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Updated: Jan 26, 2026

The Participant-Reported Implementation Update and Score PRIUS: A Novel Method for Capturing Implementation-Related Data Over Time
Published on: February 19, 2021
Thought Leader Perspectives on Participant Protections in Precision Medicine Research
Catherine M Hammack1, Kathleen M Brelsford1, Laura M Beskow1
1Catherine M. Hammack, M.A., J.D., is an Associate in Health Policy in the Center for Biomedical Ethics & Society at Vanderbilt University Medical Center (Nashville, TN). Kathleen M. Brelsford, M.P.H., Ph.D., is a Research Assistant Professor in the Center for Biomedical Ethics & Society at Vanderbilt University Medical Center (Nashville, TN). Laura M. Beskow, M.P.H., Ph.D., is a Professor of Health Policy and Ann Geddes Stahlman Chair in Medical Ethics in the Center for Biomedical Ethics & Society at Vanderbilt University Medical Center (Nashville, TN).
Abstract:
Precision medicine research is rapidly taking a lead role in the pursuit of new ways to improve health and prevent disease, but also presents new challenges for protecting human subjects. The extent to which the current "web" of legal protections, including technical data security measures, as well as measures to restrict access or prevent misuse of research data, will protect participants in this context remains largely unknown. Understanding the strength, usefulness, and limitations of this constellation of laws, regulations, and procedures is critical to ensuring not only that participants are protected, but also that their participation decisions are accurately informed. To address these gaps, we conducted in-depth interviews with a diverse group of 60 thought-leaders to explore their perspectives on the protections associated with precision medicine research.
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