Ethical Dimensions of Clinical Data Sharing by U.S. Health Care Organizations for Purposes beyond Direct Patient Care: Interviews with Health Care Leaders

Our analysis identified gaps between ethical principles and health care organizations' data-sharing policies and practices. To better align clinical data-sharing practices with patient expectations and biomedical ethical principles, we recommend updating HIPAA, including re-identification and upstream sharing restrictions in data-sharing contracts, better coordination across data-sharing approval processes, fuller transparency and opt-out options for patients, and accountability for data-sharing and consequent harms.