biorepository, exit interviews, human nonsubjects, research ethics
Health Law and Policy | Law | Privacy Law
Aim: In this study, we sought to assess patient awareness and perceptions of an opt-out biorepository. Materials & methods: We conducted exit interviews with adult patients and parents of pediatric patients having their blood drawn as part of their clinical care at Vanderbilt University Medical Center (TN, USA). Results: 32.9% of all patients and parents of pediatric patients report having heard of the opt-out biorepository, while 92.4% approve of this research effort based on a brief description. Awareness that leftover blood could be used for research increased among adult patients during the study period, from 34.3 to 50.0%. Conclusion: These findings will inform ongoing assessments of the suitability of opt-out and opt-in methods as alternatives to written informed consent for inclusion in a biorepository.
Ellen Wright Clayton, Kyle B. Brothers, Matthew J. Westbrook, M. Francis Wright, John A. Myers, Daniel R. Morrison, Jennifer L. Madison, and Jill M. Pulley,
Patient Awareness and Approval for an Opt-Out Genomic Biorepository, 10 Personalized Medicine. 349
Available at: https://scholarship.law.vanderbilt.edu/faculty-publications/207