Large-scale biorepositories that couple biologic specimens with electronic health records containing documentation of phenotypic expression can accelerate scientific research and discovery. However, differences between those subjects who participate in biorepository-based research and the population from which they are drawn may influence research validity. While an opt-out approach to biorepository-based research enhances inclusiveness, empirical research evaluating voluntariness, risk, and the feasibility of an opt-out approach is sparse, and factors influencing patients' [...]
Author(s): Rosenbloom, S Trent, Madison, Jennifer L, Brothers, Kyle B, Bowton, Erica A, Clayton, Ellen Wright, Malin, Bradley A, Roden, Dan M, Pulley, Jill
DOI: 10.1136/amiajnl-2013-001937