After having many discussions about this. First one in 2007 with Matt Tindall and others with a host of people, you know who you are!
I am even more convinced as we are a "GIVE ME MY DAMN BIOMETRIC DATA" society. Are patients really to be expected to give up their data to Google for "The good of the cause"?
The answer: Absolutely not.
You have heard of Google AdSense right?
Google has clients that want to advertise, Google needs data to display these ads. In the internet world, this is known as content. What does Google do for this "content"? They pay you. They cut you checks for your blog/website/etc. (i.e. data)
Well, I have a question to those "early adopters (read- suckers)" Why did you give google/etc. your genomes for baubles?
Why? For the good of it? Because you bought into AnneW's story?
GoogleAdsense existed before 23andMe. Most of you are smart silicon valley types. Why did you not demand a Google check?
My thoughts. For every piece of biometric data you pay some company to give you, the MOMENT, yes the MOMENT they sell it to a third party, you should get yourself a royalty check.
I wanted to give shares of my company to research subjects. But, after speaking with IRBs, this was a conflict of interest. But not if the data were sold AFTER research was done.
My advice, if you are smart and are a lawyer, give me a call. I have some ideas of what area of law you should research!
The Sherpa Says: Stop Paying someone to sell your data and make profit. Sell your data and ask for a royalty!