The value of a person’s data has become a topic of hot conversation, largely driven by the tech world. Many companies assemble your information allowing advertisers to target you more effectively. Often that information is exceptionally personal, like purchase records, web history or social media posts, all of which can reveal a great deal about your life. Your genome, on the other hand, can reveal a whole other level of information about your body, your health and even aspects of your personality.
When it comes to genomic data, there are similar conversations taking place about how information should be shared and who should benefit.
Some companies offer genetic sequencing at a lower cost to people, but in exchange for that utility, the company sells their genomic data later for additional revenue. Other companies create a revenue sharing relationship with individuals.
What your personal data is worth is one of the most relevant conversations happening right now, and it doesn’t get much more personal than your genome. So let’s take a look at the various models for generating revenue from genomic data, including the ways that you might directly or indirectly benefit.
Why your genome has value
The economic value of a genome is what we spent most of our last post on, and there’s a lot to unpack. If you really want to understand the potential value of a genome, definitely read the full article here. For this post, the most important part to understand is the usefulness of genomic data for research cohorts:
Researchers in both [academic and commercial] settings need enough individual data points to draw conclusions, which can sometimes require thousands of participants. The group they assemble is called a cohort.
When assembling a cohort, you’re often looking for incredibly specific characteristics. For example, you might want to look at how genetic and environmental factors combine to contribute to a health problem. In that case, you need to find a representative yet diverse sample of individuals. The more robust the study, the more data points you need. Do you need to control for specific risky behaviors like smoking? What about specific ethnic backgrounds that seem to link to the likelihood of contracting the disease? All of the demands of creating a successful cohort make it incredibly challenging to recruit participants one-by-one.
Other health data points ranging from electronic health records to digital fitness trackers can help transform genomic information into robust profiles with incredible research applications. All of this can supplement your genome with a lot of economic value—value that companies would love to bring into their operation.
How you might see that value
For the most part, when you turn over your data, you get some kind of return, even if it may be limited by comparison. What form that return takes can vary dramatically. Often you gain access to a service. For example, most social media platforms let you use the service for free, and in exchange, they sell the data they collect when you use that platform.
Similarly, direct-to-consumer genetics companies may sell anonymized customer data to supplement their revenue streams and offer cheaper tests. 23andme has grown their valuation to more than a billion dollars in part off the strength of agreements with drug companies to share/sell their data and work together on research.
Other companies have popped up with a competing business model, hoping to bring in customers by offering them a more direct share of the profits. LunaDNA allows users to store their genomic information on the LunaDNA platform. When researchers purchase an individual’s de-identified health record for research, that individual is given shares in LunaDNA, ultimately amounting to profit sharing.
Encrypgen offers yet another approach, again, creating a platform for users to store genetic information. Researchers can purchase de-identified genomic profiles directly from consumers using a cryptocurrency called DNA Tokens. This and other similar models allow consumers to privately store their genomic information, control who can access it and receive compensation for sharing the data.
Encrypgen isn’t the only reason cryptocurrency and genetics have started to intersect. In fact, the underlying technology for cryptocurrency—the blockchain—is frequently used to store genetic information.
The blockchain breaks data into “blocks” then distributes them to computers around the world, protecting them with powerful cryptography puzzles. The primary value of the technology for data security is that the data is not held in any one place, which makes hacking much less of an issue.
Think of it like a credit card number. If it’s on the card in your wallet and someone gets your wallet, then they have your credit card number. The blockchain would be like cutting the card into pieces, then hiding the numbers all over your person—a couple in each pocket, a few in your socks, maybe even one behind your ear. It’s just harder for the thief to get what they need.
As more companies enter the space, and especially as they invite more individuals onto their platforms, they’re using blockchain technology to secure the genomic data they collect. Since cryptocurrencies also operate on the blockchain, they may become an increasingly popular way to compensate people for genetic information
What’s yours is yours
In many ways, we are our data. That’s definitely true when it comes to genetics. If you are curious what your genome can tell you, there are more resources available than ever, but it’s important that you realize there are plenty of other equally curious parties.
Make sure your data is stored and used the way you want, and that you understand the benefits you, the vendor and other parties may be gaining from your genomic information. Generally, you can find these details on the company website or deep in the user agreement you consented to when first enrolling with the company.
The extra diligence can take time, but when it comes to your genome, it’s certainly worth it.
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