Right now, medical information is digitized in electronic health records. But physicians are not the only ones who want to use that data. Medical researchers and companies are purchasing large, anonymized data sets to find novel markers of disease, train diagnostic algorithms and create risk calculators that evaluate surgical candidates. While this work is useful, says Kristin Kostick-Quenet, a medical ethicist at Baylor University, it also creates an ongoing ethical conundrum. “Sensitive, personal health information is being accessed and exchanged outside of patient awareness on a regular basis and using legal means,” she says. The system as it exists now benefits a few companies that control access to health records, Kostick-Quenet says, rather than centering the interests of the patients whose data are being used.
In an article published in Science, she and her coauthors suggest that NFTs could provide a solution. For patients, owning an NFT of their medical data would be like creating a kind of sentry to guard that personal information. While their data would still be stored in a secure, encrypted database, the NFT would act as a gatekeeper, tracking who requested access, who was granted access and when—and recording all those actions publicly. NFTs are especially well-suited to this because they use a technology called smart contracts: essentially if/then statements that can predecide how an item gets used. Instead of having to make a decision every time someone wants to use the data, patients can create parameters —-specifying they only want to give access to academic researchers, for example, or for research into cancer treatments—and the smart contract automates that decision.
Marielle Gross, who studies technology and women’s health care at the University of Pittsburgh, wants to extend the use of NFTs even further, to cover biospecimens such as tumors that are physically removed from patients or organoids created with a patient’s tissue. “There‘s really no good reason, morally speaking, why patients aren‘t the owners of their own samples and the derivatives thereof,” she says.
In a paper published in JMIR Bioinformatics and Biotechnology, Gross and colleagues argue that NFT technology could have helped avoid many of the problems highlighted by the story of Henrietta Lacks, a Black woman who sought treatment for cervical cancer in 1951. As part of her exam, doctors at Johns Hopkins University took tissue samples of her tumor—but then they sent those samples to another researcher without Lacks’s knowledge or consent. Because the so-called HeLa cells were able to survive and thrive in the lab, they became essential to a wide range of medical research. Unbeknownst to Lacks, her contribution led to breakthroughs in immunology, cancer research and even the development of the COVID-19 vaccine. If someone in Lacks’s position owned an NFT of their cells, that person could track how the cells were used. Gross sees HeLa cells as a perfect fit for an NFT because these biospecimens are both finite (they have unique, physical characteristics) and infinite (they can replicate and be copied just like a digital asset). “Their replicability and their ability to be distributed widely, it’s really that they‘re like a chimera of those two entities, of the physical and digital,” she says.
But not everyone sees NFTs as a viable option for tracking medical data. For one thing, it’s not clear whether patients even own their data once it’s been entered into an electronic health record. “The trick with data or information is that it’s not like property, where one transfers ownership and gives up rights or claims to it,” says Lisa Lee, who was executive director of the Presidential Bioethics Commission under President Obama. She says patients share custody over their information with the doctors and health systems that collect it. While patients have a right to see it and to have a say in responsibly using the data, they may not have an absolute right to control what happens to it.
In some cases, suggests Ken Goodman, a bioethicist at the University of Miami, patients should not be allowed to opt out of sharing information because those data are so important for public health. Goodman points out that sharing information about COVID-19 positivity rates, for example, has been crucial for understanding infection risk during the pandemic. That said, he suggests NFTs might build trust in the medical system by giving people a stake in it, encouraging them to share their data with scientists. But first, there needs to be more research about why some people prefer not to share their data—and whether they actually want the kind of fine-grained control over their medical information or biospecimens that NFTs allow. “I think it’s an exciting idea,” he says. “I think it deserves a lot of study.”
In addition to the ethical quandaries, there are still technical problems to solve before people can start minting NFTs out of their tumors and health records. For one thing, minting NFTs and maintaining blockchains currently requires an enormous amount of power, creating a troubling environmental cost. For another, Kostick-Quenet notes, NFTs alone are not enough to protect databases of personal medical information. If someone gained access to such a database and then copied it, they could exchange it outside of the public ledger, independent of a patient’s wishes and without any transparency. Additional structural supports like strong encryption of the data could help. Another way to enforce the system is through federated learning, a technique that allows machine learning algorithms to learn from data sets held in many different places—without ever extracting the information itself.
And for some medical data, no amount of technology can protect patient privacy. “You can’t de-identify something with a genome,” Gross says. The DNA associated with any tissue or cell is a unique marker, which automatically identifies its source and makes anonymity impossible. That said, she also argues that in many cases, including the Henrietta Lacks example, anonymity isn’t designed to benefit patients. “It’s about easing the use of the person‘s data—or in this case, their tissue—by third parties without having any accountability to them,” she says. “If anything, the privacy that de-identification is protecting is that of the researcher, not of the patient.”
Finally, there needs to be a lot of public education about what NFTs are and how they work before patients can give informed consent, Gross says. As a result, mass adoption could take some time. But proponents of NFTs are hopeful that the technology could finally give patients transparency into, and some control over, the afterlife of their data. These tokens might not become as viral as Dogecoin, but they could still be valuable: markers of gratitude and respect for what patients are contributing to medical knowledge.