Some medical ethicists support NFTs – here’s why news and research
Ever since artist Beeple sold a nearly $ 70 million digital work of art, a craze has swept through the world of cryptocurrency, captivating crypto evangelists and even the general public. This is because the piece was a non-fungible token (NFT), essentially a unique digital trading card that can also serve as proof of ownership of a physical or digital object. Each time this digital asset changes owners, the exchanges are recorded on a type of public account called a blockchain. Although Beeple’s success caused other NFT prices to skyrocket, their value may not hold. But behind all the hype and speculation, there are real uses for the blockchain. One such possible application could be to link NFT to medical data. Ethicists say the technology has enormous potential to reshape patients’ control over their medical information and allow people to track biological samples taken from their bodies.
Medical information is currently being digitized in electronic medical records. But doctors are not the only ones who want to use this information. Medical researchers and companies buy large, anonymized amounts of data to find new disease markers, train diagnostic algorithms and create risk calculators that evaluate surgical candidates. While this work is useful, says Kristin Kostick-Quenet, medical ethicist at Baylor University, it also creates an ongoing ethical mystery. “Sensitive, personal health information is accessed and exchanged outside the patient’s consciousness regularly and by legal means,” she says. The system as it exists now benefits a few companies that control access to health records, says Kostick-Quenet, rather than centering the interests of the patients whose data is used.
In an article published in Science, she and her co-authors suggest that NFT can provide a solution. For patients, owning an NFT of their medical data would be like creating a kind of sentry to protect personal information. While their data would still be stored in a secure, encrypted database, the NFT would act as a gatekeeper, track who requested access, who was granted access and when – and publicly record all of these actions. NFTs are particularly well-suited for this because they use a technique called smart contracts: essentially if-then statements that can determine how an object is used. Instead of having to make a decision every time someone wants to use data, patients can create parameters – and indicate that they only want access to academic researchers, for example, or for research on cancer treatments – and the smart contract automates that decision.
Marielle Gross, who studies technology and gynecology at the University of Pittsburgh, wants to further expand the use of NFT, to cover bio-samples such as tumors that are physically removed from patients or organoids created with a patient’s tissue. “There is really no good reason, morally speaking, why patients are not owners of their own samples and their derivatives,” she says.
In a newspaper published in JMIR Bioinformatics and Biotechnology, Gross and colleagues claim that NFT technology could have helped avoid many of the problems highlighted by the story of Henrietta Lacks, a black woman seeking treatment for cervical cancer in 1951. As part of her study, doctors at Johns Hopkins University took tissue samples of her tumor – but then they sent these samples to another researcher without Lack’s knowledge or consent. Because the so-called HeLa cells were able to survive and thrive in the lab, they became essential for a long line of medical research. Without Lacks’ knowledge, her contribution led to breakthroughs in immunology, cancer research, and even the development of the covid-19 vaccine. If someone in Lack’s position owned an NFT of his cells, that person could track how the cells were used. Gross sees HeLa cells as a perfect fit for an NFT because these bio-samples are both finite (they have unique, physical properties) and infinite (they can replicate and be copied just like a digital asset). “Their replicability and their ability to be widely distributed, it really is that they are like a chimera of these two devices, of the physical and digital,” she says.
However, not everyone sees NFTs as a viable option for tracking medical data. First, it is not clear whether patients even own their data once they have been entered into an electronic medical record. “The trick with data or information is that it’s not like property, where you transfer ownership and give up rights or claims on it,” said Lisa Lee, who was executive director of the Presidential Bioethics Commission under President Obama. She says that patients share custody of their information with doctors and health systems that collect it. Although patients have the right to see it and to have a say in a responsible way, but 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 that information is so important to public health. Goodman points out that sharing information about covid-19 positivity rates, for example, has been crucial in understanding the risk of infection during the pandemic. That said, he suggests that NFTs can build trust in the medical system by giving people a share in it, encouraging them to share their data with researchers. But first there needs to be more research on 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 bio-samples that the NFT allows. “I think it’s an exciting idea,” he says. “I think it deserves a lot of study.”
In addition to the ethical issues, there are still technical issues to solve before humans can begin to imprint NFTs from their tumors and health records. First, imprinting NFTs and maintaining blockchains currently requires an enormous amount of power, creating a worrying environmental cost. For another, Kostick-Quenet notes, NFT alone is not enough to protect databases of personal medical information. If someone had access to such a database and then copied it, they could replace it outside the general ledger, regardless of a patient’s wishes and without transparency. Additional structural support such as strong data encryption can help. Another way to maintain the system is through federated learning, a technology that allows machine learning algorithms to learn from amounts of data that exist in many different places – without ever extracting the information itself.
And for some medical data, no amount of technology can protect patients’ privacy. “You can not de-identify anything with a genome,” says Gross. DNA associated with any tissue or cell is a unique marker, which automatically identifies its source and makes anonymity impossible. That said, she also claims that anonymity in many cases, including the Henrietta Lacks example, is not designed to benefit patients. “It’s about facilitating the use of the person’s data – or in this case, their tissue – by third parties without having any responsibility towards them,” she says. “If anything, the integrity that deidentification protects is the researcher’s, not the patient’s.”
Finally, there must be a lot of public education about what NFTs are and how they work before patients can give informed consent, says Gross. As a result, mass adoption may take some time. But proponents of NFT are hopeful that the technology could finally give patients insight into and some control over the aftermath of their data. These tokens may not be as viral as Dogecoin, but they can still be valuable: markers of gratitude and respect for what patients contribute to medical knowledge.