Wednesday, September 17, 2008

ThinkGene Wars!!!!

Drew over at Think Gene (Which BTW is getting a heck of a lot of the media's attention. Including WSJ, NYT....etc) unleashes a heck of a post that I wanted to comment on.
Drew and I got into a heated internet conversation about The power of Google. This all started when I put up a video called Master Plan the Movie.....
Why did this get me going? Because, like Drew, I admired the guys at Google. As a startup guy, I admired their pluckiness and hard work. Thus I read their book "The Google Story" and then it hit me.....
From the book
We need to use the largest computers in the world," Venter said. "Larry and Sergey have been excited about our work and about giving us access to their computers and their algorithm guys and scientists to improve the process of analyzing data. It shows the broadness of their thinking. Genetic information is going to be the leading edge of information that is going to change the world. Working with Google, we are trying to generate a gene catalogue to characterize all the genes on the planet and understand their evolutionary development. Geneticists have wanted to do this for generations."
And then I stumbled on the Master Plan video.......Just month's later......I see the launch of 23andME.....of course. It makes a ton of sense. Acquisition of DNA under the guise of social networking....Brilliant!!!!!
But as I read their terms and agreement I began to become dismayed...
You see It turns out the DNA they take, becomes their property. Not yours. That was a big deal to me, why? Well, most laboratories allow you to take back your sample. In addition, if your sample is being used for "Human Research" It HAS TO BE UNDER THE OWNERSHIP OF THE PARTICIPANT! These are the rules set forward by the NIH and any Institutional Review Board.....Why is that important? You can read my post about it here.
Suffice to say, an research done on these 23andME samples would be viewed as unethical in the scientific community. That scares the dickens out of me. Because, there is no way 23andMe did not investigate whether they should use an IRB or go by accepted policies in performing Human Research.
But my guess was they said "How can we hold onto these samples for infinity? Soon the whole genome will come out, and we can run genomes on these samples. We will keep them interested by filling out questionnaires and social networking. But we won't follow ethical rules of research, because if they all pull out, then we lose the ability to do further testing on their samples"
Why did they think that? Because in 2004 when I thought about creating a 23andME, I thought about that. And these guys are at least as smart as I. If not as smart as Drew, who says
So what if Google is getting into health care? Give me one concrete fact why Google in health would make my life objectively worse. Show me evidence of this impending Google malice that threatens me personally.
I think I just did give you one piece of evidence Drew. Here's another....
Google is moving their data centers into the ocean. They are going to do this under the guise of being green. I gotta love Google. Everything has 2 effects and 2 meanings.......very occult.
Why???? They are filing patents for this neat tech......
The patent filing says the data centers would be located 3 to 7 miles offshore, which may signal that Google’s interest in undersea cables goes beyond connectivity between land-based data centers.
The offshore location also raises interesting questions about jurisdiction, and which laws would govern the handling of any consumer data managed from the floating data centers. U.S. territorial waters typically extend 12 nautical miles, but other nations’ claims range from 3 miles (Singapore) to 200 miles .

The offshore location also differentiates Google’s plans from those announced by IDS, which plans to build up to 50 data centers on de-commissioned cargo ships moored at piers in major cities.
Which is why Drew's comment really gets me scared.
From Drew-
I don’t see “we will share your information with banks” in Google Health’s user agreement, and why should I trust HIPAA and the US government more than Google? From what I read here, Google’s policy seems to be even more private than what’s required by HIPAA. My assumption is that Google decided that compliance with HIPAA would be expensive, unnecessarily pedantic, and an tool to be used against them by a potentially hostile regulatory establishment, so they gave the entire act a big “F-U” and wrote their own policy.
I think it is something quite different Drew. I think they are moving in a way that no government will ever be able to regulate them. Even worse.....who will then protect your data? Google? These moves are akin to Russia lining up troops on the Georgian Border or Iran Test Firing Missles that could reach Tel Aviv or Jerusalem. Not an act of war itself, but a trend towards something that should get our radars up.
I would like an explanation other than we are trying to be green, when they could be just as green 1 mile out from Sea and still in the Jurisdiction of the Good 'Ol US of A......
Drew then goes on to say
As for the futures of doctors, I have bad news, Steve. Health care is seen as much too expensive in the USA. Pretend we cut costs by 50% for the same standard of care. Where in that equation do doctors get paid twice as much to see half as many patients? WHO is going to pay doctors more? On average, for the foreseeable future, the median pay of doctors will only go down.
He goes onto say that Google and others will create algorithms to replace many of the common things we do in primary care.....which scares the hell outta me because this is pretty spot on.
I am very scared about this. What is the opposite of personalized medicine? Algorithmic medicine. We have been practicing algorithmic medicine since the inception of Evidence Based Medicine....It is not working so well. That's why we are pushing Personalized Genomic Medicine forward!
The only way to pay doctors more than the 30 cents they receive on the dollar reimbursed is to remove the bueracracy and healthcare managers that get paid millions more than the physician providing the care......but that is a debate for another day....
The Sherpa Says:
I hope my fear of Google/23andME avoiding regulations, shirking the responsibility to have an IRB (which Coriell does use BTW), and desire to sell your data to third parties, IS completely irrational. Because if it's not, using their services may ultimately mean paying a price that I am not willing to take.

1 comment:

Alberto said...
Google's cofounder's wife is a cofounder of 23 and me?! I hope to read soon a post by you on this issue. Regards