NFT Your Health Data: What are the Ethical Implications?
Saturday, October 14, 2023
9:00 AM – 10:15 AM ET
Location: Essex C (Fourth Floor)
Nonfungible tokens (NFTs) have been proposed as mechanisms to empower patient ownership and control over digital health data by democratizing data access and exchange decisions and facilitating patient compensation for secondary uses of health data. Here, we present qualitative results from an NIH-funded study of ethical, feasibility and desirability considerations for using NFTs for health data. We draw on interviews with diverse stakeholders with patients and physicians currently involved in generating sensitive digital health data, developers of decentralized tools (blockchain, smart contracts, federated learning) and ethical, legal and policy scholars focusing on data protection. Findings suggest strong potentials of health-related NFTs for data governance and stewardship in clinical research and care but highlight the need for other complementary and enabling technologies, such as federated learning, as well as supportive and enforceable legal and policy frameworks to promote trust and uptake. Our analysis of stakeholder incentives further reveals that even “trustless” tools like NFTs require immense trust and cooperation from stakeholders with diverse and often competing interests in the health information economy. We propose proximate steps to pursue NFT-like frameworks to help incentivize more democratized, transparent, and efficient systems for responsibly exchanging health information, where patients participate in decisions about how and with whom their personal health information is shared.