In January 1951, a black woman checked into Johns Hopkins Hospital for a gynecological examination. A large malignant cervical tumor was found.
As she underwent radiotherapy, a renowned cancer researcher obtained a biopsy of her cancer. He was startled to discover that, unlike other samples he'd been collecting, this woman's cells didn't die but actually doubled almost every day. This immortal lineage of cells, now known as HeLa cells, would then find its way to numerous research centers where it contributed to various breakthroughs, including the development of Polio vaccines, genome mapping, and most recently, the development of COVID-19 vaccines [1].
Such a fascinating story, right? Not without its dark side. That has to do with the one question on your mind now: what happened to the woman whose cells started this whole cascade?
Unfortunately, this woman, Henrietta Lacks, succumbed to her cancer a few months after diagnosis. What’s perhaps just as unfortunate is that for over 70 years her family “didn’t see a dime” from the commercialization of HeLa cells because..*checks notes*..Lacks didn’t own the rights to these cells. Yes, those same cells that came out of her body and are named after her.
While the family finally received compensation from one of the companies marketing HeLa cells just a few months ago [2], the story of Henrietta Lacks stands as one of the most infamous acts of exploitation of personal medical records.
Of course, not all such acts are as visceral as extracting live tissue from non-consenting individuals. In the modern day, the exploitation of information — our health data — could have as much implications.
And as most healthcare systems worldwide have gone digital, health data might now be at more risk of falling into the wrong hands than ever before.
In 2023, more than 100 million electronic health records (EHRs) were reported as breached in the US, majorly due to hacking incidents of healthcare providers, according to the HIPAA Journal [3]. It’s no surprise then, as revealed through a survey by Health Gorilla, that 95% of patients are worried about health data breaches [4].
With the massive amounts of data consumers generate using health apps and wearables as well, these trust issues are proving more warranted. Case in point, a recent investigation by Privacy International showed that 61% of popular apps automatically transfer data to Facebook as soon as users open the app. This list included a couple of big-name health and fitness apps [5].
In light of these concerns, it’s clear we need more robust systems to secure the safety, anonymity, inalterability, and potential profitability of health data. Fortunately, the technology that can power such systems already exists.
Enter: Blockchain
Developed in 2008, this revolutionary technology has been transforming industries from finance to supply chain management, and now, healthcare.
Imagine a digital ledger, much like a spreadsheet, where each row of data, say your blood pressure reading, is stored. But unlike traditional spreadsheets, this ledger isn’t stored in one place. It’s distributed across multiple computers worldwide, each holding a copy of the ledger. This is the essence of blockchain.
Now, let’s say you take a blood pressure reading with your smartwatch. This reading becomes a new row in our ledger. But before it’s added, it’s bundled with other transactions into a ‘block’. This block is then verified by multiple computers or ‘nodes’ in the network. Once verified, it’s added to the ‘chain’ of previous blocks. Hence, blockchain.
It’s all about security. Once a block is added to the chain, it’s nearly impossible to change. So, your blood pressure reading is secure from tampering.
So, the power of blockchain lies in its ability to give control back to the owners of data. It allows us to have a self-sovereign, inalienable digital identity that isn’t controlled by any central authority and can be used anywhere, online or offline.
This means you have full control over your health data. You decide who can access it, when, and for what purpose.
Next up, we’ll explore some real-world use cases that demonstrate the power of blockchain in securing health data.
The COVIDathon: Decentralized AI Hackathon
As we delve into the practical applications of blockchain in healthcare, it’s worth noting the missed opportunities. According to Dr. Ben Goertzel, Chief AI Scientist at Rejuve.AI and worldwide AI thought leader, the COVID-19 pandemic was a glaring example [6].
Governments worldwide, like China, understandably ran aggressive contact tracing programs amidst the pandemic. However, privacy stood as a major issue in most of these programs. Blockchain technology could have offered a privacy-preserving track and trace option, and a broader privacy-preserving aggregation of personal data for collective analysis for the greater medical good.
This need for secure health data solutions was the driving force behind the COVIDathon decentralized AI hackathon [7]. Over 1,000 developers participated, creating a plethora of relevant tools to combat COVID-19.
Among the winning projects was ImmunoLynk. ImmunoLynk developed a system for verifying COVID-19 test results using blockchain. The aim was to make a tamper-proof system for people to show they were healthy so we could all get back to normal life safely. ImmunoLynk’s system was designed to ensure that the data was secure and could only be accessed by authorized entities. It did this by storing the data across multiple computers worldwide, each holding a copy of the data [8].
Chain of Trust: First Baby Born on the Blockchain
More apps exist for pregnancy than for any other medical topic [9]. Because of the highly sensitive data they contain, these apps are a prime example of the need for secure health data solutions. This need led to a groundbreaking project that witnessed the first baby “born on the blockchain.”
