Exploring public concerns for sharing and governance of personal health information: a focus group study.
Researchers are increasingly collecting large amounts of deidentified data about individuals to address important health-related challenges and answer fundamental questions. Current US federal regulations permit researchers to use already collected and stored deidentified health-related data from a variety of sources without seeking consent from patients. The objective of this study was to investigate public views on the policies and processes institutions have in place for accessing, using, and sharing of [...]
Author(s): McCormick, Jennifer B, Hopkins, Margaret A
DOI: 10.1093/jamiaopen/ooab098