Could NFTs offer new ways to control and share personal health information?

In a new publication in the journal Science, a multidisciplinary team of scholars in ethics, law and informatics led by two bioethicists at the Baylor College of Medicine - first author Dr. Kristin Kostick Quenet and senior author Prof. Amy McGuire - has written one of the first commentaries on how the new emerging technology NFTs, or nonfungible tokens, could be repurposed for the healthcare industry. The researcher group of which Timo Minssen is part of, inquires, if – and if so how - NFTs could help patients gain more control over their personal health information. NFT digital contracts could provide an opportunity for patients to specify who can access their personal health information and to track how it is shared.

In that way NFTs might be used to democratize health data and help individuals regain control and participate more in decisions about who can see and use their health information. But the researchers also point out that NFTs are still vulnerable to data security flaws, privacy issues, energy concerns and disputes over intellectual property rights. Further, the complexity of NFTs may prevent the average citizen from capitalizing on their potential, and the new technology might also encounter resistance by key-players dominating the multi-billion dollar health data market. The researchers therefore believe it is important to carefully consider potential risks, benefits and challenges as NFTs emerge as a potential avenue to transform the world of health data. 

Prof. Timo Minssen, co-author of the paper and the founding Director of the Centre for Advanced Studies in Biomedical Innovation Law (CeBIL) at the University of Copenhagen’s Faculty of Law, said: “We have to be very much aware not only of the opportunities but also of the potential risks and draw- backs. But the use of NFTs should at least be carefully investigated within controlled environments, so-called regulatory sandboxes with the help of blockchain technologies, swarm intelligence and smart contracts to then test how this would potentially play out in real world settings.” He added. “If carefully combined with the developments of appropriate safeguards and enforceable best practices for balancing innovation with individual rights and public interests, such technologies mightoffer opportunities for a more sustainable evolution of technology and regulation to accommodate new digital ownership and data sharing models. This could also include the consideration of more open and decentralized innovation models. But once again, he stresses, we really have to test and debate the pros and cons of the promises and perils of these options very carefully, and that demands a deep understanding of the technology and a broad debate of its ethical, legal, social and political implications.“

In addition to Prof. Timo Minssen from the University of Copenhagen, the first author Dr. Kristin Kostick-Quenet and senior author Prof. Amy McGuire from the Baylor College of Medicine,  the leading experts Prof. Kenneth Mandl, Prof. I. Glenn Cohen, Prof.Urs Gasser and Prof. Isaac Kohane also contributed to the publication How NFTs could transform health information exchange. They are from the following institutions: Boston Children’s Hospital, Harvard Medical School, Harvard Law School, and Technical University of Munich. See the publication for a full list of funding for these researchers.