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.
Authors
- Anthony Solomonides (ORCID: https://orcid.org/0000-0003-2117-2461)
- Richard Schreiber (ORCID: https://orcid.org/0000-0002-6138-7048)
- Victoria Nichols-Johnson
- Larry Ozeran
- Paul R. DeMuro (ORCID: https://orcid.org/0000-0002-8781-4247)
- Ross Koppel (ORCID: https://orcid.org/0000-0002-8235-9900)
- Brian R. Jackson (ORCID: https://orcid.org/0000-0001-7902-3990)
- Bonnie J. Kaplan (ORCID: https://orcid.org/0000-0003-1911-0472)
Institutions
- University of Maryland, Baltimore (US)
- NorthShore University HealthSystem (US)
- Johns Hopkins University (US)
- Southern Illinois University School of Medicine (US)
- University of Utah (US)
- Johns Hopkins Medicine (US)
- Ethics and Public Policy Center (US)
- Episcopal School of Dallas (US)
- Pennsylvania Department of Transportation (US)
- Yale University (US)
- Woodland Hills Medical Center (US)
- Evanston Hospital (US)
- University at Buffalo, State University of New York (US)
- University of Pennsylvania (US)
- Penn State Milton S. Hershey Medical Center (US)
Publication Details
- Journal
- Applied Clinical Informatics
- Published
- 2024-10-03
- DOI
- https://doi.org/10.1055/a-2432-0329
- Citations
- 5
- Primary Topic
- Ethics in Clinical Research
- Type
- article
- Field-Weighted Citation Impact
- 2.71