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I think the company disguising what business it is actually in is fraudulent and defeats the informed consent. If the transaction is actually to collect my gene
by gnu8 9y ago
I think the company disguising what business it is actually in is fraudulent and defeats the informed consent. If the transaction is actually to collect my genetic data for a database that will be sold for millions of dollars and eventually used to make billions of dollars selling drugs, then why am I paying a fee at all? I should be paid several hundred dollars for contributing my sample, with the cheap genetic testing thrown in as a bonus.
- sjg007 9y agoThere's a company out of MIT working on this and using a blockchain as the medium for sharing your genome and medical information. Basically it would allow you to get paid for your DNA and choose to whom you want to sell it. I think there's another company that wants to treat your genome similarly and allow other companies to write apps that use it (same idea but no blockchain). It is kind of a chicken and egg problem though. You want the test to find out if you have something actionable/drug-able so you agree to give up your sample and related IP rights to get the result. The real issue though is that while the technology is developing and we are gathering a lot of information, there is nothing actionable except in a few limited cases.