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del-fi ??? 23andme: It’s In Their Nature

The Scorpion and the Frog is a fable about a scorpion asking a frog to carry him across a river. The frog is afraid of being stung during the trip, but the scorpion argues that if it stung the frog, the frog would sink and the scorpion would drown. The frog agrees and begins carrying the scorpion, but midway across the river the scorpion does indeed sting the frog, dooming them both. When asked why, the scorpion points out that this is its nature. The fable is used to illustrate the position that the behaviour of some creatures is irrepressible, no matter how they are treated and no matter what the consequences. (from Wikipedia)

Lots of folks are getting hot and bothered over the 23andme announcement that it has been granted its first gene patent. It???s caused a lot of chatter on Twitter, and a lot of handwringing.

Let me ask you all something. Why on earth did you expect anything else?

Genotyping is a commodity service. That???s not 23andme???s business. Their business is selling the anonymized data to those who wish to use it for research purposes  and in doing their own research on the data. They tell you this up front, as they note in the comments on the blog post:

We make reference to our intent to pursue intellectual property rights for discoveries made from our research in both Terms of Service (in section 13) and in our Consent document (sections 3 and 5).

Companies exist not just to provide you with neat services, but to make money. And patenting genes is part of how companies in the drug and health space make money. Whether or not it leads to drugs is another question, one we might ask of shareholders of Millennium and Human Genome Sciences, two leaders in gene patenting yet not two leaders in actually curing very much at all in humans.

Open systems matter because the core of the system is a shared set of norms. Sage Bionetworks is part of an open personalized medicine revolution. It???s why I???ve downloaded my own copy of my own data, and am uploading it into Sage???s Synapse compute environment, so that it can be part of fully open research

23andme wants to be at the center – the czar – of a closed personalized medicine revolution. They want to build a walled garden so big that no one person notices the walls – unless that person wants to do something without getting permission from 23andme, like new research, or starting a company.

That doesn???t make them bad, or their service bad. They???re the scorpion, we???re the frog. Hopefully the sting isn???t bad enough that we all drown. I want 23andme to make money. I???m a paying customer (indeed, I pay for my whole family???s accounts). I???ve filled out every survey, answered every snippet. But I don???t trust them to operate openly, or with my interests at heart. They have $50M in investment to recoup, indeed, to add a zero to. 

They???re going to make choices as they monetize that I don???t like. This is one of them – it???s both not likely to lead to a drug, and it pisses off their fan base. But I???m not remotely mad about it. It???s in their nature. 

“23andme wants to be at the center – the czar – of a closed personalized medicine revolution. They want to build a walled garden so big that no one person notices the walls – unless that person wants to do something without getting permission from 23andme, like new research, or starting a company.

That doesn???t make them bad, or their service bad. They???re the scorpion, we???re the frog. Hopefully the sting isn???t bad enough that we all drown. I want 23andme to make money. I???m a paying customer (indeed, I pay for my whole family???s accounts). I???ve filled out every survey, answered every snippet. But I don???t trust them to operate openly, or with my interests at heart. They have $50M in investment to recoup, indeed, to add a zero to.

They???re going to make choices as they monetize that I don???t like. This is one of them – it???s both not likely to lead to a drug, and it pisses off their fan base. But I???m not remotely mad about it. It???s in their nature. “



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