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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 :
- Complementary Index
- Journal :
- Journal of Law, Medicine & Ethics
- Publication Type :
- Academic Journal
- Accession number :
- 135929131
- Full Text :
- https://doi.org/10.1177/1073110519840486