Recommended Citation
Steve Calandrillo, Bernadette Tosti, Jefferson Smith, and Jamison Koeman, Expanding Equity and Innovation in Pharmaceutical Law and Drug Development: Paying Clinical Trial Participants for their Data, 23 Yale J. Health Pol'y, L. & Ethics 104 (2025), https://digitalcommons.law.uw.edu/faculty-articles/1144
Publication Title
Yale Journal of Health Policy, Law, & Ethics
Keywords
Data Tokenization, Real-World Data, Clinical Trial, Data, Patient, Pharmaceutical, Drug, Bipoc, Equity, Innovation, Trials, Clinical
Document Type
Article
Abstract
Bringing a drug to market is exceedingly expensive and exposes pharmaceutical manufacturers to significant legal risk. But when companies are successful, their profits make the PowerBall jackpot look like petty cash. Staggering rewards measure in the billions or millions for the firms, CEOs, pharmacies, drug benefit managers, data brokers, and many more actors in the pharmaceutical-to-patient pipeline. The only individuals who don’t get paid handsomely are the clinical trial participants, whose voluntary participation and data helped make those successes possible. It is long past time that we reform the legal and regulatory roadblocks to paying clinical trial participants in the United States for the fair value of their data—for it is precisely their information (and personal sacrifice) that makes so many others in our country wealthy beyond imagination.