Op-Ed: From transparency to community, blockchain can make things better.
In 1951, only eight months after her diagnosis, Henrietta Lacks, a Black woman from the city of Baltimore, Maryland, lost her fight against cervical cancer at the age of 31. Following her diagnosis, Lacks was referred by her primary care doctor to Johns Hopkins, where another physician, George Otto Gey, took a biopsy of what turned out to be a cancerous mass in her cervix.
During her treatment — and without her knowledge or consent — two samples were taken from Lacks, which later became known as the HeLa immortal cell line, and turned out to be revolutionary in the future of contemporary biomedical research.
Neither Lacks nor her family were ever notified about the decision to harvest her cells or those of countless others, which were used to developed research and treatment, saving myriad lives as a result of them.
While Lacks’ family eventually received partial legal control over her DNA code in a historic settlement in 2023, her story remains a case study for the lack of transparency, accountability, access, and consent in the medical industry — and especially how it affects minorities. Seventy-two years later, blockchain technology offers a potential solution to the problem that plagued not only Henrietta Lacks but so many others like her who exist at the whims of digital health access inequities.
Tokenization equals transparency — and a lot more
“NFTs have the capability of putting patients back in the driver’s seat as opposed to keeping health data vendors in total control of the fate and use of their data.” — National Library of Medicine
The beauty of the blockchain lies in its immutable, transparent, and tamperproof nature. This sprawling network of interconnected, peer-to-peer nodes act like a trail of breadcrumbs, always pointing back to a specific block settlement or transaction hash: a unique address of an onchain transaction that serves as the record (or proof) that something has occurred.
From digital art to currencies, this is what makes blockchain so effective in verifying ownership and provenance of a specific asset. While the NFT boom of 2021 demonstrated this power mainly in digital art, it’s just as powerful for verifying the origin and journey of other data — including health data, which, in the early 90s, became primarily electronic.
Let’s explain why this is a potential game-changer for medicine.
Ownership & Transparency
Whether you're posting on Instagram or filling out a patient form on a tablet in a waiting room, you might be surprised how little ownership or immediate access you have over your data. This is where the fine print gets all so important, albeit troubling. New York state’s website will alert you to the many restrictions and tedious roadblocks around your health data, which you must request (via a form), can be denied access to (you can appeal), and can be charged for. While rights under the HIPAA have drastically improved since the days of Henrietta Lacks, unethical things still happen to your health data every day.
Enter blockchain and tokenization.
In a web3-powered health industry, everything from patient intake and consent forms to your actual medical records and even tissue samples can be brought onchain. Instead of signing with a pen (or these days, finger on a touchscreen), you'd sign onchain forms using your web3 wallet. From there, you'd be able to track the journey of your tokenized medical data, which could be embedded into the metadata of a dynamicNFT that evolves per your medical history. A similar system is already being piloted by the University of Pittsburgh's Breast Disease Research.
If medical portals and providers are brought onchain, patients and doctors wouldn't be forced to rely on archaic, expensive EHR (electronic health record) software like Cerner — another centralized walled data garden — to track records. This increased level of transparency could also be used as a more efficient and transparent form of inventory management for tissue and organ donors, who often must rely on gatekept, hard-to-track records.
Authenticity & Access
With onchain medical data, patients and medical providers would gain more confidence in the authenticity of that data, which could be verified between parties. This verification would help protect against medical scams, shoddy information, and illegal data sharing and provide transparent, immediate access to patients whose wallet addresses match their health data and providers.
Patients would no longer have to apply (and wait) to access data that should be theirs. Regarding authentication, everything from machine to tissue samples to organs could be verified via onchain technology, protecting against counterfeit medicine and reducing the dangers of the organ donor black market.
Monetization
If Henrietta Lacks’ cell data was minted onchain, her family would have known precisely where it went. Through the design and adoption of web3 health applications, Lacks’ family could have given consent to the utilization and access of her data. Think of this like creator royalties in NFTs, but for patients to track and even sell ongoing access to their health data to those who need it for research purposes. This feature could provide additional income for patients faced with high medical costs as well as researchers who publish their work onchain.
Memberships
With a rise in the popularity of medical concierge services and membership programs, this space is ripe for web3 disruption. Instead of relying on traditional membership structures and acquisition practices via centralized intermediaries, doctors can sell membership NFTs directly to patients, including loyalty tiers and perks, complete with evolving metadata and the verifiable, transparent features mentioned above. For an industry that often feels cold, rigid, and intimidating, this could add a level of dynamic engagement and customization.
Power to the patients
It won’t be easy to see many of these use cases come to life in a space that’s heavily controlled by the likes of Big Tech and Big Pharma. But, just as cryptocurrency, NFTs, DeFi, and DAOs have helped democratic access and opportunity from the few to the many, the potential of bringing medicine onchain can return more power to the people — and the patients who need it most.
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Raakhee Miller is the CEO of Mojito, a leading NFT platform solution that enables companies to create new, valuable business verticals and has generated more than $100 million in sales. Mojito launched in 2021 with a $20 million raise and $100 million valuation from strategic investors like Sotheby’s, CAA (Creative Artists Agency), NEA, and Moore Capital. Over the last 20+ years, Raakhee has held multiple successful leadership positions around product and tech at Goldman Sachs, Morgan Stanley and Macquarie. She also served as Chief Product Officer at Drivewealth, a B2B tech unicorn powering embedded investing experiences on 100+ brands, globally.
Mojito, the leading platform for NFT commerce and community engagement, is a spin-out from web3 marketing and product studio Serotonin. The world’s biggest brands use Mojito for white-label NFT drops, marketplaces, memberships, and events. Upon launching in 2021, Mojito raised $20 million [*at a $100 million valuation] from strategic investors like Sotheby’s, CAA (Creative Artists Agency) & NEA's Connect Ventures, as well as Moore Capital. To date, Mojito has generated more than $120 million in sales for brands and creators.
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