Bento Bio: From Data Donorship to Data Ownership - Part 1: The Vision
Written by Adam Rankin, Software Engineer and Director of the Hypatia API Lab
In the age of information, data is currency. There is a reason that at the time of this writing the five largest companies in the U.S. by market cap are Apple, Microsoft, Amazon, Google, and Facebook. These are the companies that make the devices and applications that collect humanity’s data. These companies make tens of billions in revenue hosting and analyzing the world's data. A few even make profits by selling their users' data. The most successful modern companies are ones that derive maximum value out of the data they collect. Industries are undergoing a massive digital transformation, and entities that are not getting the most use out of their data are being left behind.
This transformation is happening at a rate too fast for most individuals, much less non-technical legislators, to iron out the implications of what is happening. If you are in this boat, you are not alone. With a degree in cybersecurity and computer science, I can share with you some insight about how the digital world currently operates. Here is the data-collection strategy technology companies deploy: collect everything, make sense of it later. When I say everything, I mean everything: they collect what you search, when you search, where you are, what you click, how long you spend on a page, sometimes even the path your vision takes as it processes the information presented. After sufficient data has been collected, they are able to profile you and predict how you will act. For example, once Amazon catalogs the products that you and your neighbors purchase most, they can stock their regional warehouses accordingly to offer same day shipping for popular items.
There is a trade-off of privacy for convenience. Maintaining privacy comes only at the expense of increasingly convenient services that are difficult to give up: once you experience the same-day gratification of Amazon Prime, try waiting 5 business days for shipping. The good news is that there is a better path forward which will shift the paradigm and allow individuals to protect and even profit off their data.
Currently, you are a data donor
Let me raise a question: Do you own the data collected about you? “No” would be an understatement. You most certainly do not. You know this of course, because as any diligent crusader of the modern-day digital world would, you read the privacy policy of applications before you sign away your data rights, right?
Since we all know that nobody does that, I will do you a favor and provide an example from a popular direct to consumer genomics company:
“You understand that by providing any sample, having your Genetic Information processed, accessing your Genetic Information, or providing Self-Reported Information, you acquire no rights in any research or commercial products that may be developed by 23andMe or its collaborating partners. You specifically understand that you will not receive compensation for any research or commercial products that include or result from your Genetic Information or Self-Reported Information.” (https://www.23andme.com/about/tos/)
This is how these companies make money. Sometimes the company offers a free service such as a social media platform or a search engine. They collect your data then profit from it, whether by selling it to marketing firms or analyzing and acting on it themselves. Other times, as is the case with companies like Ancestry.com or 23andme.com, you purchase a product which takes samples from you. You are a paying customer, and they still own and sell your data.
You have become a product
Legally and morally, there is nothing wrong with what these companies are doing. They offer a service or platform, and you consent to their terms. The questions we want users to ask are these: Should Facebook have the sole right to profit off the identities and actions of their users? Should I own my digital identity the same way I own my physical identity? Should I be paid when a company makes money off my data? If the product is me, should it be my property?
At Bento Bio, we propose not only that you should own your data, but also that you should have the right to monetize it.
At Bento Bio, you will own your data, and you will be compensated as your data is collected and when it is sold.
At Bento Bio, you are not a data-donor, you are a data-owner.
How can you believe that Bento Bio has your best interests in mind? We are a tech company after all!
Before you write this off as untrustworthy, let me explain why you do not have to take this on faith. First, let us take a step back. What does it mean to own data? There are three necessary and sufficient conditions for one to be able to say they own data:
(Most important) The owner has the “right to be forgotten” or completely delete the data
The owner has the right to sell and profit from the data
The owner has control of who can access data
This is all great, but how can we enforce that users meet these conditions for the sensitive data they provide? One would need a lawyer to understand the obscured jargon of the modern-day privacy policy.
Enter blockchain. Blockchain is like having thousands of independent lawyers working transparently and all coming to the same conclusion in under a minute.
Cryptocurrency, blockchain, NFTs, and smart contracts are common buzzwords in the technology world today. Here is what you need to know without getting into a deep dive: Advancements in blockchain technology make it possible to create a unique customizable and digitally transferable asset, much like a stock.
In the case of a stock, you have an account with a brokerage firm who owns the stock in your name. You pay a commission fee for the verification to trade a stock and for the service the brokerage firm provides. You have given the brokerage firm your identity which allows them to verify with the appropriate governing bodies that it is you who owns the stock.
