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News
ELSI in Review • August 2023
About this listing ELSI in Review is a listing of recently published reviews of the literature on key ELSI topics curated by CERA staff. Our August 2023 set explores ethical implications of… -
Grant Abstract
Managing Incidental Findings in Human Subjects Research
This 2-year renewal project builds on our previous NHGRI-funded project on "Managing Incidental Findings in Human Subjects Research" (#1 R01 HG003178-01A1). Using that project's…- behavioral /social science research tag
- Clinical Research
- confidentiality
- endoscopy
- Ethics
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Publication
Democratizing clinical-genomic data: How federated platforms can promote benefits sharing in genomics
Frontiers in Genetics -
Publication
Medicaid coverage practices for approved gene and cell therapies: Existing barriers and proposed policy solutions
Molecular Therapy - Methods & Clinical DevelopmentAllen and colleagues describe how discrepancies between the legal requirement to cover all FDA-approved drugs according to their medically accepted indications and the coverage policies of 16… -
Publication
“A double-edged sword”: A brief history of genomic data governance and genetic researcher perspectives on data sharing
Journal of Law, Medicine & Ethics -
Video
ELSIcon2024 Plenary: Indigenous Data Sovereignty: Finding Pathways for Equitable Benefit Sharing from Genomic Science
ELSIcon2024 • Plenary • June 10, 2024 Authors: Maui Hudson - University of Waikato, Te Pua Wananga ki te Ao (New Zealand) Indigenous Data Sovereignty (IDS) represents a vital…- ELSIcon2024
- 6th ELSI Congress
- Indigenous communities collaboration
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Publication
Does legislation impede data sharing in Australia across institutions and jurisdictions? A scoping review
Journal of Medical Systems -
Publication
Genomic data as a national strategic resource: Implications for the genomic commons and international data sharing for biomedical research and innovation
Journal of Law, Medicine & Ethics -
Publication
It's all in the timing: Calibrating temporal penalties for biomedical data sharing
Journal of the American Medical Informatics AssociationThe Center for Genetic Privacy and Identity in Community Settings (GetPreCiSe). Grant number(s): RM1HG009028 -
Publication
Data for sale: Trust, confidence and sharing health data with commercial companies
Journal of Medical Ethics