New article in Science, co-authored by Rector Gasser: Can NFTs help patients to regain control over their health information?

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In a new Science article, HfP Rector Urs Gasser teamed up with colleagues from Harvard University, Boston Children’s Hospital, the Baylor College of Medicine in Houston, and the University of Copenhagen to explore the promise and limits of Non-Fungible Tokens (NFTs) for sharing personal health data. As discussed in the article, personal health information (PHI) “will become centrally important as big data and machine learning move to the forefront of health care and translational research. The current health information exchange (HIE) market is dominated by commercial and to a lesser extent not-for-profit entities and typically excludes patients.“ Despite evolving legal frameworks for data protection, like the GDPR in Europe, patients often have only „limited agency in deciding which of their data is shared, with whom, and under what conditions.“‘ Exploring novel approaches to empower patients, the Science article explores to what extent new forms of digital ownership could „inspire a digital marketplace for patient-controlled health data.” In addition to engaging with the opportunities, the article also highlights serious risks and challenges that need to be addressed to unlock NFTs potential to “help incentivize a more democratized, transparent, and efficient system for HIE in which patients participate in decisions about how and with whom their PHI is shared.”