The big revelation about the past ten years of internet growth has been the degree to which we have all been unconsciously being monetized. Our every piece of public, and sometimes not-so-public data has been earning platforms like Google and Facebook billions of dollars, often without us realizing it. We just didn’t read the fine print. Usually, we should understand that when you aren’t paying for a product, your ARE the product. Sometimes, however, even when we pay, we become the product. Commercial genetic testing is a prime example.
Since commercial genetic testing first became available, about 50 million estimated customers have purchased not only a test that can tell them a bit about their heritage, but also 80% of those purchased the right to have their data sold many times over, earning the testing companies many times more than the costs of the tests. When they generously agree to have their data used for science, they sign over any rights they have to their data. Now, data cannot be owned. Your genetic data cannot be copyrighted or patented, and when it is sold it is deidentified and aggregated. It is extremely valuable for science, and also a huge source of profits for the companies who sell it.
So far, Americans make up the bulk of consumer genetic testing data, but everyone is eyeing places like Africa. Africa, Asia, and the global South contain vast, largely untapped riches of data useful for science, and likely highly profitable for whomever stakes their claims. Given the value of this data, however, and the poverty that exists through much of the world, a new model seems more just: share the profits. Why shouldn’t everyone who has their data used for science share in the wealth? Even a few dollars per year could be life-changing money. Imagine receiving payment for your genetic data’s sales every time it is sold (23andMe estimates several hundred sales per customer, and studies suggest those sales add up to perhaps 100s of dollars, possible hundreds per year). Even just a few percentage points per sale could mean the difference between food insecurity and knowing where the next meal will come from.
Fortunately, platforms like EncrypGen’s blockchain-mediated Gene-Chain stand ready to get the new $DNA economy working for the world’s poorest, as well as everyone who has already done a consumer genetic test. With global health initiatives like those spearheaded by the African Society of Human Genetics, and companies like Indygeneus.ai and others, the time is right to build into the coming wave of African genetic testing a platform that can deploy equity, as well as propel science and innovation. There should be no delay in ensuring that everyone benefits, not just from the inevitable though sporadic scientific breakthroughs that come from genetic research, but also by having enough of a share in the immediate value, the tangible wealth changing hand every day for data that is helping to bring those breakthrough to life.
Everyone has DNA, and should be able to put it to work for them, both for the eventual use of that data for their personalized medicine, and to pay for clothes and food, right here, right now. Everyone soon will do that with $DNA, the currency of this revolution.
We are excited and ready to work with all those who feel that justice and equity demand more sharing, and the decentralization of science, or De-Sci – perhaps just as revolutionary as the DeFi revolution now underway.
Written by David Koepsell