In the case of a blockchain asset, you create a wallet that is capable of owning, transferring, and deleting assets. Where it differs from a stock transaction is that instead of trusting a firm or a governing body to verify what you own, you trust a network of thousands of independent computers to hash out who owns what. These computers do not even need to know who you are or what it is you own – in fact, they do not care who or what. As long as you pay a small fee, these computers will validate transactions and ownership for you. It is important to emphasize here that your identity does not have to be tied to the asset you own or the data it represents. This will be important later on.
So, with the ability to own and delete assets, condition 1 is covered. What about 2 and 3? How can you make money, and how can you control access? This is where the concept of a smart contract comes into play. Smart contracts are a way to manipulate data in a customizable way. Simple, right? No. Allow me to propose a metaphor: imagine you are a popular songwriter. Tired of allowing big media giants to produce and deliver your music, you produce and release a song yourself on a blockchain based music streaming app. The app allows you to specify exactly what it costs each user to listen to your song one time for the entirety of its existence on the app.
For simplicity sake, say you want $0.01 per listen and your song gets 500,000 listens per month resulting in $5,000 of revenue per month. A smart contract allows you to enforce this interaction: the user pays $0.01, and software rules release the song for 1 listen. You now own your song via your wallet, and your wallet is credited with currency each time the song is streamed: condition 1 and 2.
Limiting access to your song (condition 3) is easy. In the same way you can customize the monetization of your asset, you can customize the access. Continuing this analogy, say you want your song to be released early, but only to fans who saw your recent live show. Easy. Add a software rule that can scan a user’s ticket before releasing the song to them. This access rule could be anything. For example, what if you want your song to only be listened to by HIPAA-compliant verified pharmaceutical research institutions (HINT HINT)? You can do that too. Blockchain is the solution that will shift the paradigm and give users their data. There is great opportunity for those early to the party.
I have only scratched the surface of how creative you can get with your assets. You could trade the rights to your song and sell that $5,000/month cash flow to someone else. You could break up the song into 1,000 “shares” and allow your fans to actually own a portion of your song, receiving a $5/month dividend-like cash flow while using the proceeds to fund your future songwriting. The possibilities of ownership, royalties, trading, and managing access to the digital assets are infinite and are all enforced by the army of thousands of computers that act as the lawyers of a blockchain network.
What is Bento Bio? What’s in it for you?
Now we know that an individual can own data, delete it, trade it, rent it out, and perform any number of other functions in a secure and private manner. So how does this all relate to Bento Bio? Using the blockchain framework laid out previously, we are building an ecosystem where regular people can monetize their healthcare data and not forfeit ownership or transparency.
The healthcare industry has seen great innovation in data utilization, but it is slowed by regulatory burden and difficulties in data collection. There is a treasure trove of healthcare data waiting to be put to use to accelerate drug research, genetic research, diagnostic medicine, medical imaging and much more. It is slow-going because thanks to HIPAA and other related legislation, healthcare is one industry with a developed set of rules around what can and cannot be done with data. The protection of personally identifiable information is certainly necessary and beneficial, but if there is one thing that agile engineers and innovative companies hate, it is regulation slowing them down. However, as the saying goes, one man’s trash is another man's opportunity to build a HIPAA compliant blockchain based data solution for in-silico healthcare research.
At Bento Bio, we see data protection laws not as a hindrance, but as an opportunity to build a next generation solution to make use of the plethora of data available and to bring the healthcare industry forward while maintaining the highest privacy standards.
The Bento Biology Box™ is the beginning of this ecosystem. Starting by collecting samples from participants of clinical trials and patient registries, we can enable our users to create a Biological Digital Twin™. The Biological Digital Twin™ will be a pseudo-anonymous collection of a person’s data which can be “minted” as a blockchain asset to work exactly the same as the song described in the example above. Users will have full rights to access and delete the data as they see fit. We can enrich this sample data with phenotype data as well as subjective data collected from daily symptom reporting on the Bento Flare™ App.
Users will be incentivized to provide data through rewards for completing actions such as taking samples and reporting symptoms that enrich their digital twin. This will be our continuous data collection phase. When enough data is collected downstream, these twins can become yield producing assets. Research institutions and pharmaceutical companies looking to analyze past data will be able to purchase access to these datasets which will automatically pay the owners of the twins, driving value for the data owner, the research entity, and of course for Bento Bio. This is what is meant by “In-Silico” research. Silicon is the material that semiconductors are made of; semiconductors allow computers to store data.
Additionally, we have prototypes built to analyze users’ data, and allow users to visualize their well-being over time. This way, users and their physicians can take a more data driven approach to living with a chronic illness. We believe that we can enrich the healthcare industry for both patients and companies while also setting a standard for how data creators (namely patients and users) can and should be treated in the future. This is our vision, and we are committed to making a more user focused and controlled technology environment.
In future installments, I will explore further the technology behind Bento Bio.
