Genetic data is used to perform statistical analyses of disease associations. Shutterstock
Did you know that when you take certain genetic tests, the company can make money by on-selling your data to other businesses?
Now new blockchain-based marketplaces could give individuals control over access to their encrypted DNA data, and the ability to sell it to research companies for their own profit.
Consumer DNA testing saw unprecedented public demand in 2017. By one estimate, 10 million genetic tests were conducted on individuals by companies such as AncestryDNA.
People using these services may not realise that the real money for some of these companies could lie in the sale of genetic data to third parties for medical research. A 23andMe board member reportedly explained this in 2013:
The long game here is not to make money selling kits… Once you have the data, [the company] does actually become the Google of personalised health care.
Understanding the complex relationship between genetics and disease requires powerful statistical tests. The genomic healthcare revolution therefore needs many genomes for its fuel.
At the same time, genomic data can reveal highly personal information about us (and our relatives), especially when paired with our very private health data. There are competing interests between individuals, corporations, and the research community.
Marketplaces for buying and selling DNA data would be established by the creation of dedicated cryptocurrency “tokens”.
People will be able to sell their (encrypted) genomic data to researchers for tokens, which they can cash out or use to buy services, such as disease risk reports.
All transactions would be securely recorded on the blockchain.
This is a fledgling industry and we’re likely to see more startups in this space. To gauge what this new ecosystem might look like, we spoke to representatives from three companies: David Koepsell, chief executive of Encrypgen, Bob Kain, chief executive of Luna DNA, and Alexey Gorbachev, a founder of Zenome.
Of these three platforms, Encrypgen seems to be the farthest along. It is free to upload and securely store genomic data for up to five family members (including pets), and share data with your doctor.
Consumers can use one of the sequencing providers on the private blockchain, or upload their DNA sequence from another provider. Access is controlled by the user. If DNA data comes from another provider, you may have already signed an agreement that allows third-party data access.
You will be notified if someone wants to buy access to your genome (using Encrypgen’s $DNA tokens) and can say yes or no. You can remove your genome from the service (and future access) whenever you want, but any use previously granted would continue.
Zenome’s platform makes use of the computing resources of many “nodes” (different people’s computers) in a distributed approach to genomic analysis. To protect user privacy, genomic data is fragmented so that no node has a full copy. Personal information is stored on a user’s own computer and encrypted.
Initially, it will be free to upload data. In return you receive secure storage and a free report about your health and origin. Users can sell access and buy analysis services using Zenome DNA (ZNA) tokens.