How much is your genome worth? Now you can decide. A number of start-ups are offering people the chance not only to own their genomic data, but to sell it to data-hungry scientists too.
EncrypGen, one firm in the vanguard of this movement, is launching its first product this week. Essentially, this is an online database where an individual can upload their digitised genome. It can then be left there until they want to show it to their doctor, for example. Or, if they opt in to a service launching later this year, their data can be sold to researchers too.
With this service, scientists scouring the database will see anonymous profiles, along with details such as hair colour or medical conditions. If they find a profile of interest, they can ask for access. Users will then be able to negotiate a price for handing over part or all of this genomic data. As drugs are twice as likely to make it to market when they are based on human genetics, pharmaceutical firms are likely to be willing to pay the most.
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Payment to the data鈥檚 owner will be in the form of EncrypGen鈥檚 freshly minted cryptocurrency, DNA coin, which can then be traded or sold. Initially, there will be pricing guidelines, but David Koepsell, the firm鈥檚 co-founder, believes market forces will eventually dictate genomic value.
The same laws of supply and demand should reward those with聽less common genomes. 鈥淯nder-represented groups will benefit, so that in the future those聽from demographically disadvantaged populations and with rare diseases will better profit,鈥� says Koepsell. EncrypGen will take a cut of DNA sales and will charge firms to access the database.
A whole lotta genomes
There are already a lot of sequenced genomes out there. More than 12 million people took DNA genealogy tests in 2017, double the number of the previous year. Firms like 23andMe that offer to reveal your predisposition to certain diseases based on your genetics are booming too. Most charge for these services and then also sell the data on to researchers and pharmaceutical companies.
EncrypGen isn鈥檛 alone in trying to return some control back to source. Luna DNA and Zenome both have a similar business model to EncrypGen鈥檚. And Nebula Genomics plans to include DNA tests in its offering, as well. In聽comparison, EncrypGen will suggest firms its customers can use to sequence their genomes.
From a researcher鈥檚 point of view, the more data available the better, says Tim Frayling at the University of Exeter, UK. However, there are risks. People may look to earn a quick buck 鈥渨ithout really thinking about the consequences of knowing about what鈥檚 in their genomes, and what that could reveal about their health鈥�. You may discover you have a mutation suggesting a predisposition to Alzheimer鈥檚 or Huntington鈥檚 disease, for example, but as neither of them has a cure, you may not want to know.
There is also the risk of trusting a company with such sensitive personal data, says Natalie Smolenski at tech start-up Learning Machine. 鈥淲hy should we trust one particular vendor鈥檚 鈥榖lack box鈥� solution to not have back doors, side doors or other serious design flaws?鈥�
This article appeared in print under the headline 鈥淪ell your genome for cryptocurrency鈥�
