Overselling Genomics, Sherpa Plan part 1

Yes finally, at last I am going to release my Sherpa Plan!

Thank you to all who have helped form this unique set of operating instructions to help rescue the promise of personalized medicine.

Now to Problem Number One....

Lack of Public and Physician Education by qualified sources.

How many people have heard of NCHPEG? I have, they are the National Coalition for Healthcare Professional Education in Genetics and they are a fantastic resource. But.

Well, my team took a poll (non-scientific) of 100 primary care physicians........how many do you think have heard of this organization............6 and they all had spoken with a geneticist in the last 2 months. In other surveys, physicians state that they rely on the same media that patients do to receive information about genetics. That's just not right!

Friends......we have a big problem when the people who are supposed to be implementing genetics get their information from an unreliable news media. Why are they unreliable? They like everyone else are expected to do more with less.....thus fact checking has become a thing of the past........

So therefore, if physicians are going to use the Sunday Times as their information, then we are going to fact check it ourselves......

Together with Drew Y, we are creating a community to fact check genetics reporting. It is called HelixGene Foundation......Thursday we will have sent an email to over 1000 genetics professionals inviting them to join our community.....

Attention Media and Public Relations! You are now forewarned.....We will keep grades on all of you and post them so that the public and physicians who are reading your articles are given the courtesy of Peer Review!

Want to join our community? You need to verify your PhD, MD, or CGC credentials and then we will sign you up.

The Sherpa Says: If we can control the accuracy of information, we will avoid overselling genomics. Why is this important? To prevent articles, like the one of Dr Khoury in the NEJM essentially bashing SNP scans. The problem? PMDs viewed that article as marginalizing the whole field of personalized medicine. Not just the SNP scan! Trust me Dr Khoury, we need more than a treadmill to carry out personalized medicine.

A lot to chew and then spit!

As my friends and I work furiously to get the Sherpa's Plan to public(BTW it will be released in parts, and no I didn't spend a T.Boone Pickens like 1.2 billion dollars on it.) , some things have happened in the blogosphere.

Let's recap.

Last month I receive an emailer about price point from Navigenics. My friends who took the test did too.

This had me wondering......what is the market for a test? I delved back into my business plan from 2005. You know...the one where I actually created 23andMe but called it helixhealthofconnecticutcare. I looked at the stats on who would pay what for a test and it hit me.......they're gonna drop their price and service. And switch to a full subscription model. BTW, in my old model the feds don't get us, but the customers do b/c they aren't trusting what we are doing with their samples, b/c we aren't a not for profit company......Instead we are profiting off their DNA......Hey that gives me a great idea.....Why not send 23andME public, giving one share of stock to each participant???? Don't say I didn't give you a brilliant idea Linda.....BTW, these would be common stock....Oh well, no phone call from 23andMe......

But then, I received an invite from a business consulting firm I work with to participate in a survey.....Guess what? This was the physician version of the same marketing questionnaire. Interesting. I am now thinking....man if Navigenics would only give me a call we could chat about something very useful......but.......no phone call :(

By that time. Drew Y at Think Gene had just visited Coriell and posted about the Death of DTC genomics...... This got him blasted almost as bad as the Sherpa did.....but believe it or not, upon talking to Drew, he also received a ton of tremendous support.

Then suddenly, well maybe not....I had heard about this from a little birdy on the other coast, 23andMe Democratizes (code word for attempts to do what Coriell is doing only for 399 instead of FREE) their service. Well, not exactly what Coriell is doing. Coriell is focusing on Medical Traits and has launched an Informed Cohort Oversight Board. A concept developed by the good boys in Boston.....Which I am proud to sit on......So what does the blogosphere do? What it always does....fight...."This is Great!" "No this is Bad!" "No this is illegal" That's why I love our little DNANetwork!!!! So Drew again posts on this and gets some heat, but also gets some good press...

Even from a reporter who wouldn't give him the time to chat a few years ago.....But now agrees with Drew.....sort of.....

With all of this rigamaroll even the Kaiser Team chimed in

23andMe co-founder Anne Wojcicki said, "We're really focusing on the democratization of genetic information" (Tansey, San Francisco Chronicle, 9/9). The firm hopes the price cut will provide an influx of genetic information and "hasten the day when a full genetic screening becomes routine medical practice," the AP/Denver Post reports. Wojcicki said, "The mission of the company has always been to enable anyone to be able to get access to their genetic information. We really believe strongly that at some point everyone who's born will get genotyped," adding, "You'll have your information and you'll use that to help guide some of your health care decisions." Linda Avey, the company's other co-founder, said, "It's just a data problem. We don't have enough" (Wohlsen, AP/Denver Post, 9/8). Avey said if the price "was what was really holding [consumers] back, this will be a better price for them to get involved" (Pollack, New York Times, 9/9).

Blaine jumps aboard and writes "But genetic genealogists (and undoubtedly many others) DO chose their testing provider based on the results they receive." and that's why 23andMe will succeed.... But you know you have won when the CW or WB or whatever they are calling themselve covers you. But then Drew insults me "If you paid $1000 for 23andMe.v1, and you are pissed, and you demand a refund —you are a fool." and goes on to champion Coriell

So what's my take.....this is all a distraction. We need to focus on what is real and what is missing.

That's why I will launch the Sherpa's Plan in 1.2 weeks. I am so frustrated that this is what it has come down to.......The healthcare system is found lacking and all we have to offer it is 399 SNP scans??? My god. That's not gonna hasten anything....all it does is turn physicians into skeptics....

The Sherpa Says: There is something better up this mountain. Just because you ascended your first 1000 doesn't mean you are at the top....more likely, you are still closer to the bottom....Remember Manhattan was bought for bobbles.....I am sure the Manhattan, Minqua, Savanos and Wappanoos are pissed about that trade too.........