I recently came across the project Genomequity, which offers a refreshing take on DNA research by creating a collaborative platform that rewards users for sharing their DNA. Similar platforms currently in existence do the opposite and reward the companies for selling their users’ data – users who also had to buy their products in the first place. It is a defective system that centralizes power in the hands of a few organizations.
As it is often said these days, data is the new oil. 90% of the data ever created was created in the last two years - a truly mindboggling fact. In my opinion, one of the greatest challenges of the 21st century will be who owns, and who controls this gargantuan amount of data that is being produced.
This platform’s main advantage over other similar platforms is enabling users to get compensated for sharing their data. DNA testing kits are available for fairly cheap these days, however the problem is that the users pay for this service not just by buying the companies’ products, but with providing their data to these companies who can then later sell it at a profit to other research companies. Genomequity intends to give control of this data to the users. Physical samples and personal information that is anonymized and aggregated into a larger database is made available to researchers, while the users get compensated for providing their data. The enabler of the exchange of value is the Genomequity (GEQ) token, which gives access to pharmaceutical companies, academic researchers and biotech companies to use the database in exchange for fees, and compensates users for providing their data, who in turn also get access to a digital DNA profile in the system and additional services. App developers and service providers may also create additional applications and services on top of the platform, in turn for GEQ token. Users may earn tokens for participating in sponsored research studies on the platform.
There are a bunch of different methods for analyzing the DNA of the users, such as SNP genotyping, targeted gene sequencing panels, exome sequencing, and whole genome sequencing, each costing a different amount and being used for specific use cases. The team is made up of various researchers and Ph.Ds in bioengineering and neurobiology.
I think this kind of project will be abundant in a few years down the line when the importance of personal data on the internet becomes clearer to more people, which in turn will put pressure on more and more businesses to adopt similar business models. Giving the data in control of the user is of paramount importance. Additionally, we need to find ways to aggregate this data in a way that it can be used for the good of science and also, more importantly, is not an oppressive tool in the hands of giant corporations and/or governments that will use it to maintain their positions of power. This platform could be a component of this new architecture of data while also potentially advancing the research being done in biotech and related fields so I will definitely keep an eye on how its development unfolds in the coming years.