In a small town in Tanzania, a baby boy named Abdalah was born. His birth, like any other, was a cause for celebration, but it was also a landmark event in the world of technology and healthcare. You see, Abdalah’s birth marked the successful implementation of an initiative called Chain of Trust (CoT), a collaboration between PharmAccess and Aid:Tech [10].
The initiative aimed to reshape antenatal care in Tanzania by leveraging blockchain technology. Every step of Abdalah’s mother’s pregnancy journey was securely recorded and tracked.
The backbone of this project was Aid:Tech’s Blockchain platform. It was a secure hub for collecting, identifying, and verifying digital health data, thereby enhancing the safety and efficiency of antenatal care for women. The data was well-protected, and pregnant women had full ownership of their health records all throughout.
Longevity App: Decentralizing Healthspan Extension for All
The Longevity App is Rejuve.AI’s gift to health enthusiasts who care about the privacy of their data.
It utilizes an unwaveringly data-driven approach to extending the healthspan of users. Users engage in daily health tasks, fill out surveys, and upload lab test results, among other activities all with the goal of receiving personalized insights to enhance their longevity. The best part? For every contribution, users earn RJV, a blockchain-based token, which they can redeem for a variety of longevity-focused products on the app's Reward Store.
Additionally, the Longevity App is unique in its innovative use of Non-Fungible Tokens (NFTs). Simply put, NFTs are unique digital assets stored on a blockchain, representing ownership of a specific item. Rejuve.AI uses two types of NFTs: Data NFTs and Product NFTs.
Every time a user contributes data, a unique Data NFT is created and linked to their Rejuve ID. This NFT acts as a proof of ownership and a key to data permissions. It keeps a detailed record of every time their data is used in future products, guaranteeing total transparency and control.
As research findings evolve into potential therapeutics, a unique Product NFT is created to symbolize it. This NFT represents the combined efforts of all contributors. This ensures that they continuously benefit from any profits that the product generates.
In other words, the Longevity App is designed to prevent future Henrietta Lacks scenarios. It ensures that users not only have control over their own data but also have the opportunity to maximize its earning potential.
In essence, it’s provided a proof-of-concept for scalable blockchain-based systems to secure health data. And everyone is invited to benefit from it.
References:
[1] Khan, F. A. (2011). The immortal life of Henrietta Lacks. Journal of the Islamic Medical Association of North America, 43(2), 93–94. https://doi.org/10.5915/43-2-8609
[2] Wadman, M. (2023). What does the historic settlement won by Henrietta Lacks’s family mean for others? AAAS Articles DO Group. https://doi.org/10.1126/science.adk1834
[3] Alder, S. (2023, November 17). October 2023 Healthcare Data Breach Report - HIPAA Journal. HIPAA Journal. https://www.hipaajournal.com/october-2023-healthcare-data-breach-report/
[4] Health Gorilla’s patient privacy report reveals distrust of Health Data Sharing in light of data breaches and expanded access. Health Gorilla. (2023, July 11). https://www.healthgorilla.com/blog/health-gorillas-patient-privacy-report-reveals-distrust-of-health-data-sharing-in-light-of-data-breaches-and-expanded-access
[5] How Apps on Android Share Data with Facebook (even if you don’t have a Facebook account). (2018). https://privacyinternational.org/sites/default/files/2018-12/How%20Apps%20on%20Android%20Share%20Data%20with%20Facebook%20-%20Privacy%20International%202018.pdf
[6] Goertzel, B. (2021, January 1). Lessons in Failing to Apply Blockchain and AI to Combat COVID. https://www.coindesk.com/markets/2021/01/01/lessons-in-failing-to-apply-blockchain-and-ai-to-combat-covid/
[7] COVIDathon - Decentralized AI Hackathon. (n.d.). COVIDathon - Decentralized AI Hackathon. from https://covidathon.devpost.com/
[8] ImmunoLynk. (2020, April 24). Devpost. https://devpost.com/software/immunolynk
[9] Hughson, J. P., Daly, J. O., Woodward-Kron, R., Hajek, J., & Story, D. (2018). The Rise of Pregnancy Apps and the Implications for Culturally and Linguistically Diverse Women: Narrative Review. JMIR MHealth and UHealth, 6(11). https://doi.org/10.2196/mhealth.9119
[10] PharmAccess. (2019, January 30). Blockchain of Trust: Digitizing a Mother’s Journey Through Pregnancy. @PharmAccess. https://medium.com/pharmaccess/blockchain-of-trust-digitizing-a-mothers-journey-through-pregnancy-bbe29353c410
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