to talk to people about all the nonsense results people [in increasing numbers] will get through these outfits."
Some more reading: http://microarray.wordpress.com/2008/06/24/deadline-today-fo...