“Data is the new oil,” says just about everyone. Everyone else seems to think it’s “the new gold.” Is it, though? Unlike oil and gold, data is not a precious non-renewable resource. Wars are not fought over who controls it. Border disputes do not hinge on where it is located. The most salient difference, from my perspective, is that I have tons of personal data. I positively exude the stuff. My resting heart rate, the brand of computer I’m using to write this, the websites I visit while I’m procrastinating, the self-medicating I’ve used to help get down to business—I could go on. Surely this must be worth something to someone. Yet my economic stature is commensurate with someone who holds neither oil nor gold. So either my personal data is not like those things, or I’ve been letting this bubblin’ crude go for a steal.
I’m willing to bet the latter. Just about all of us relinquish control of our data when we “accept the terms and conditions.” It’s the price we pay for “free” internet services like email and social media. It’s not just the data—it’s our personal details. One way data definitely is like oil and gold is that it is worth much more when it is processed. Just as oil is refined and gold assayed, data must be sifted. Without knowing my age, my resting heart rate is of limited utility for a scientist working on a vascular drug. As various Facebook and Cambridge Analytica scandals demonstrate, careful sifting can literally change the course of history. As quotidian as my personal data may be, I have to assume it is at least potentially valuable.
Personal genomics companies offer DNA analysis to individuals who send in a sample (usually saliva in a test tube). The service usually costs between $100 and $200. The collective worth of this data was underscored in July when 23andMe, one of the leading companies, opened up its customer’s data to pharmaceutical giant GlaxoSmithKline for a reported $300 million. David Koepsell, cofounder of Encrypgen, points out that 23andMe’s customers were allowed to opt out of the questionnaire that makes their data valuable, but few bother to read the fine print. Analyzing the transaction, Koepsell estimates that if 23andMe’s customers were paid directly for the data sold to GSK, each would net about $130.
Encrypgen— helmed by Koepsell, a former lawyer and philosophy professor and his wife, Vanessa Gonzales, a genomic scientist— is one of handful of companies that have formed to give people a blockchain-based platform to sell their DNA data. This cottage industry may well be the first to capitalize fully on personal-data-reclamation, for the simple reason that the data is so valuable. “Virtually all genomics companies monetize the genetic data of their customers in some way by making it accessible to to pharma and biotech companies,” Koepsell says. “We want to enable actual individuals to retain ownership and control of the data and to essentially have full control of who accesses it and for what purposes the data can be used. And to be very transparent by using blockchain as a public ledger to document and track these permissions.”
Read the full article by Greg Milner