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Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons.
- Source :
-
Journal of Law, Medicine & Ethics . Spring2019, Vol. 47 Issue 1, p70-87. 18p. 1 Diagram, 2 Charts. - Publication Year :
- 2019
-
Abstract
- A medical information commons (MIC) is a networked data environment utilized for research and clinical applications. At three deliberations across the U.S., we engaged 75 adults in two-day facilitated discussions on the ethical and social issues inherent to sharing data with an MIC. Deliberants made recommendations regarding opt-in consent, transparent data policies, public representation on MIC governing boards, and strict data security and privacy protection. Community engagement is critical to earning the public's trust. [ABSTRACT FROM AUTHOR]
- Subjects :
- *MEDICAL informatics
*INFORMATION commons
*TRUST
*GENETIC research
*INDIVIDUALIZED medicine
*HUMAN genetics
*INFORMATION sharing
*BIG data
*BIOTIC communities
*EMPLOYEE recruitment
*HEALTH
*HOPE
*INFORMED consent (Medical law)
*MEDICAL care
*HEALTH policy
*MANAGEMENT of medical records
*MEDICAL research
*POLICY sciences
*PUBLIC health
*RISK assessment
*SELF-evaluation
*INFORMATION resources
*SOCIAL responsibility
Subjects
Details
- Language :
- English
- ISSN :
- 10731105
- Volume :
- 47
- Issue :
- 1
- Database :
- Academic Search Index
- Journal :
- Journal of Law, Medicine & Ethics
- Publication Type :
- Academic Journal
- Accession number :
- 135929131
- Full Text :
- https://doi.org/10.1177/1073110519840486